tag:blogger.com,1999:blog-44932988191066242762024-03-04T22:05:18.725-08:00Leila's JourneyThis summer Leila was diagnosed with Autism Spectrum Disorder. We wanted to keep our friends and family updated on Leila's journey and her progress.Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-4493298819106624276.post-46440531132225634902015-04-19T20:19:00.000-07:002015-04-19T20:19:04.673-07:00A neat story and my MOPS talk
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I was recently asked to sit on a panel for our MOPS. The topic was "courage to face your mom fears". There was an adoptive mom, a working mom, a blended family mom, and then me. Special needs mom ;) I thought I would share it here on the blog since it's been awhile and then share a really neat story about Leila from the other night. </div>
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Yesterday I cut about 3 inches off my hair and then dyed it darker again. I was giving Leila her bath and she kept scripting this scene out of "Monsters vs. Aliens" and I thought it was funny because she hasn't watched that movie in a long time. So I was thinking what is she trying to tell me? She just kept repeating it over and over again. And then I thought I look like the main character, Susan, before her hair goes white. I have the same cut and color now! So I said, "Leila, do I look like Susan?" and she said pointed at me and said "You're her!". What?!? Leila has had lucid moments before but rarely in front of me. Mostly with her therapists or at school. It was so SO SO AWESOME. I just relish in those moments!</div>
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So here is my talk that I gave. You get to read it, without hearing my cry or blubber through it. Lucky you!</div>
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I admit I didn’t have any fears about being a mother before
I had kids. Being a mom was something I had dreamed about for as long as I can
remember. The whole idea of being a mommy is very exciting, right? 7 years ago,
when I was pregnant with our second child I had no reason to be fearful of
being a mom again. </div>
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So, I have a 9 year old, Lucy, a 7 year old, Leila, and a 2
1/2 year old, Lily. Our Leila is on the spectrum. When Leila was 2 1/2 she was
diagnosed with Autism Spectrum Disorder and our world got turned upside down,
and my plans for the present and the future changed and that’s when the fears
started flooding in. In the beginning, the fear presented itself as anger and
anxiety. Why us? Why Leila? Will Leila transition to a regular classroom? Will
Leila ever hold a conversation? Will Leila ever look at me or say my name? On
and on and on. In the beginning I also did not support myself very well and I
didn’t have a close relationship with God. So when these fears started and I
questioned my abilities and questioned God’s intentions you can imagine I was
in a very, very bad place. These past 4 1/2 years have been a continuous roller
coaster of ups and downs, progress and regression, happiness and pain and the
ultimate growing and learning experience. So revealing my fears is a very
personal thing. I don’t often reveal all my layers… ask my girlfriends… but I
think my fears are something that all moms have in one way or another. Mine
just have another layer behind them.</div>
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In the beginning and throughout Leila’s life so far these
are the fears I have had and sometimes still face:</div>
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<b style="mso-bidi-font-weight: normal;">I fear I’m not doing
a good job and that I’m not doing enough</b>. When you have a special needs
child there is always something new you should be doing or trying to help your
child. I cannot think of a community of special needs parents more divided… new
diets, new therapies, new medicines, you should’ve done this; you shouldn’t
have done that… Being a mom is hard in general. Add special needs on top of
that and your job gets extra hard. My “boss” can’t have a conversation with me
beyond her very basic wants and needs. So I do everything I can on my side to
help Leila and beyond that I give to God. Because God does not give special
children to special people. God gives you the child that is meant for you. My
Leila is a beautiful, wonderful child of God and he reassures me that simply
being her mother I am enough for her and enough for him.</div>
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<b style="mso-bidi-font-weight: normal;">I fear for Leila’s
future</b>. One of the most frustrating parts of having a child with special
needs is that they are so unpredictable, or at least mine is. I can predict
that Lucy will more than likely graduate with a high school diploma, go to
college, get married, have babies. With Leila I don’t know. I can tell you what
I hope for her and that is that I hope for her the same things that Lucy will
have. Will that happen? Right now my answer is simply no. Right now Leila is
not on a path to have those things. Will that change? Maybe. Right now I must
take comfort in the fact that Leila’s future is not in my hands. Her future is
in her hands and the hands of God. I can only take Leila so far. The rest is up
to her and the grace of God. My hopes for Leila are endless and I believe she
is capable of a lot. God shows me this every time I underestimate her and she
proves me wrong. <strong>Romans 15:13 says…</strong><br />
May the God of hope fill you with all joy and peace as you trust in him, so
that you may overflow with hope by the power of the <a href="http://christianity.about.com/od/topicalbiblestudies/a/whoisholyspirit.htm"><span style="color: blue;">Holy
Spirit</span></a>. (NIV)</div>
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<b style="mso-bidi-font-weight: normal;">I fear I will always
battle my will to control and not trust in God</b>. Trusting in God is hard for
me. I have control issues when it comes to my Leila. As a mom it is my job to
fix things. Got a boo boo put a band aid on it. But I can’t fix or control Leila.
One, well, because Leila doesn’t need fixing. Two, I can’t control Leila or her
life. Don’t get me wrong I can in a certain way… and I can control her
surroundings to a certain point. But ultimately it’s not my job to control Leila.
It’s my job to guide her and it’s my job to love her unconditionally. I love my
daughter so fiercely that when things don’t go as I anticipate (which is quite
often) I tailspin into doubt, fear, and mistrust in God, it is quite simply my
first instinct. However, through the years I have slowly learned (and still
learn) that I must, must trust in God. I’ve learned that the power of prayer is
amazing and it doesn’t have to be a beautiful eloquent prayer for God to hear
me. I’ve learned that no matter how many times I mess up God believes in me.
Because he wouldn’t have chosen me as Leila’s mom unless he thought I was the
best fit for her. In the end “I want to be a woman who overcomes obstacles by
tackling them in faith instead of tiptoeing around them in fear.” And I do. You
don’t want to mess with this mama bear.</div>
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<b style="mso-bidi-font-weight: normal;">I fear you will judge
me. </b>I get told a lot, you are so strong, I don’t know how you do it, I
can’t imagine.<span style="mso-spacerun: yes;"> </span>Well, I’m not strong half
the time, I don’t know how I do it either, and no, you can’t imagine… just the
way I can’t imagine living your life. I fear you will look at Leila and see a
bratty 7 year old. Because you see Leila’s autism is invisible to the unknowing
eye. She is a gorgeous little girl and you wouldn’t know something was up unless
you looked closer. If you looked closer you would see she doesn’t make eye
contact really. You would see all her dollies that she brings everywhere for
comfort (naked Barbie dolls too, awesome), you would see she can’t answer my
questions. You would hear a voice that knows no difference between inside and
outside. And I’m afraid you won’t see those things and judge the fact that a
child as big as Leila is freaking out because I won’t let her bring in 10
dolls, only 3. Or, you’ll see me struggling to walk (or carry) Leila out of a
situation and you’ll stare in disbelief that a child her age is acting so
uncontrollably. So how does God help me through this fear? By surrounding me
with friends that don’t care that Leila is different. By giving me friends that
when I tell them my fears they are there 100%. They don’t leave and they don’t
judge. They are a direct <span style="mso-spacerun: yes;"> </span>reflection of
God’s love for me. They are my people and God placed them in my life because he
knew they where right for me. Just like he placed Leila and I together. <span style="mso-spacerun: yes;"> </span>I also know that it doesn’t matter what people
think. The only opinion that matters is his. Through him I gather strength
whether that is weekly, daily, or by the minute.</div>
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So in the beginning the fears were stronger but with time
they have dissipated and grown weaker. Only occasionally do they rear their
ugly heads. Now that I am better supported both physically, emotionally, and
spiritually I know I can step out in faith and trust for myself and Leila and
not be fearful nearly as much. I now know the power of prayer, of a good
girlfriend, and of God’s love for me and my Leila.</div>
Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-795205186461014412014-06-11T21:39:00.000-07:002014-06-11T21:39:31.597-07:00UPDATE
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I wanted to send an update out to our family and friends
that often ask how Leila is doing. A lot has happened over the past couple
months and we have big changes headed our way yet again. To start from the
beginning, and to be perfectly honest, Leila is not doing well in school. The
first half of the year for Leila was great and she was making awesome gains.
Then we had 2 weeks off for Christmas break. When we came back to school Leila
started to regress in her behavior. She went from having “green” days were she
kept her hands to herself, did not raise her voice, stayed with her class and
within school/playground boundaries to constantly tantruming (kicking, hitting,
screaming, throwing, hitting her head), removing her shoes and clothes, running
away, and having to do the majority of her work in the hallway separated from
her class. We had her IEP (Individual Education Plan) in February and it was
clearly evident that Leila’s behavior was blocking her from the curriculum and
slowing down her learning. When her days started to become only “orange” and
“red” or “bad” and “really bad” I requested to have a functional behavior
report done. The report basically requires the school behaviorist to figure out
why Leila is tantruming. The report required something like 30 hours of
observation and data taking… that’s a lot. They also were assessing whether or
not a one on one aide would help Leila as well. </div>
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Things came to a head the week before Chris and I left for
vacation. Leila had decided to take her shirt and shoes off and run around the
playground at lunchtime and away from her aides. I was called by the principal
because it was considered a safety issue and they wanted to make me aware.
Right. I was desperate at that point and considered pulling her from school but
instead decided to start calling people. I started with one of the program
specialists at the district and through my tears I think she took pity on me,
gave me some useful advice, her cell phone number and told me to call anytime.
Then I called an advocate. I told her what was going on, that the program
specialist mentioned moving Leila to a private school specifically for children
with special needs and that this was new territory for me and I was scared. She
told me she could help us and did a lot of research on her end to find out as
much as she could about Leila. When we all met to review the functional
behavior report the results were that Leila was tantruming because she didn’t
want to do what they were requesting (duh) and was very averse to any kind of
transition, whether that be within the classroom or out of it. They suggested
at that point that Leila would benefit most from a private school were they had
the ability to work within her tantrums and wait her out or remove her to a
safe room. Leila’s current teacher, Heather, is supposed to be the best in the
district (and I can truly say she is) and if Heather couldn’t control Leila
then no one in the district would be able to. From there they sent out a
representative from the proposed school to observe Leila and once she gave the
okay we went out to take a tour of the school in <st1:city w:st="on"><st1:place w:st="on">Hayward</st1:place></st1:city>. </div>
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Chris and I were not prepared for this tour. The school had
been talked up so much to us and how great it was going to be for Leila that I
formed this picture in my head of how it would be and that was not a good idea.
The school is right by CSU East bay so it is about a 35 minute drive with
minimal traffic. The school was once a public school that was shut down and the
<st1:place w:st="on"><st1:placename w:st="on">Spectrum</st1:placename> <st1:placetype w:st="on">School</st1:placetype></st1:place> moved in. So it is old. And ugly.
The school goes all the way up to the age of 22, because they have a transitional
work program for 18-22. There are 90 students on campus only 10 of them being
girls. The students range from severe to mild. The classroom suggested for
Leila has 12 kids in it and 7 staff. When we walked into the classroom we were
greeted by a high functioning girl (who is aging out this year) but in the
corner was a boy tantruming. I immediately noticed they were cutting out and
coloring an Elmo and then I keyed in on the severe children. For example, one
was using a chewy tube. These were children were you could see their autism,
not like Leila were you wouldn’t necessarily see it at first. I then started
panicking and shutting down and didn’t really see the classroom only a few
kids. When we got back to the Assistant Director’s office I had a full break
down/panic attack that these were the kids Leila would be going to school with.
I don’t consider my child severe; I also don’t consider her high functioning. I
think she sits right on the cusp of high functioning and if she could just have
expressive language she would be on the higher end of the spectrum. Lots of
things were running through my mind. I don’t want her exposed to these
children, they are not peer models. I don’t want her picking up bad habits. How
are they going to encourage her language? How are they going to academically
challenge her when there are severe children in the classroom? Just outright
panic that this was where we were sending her. Then doubt. Was Leila this bad
and I’m in denial? I know she is a certain way at home and a whole different
child at school. Did her behavior really warrant this type of environment?
Would they be able to give her the intensive intervention that everyone is
telling us Leila needs? Did I fail Leila? By sending her to this school am I a
failure to her? Well I feel like it dammit. I’ve never been in denial that
Leila has autism but I am in denial that this is where she needs to be. The
whole thing was complete culture shock and devastating… there is more I could
type but it’s not worth the typing.</div>
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We had one day to process all this before I went to the last
IEP yesterday to “sign” that Leila would go to school there. We ended up only
agreeing to a trial summer period of 5 weeks. I know that the school environment
is not working for Leila. She is not learning and is not successful so keeping
her in any public school is not the best option for her right now. Putting
Leila in this new school is not the best option yet either. We asked for all
options to be open at the end of summer to see what other schools Leila could
possibly attend (there is not a lot out there without a significant drive).
Leila’s current teacher, Heather, and her current behaviorist both agreed to go
out to the school to check on Leila over the summer to see how she was doing. I
also have the option at any time to pull her from summer school (it is not
mandatory). I am going back to the school to take a tour again and really walk
into the classroom and look beyond the students and more at the schedule,
staff, and curriculum. I still feel sick to my stomach. And I hate, absolutely
hate, that she will be all the way in <st1:city w:st="on"><st1:place w:st="on">Hayward</st1:place></st1:city>.
This transition is hard for me. Probably harder then when I sent her off to
school full time at age 3. My friend told me today that sometimes you have to
take a step back before you can take a step forward. This is clearly a step
back for Leila but I hope with all my heart that this is what she needs to move
forward. She is so smart and such a fun loving girl it has been very hard to
watch her struggle in school. She could be so much more if she would just get
out of her own way. Our goal is to get her back at the district. I hope it
happens sooner rather then later.</div>
Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-12265269747448653172012-05-03T21:42:00.000-07:002012-05-03T21:42:20.622-07:00Saying Goodbye and other updates...<br />
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Saying Goodbye</div>
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This has taken me awhile to write. My dang pregnancy
hormones are making it extra hard to get through…</div>
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<o:p> </o:p>Two weeks ago I got the bad news that our <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> supervisor Natalie was leaving PCFA.
Natalie found a job closer to home with less hours and more money so she could
not pass up the opportunity. I was devastated when I got her email. Natalie had
been with us since Leila was 2 1/2. She saw our house when Chris and I were
sleeping on an air mattress in the front room during our addition/remodel. She
helped me to get through all the initial feelings of guilt and sadness that
came when Leila was first diagnosed. Natalie and I had some times where we
butted heads but ultimately she was a great support to me when I needed someone
who would understand the frustrations of raising a child with autism. She
listened to me when I would doubt myself over everything from how many hours of
therapy Leila should have, to what I should feed Leila, to what I should do
when Lucy was acting out. I miss her. Natalie leaving really doesn’t have that
much of an effect on Leila. Leila’s therapists will stay the same and that is
really all that matters. Natalie never ran a daily session with Leila she just
oversaw her program and visited with me once a week while she updated Leila’s
binder. I really looked forward to her visits and often times when Leila was in
early intervention, and I was stuck in the house for over half the day, she was
one of the few adult conversations I had. I gave up a lot when Leila went into
early intervention. We lost the playgroup opportunities and play dates with
friends that stay at home mom’s depend on for social interaction. It was a tuff
transition and Natalie helped to get me through it. I will miss seeing her
weekly and I will miss our chats. She did give me her personal information
though and I hope we stay in contact.</div>
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Last week I received an even more devastating blow. Leila’s
teacher, Nikki, informed me that she is moving back to <st1:state w:st="on"><st1:place w:st="on">Texas</st1:place></st1:state> at the end of the school year. Nikki
and I have recently formed a friendship outside of school. I was so excited to
finally be making a friend of my own that I hadn’t met through someone else. It
was nice to have a friend that truly understood what having a child like Leila
means but then also have other things in common too. It’s been hard for me to
make new friends since Leila’s diagnosis. I find it hard to trust people and
feel comfortable enough with to bring Leila to someone’s house. I didn’t have
to worry about this with Nikki. Nikki’s husband is moving back to <st1:state w:st="on"><st1:place w:st="on">Texas</st1:place></st1:state> for his job but
she has agreed to stay till the end of the school year. I know this is quite a
sacrifice to be separated from her husband and take care of her 3 children by
herself. So I’m just sad lately, sad to be losing my new friend and sad for
Leila to lose this great person in her life as well. Because Leila has also
formed an attachment to Nikki too... she loves Nikki very much, gives her hugs
all the time, calls her by her name (probably more then she says mine), and has
some separation anxiety from her. You could say Nikki is like a second Mom to
her since she spends the most time with her besides me. I feel bad that Leila
will lose this relationship and hope and pray that her next teacher is just as
awesome. I know everything happens for a reason and I’m very thankful to have
had Nikki in our lives for this brief period of time. I will really miss her.</div>
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Otherwise Leila is doing great. Her in home <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> therapy is finally going really well, her
new supervisor works really, really well with her. In fact, she is probably a
better fit for were we are at now in Leila’s therapy. Leila is interacting more
and more with Lucy and their new thing is fighting over sharing the ipad… like
a normal sibling interaction! It’s annoying to have to break up but nice to see
them actually acting like typical sisters. We have about one more month of
school left before summer vacation and I don’t plan to enroll Leila in summer
school this year. Even though the other LASS class teacher is teaching this
summer I cannot trust the aides they hire to work with her. They are not the
normal aides… basically hired babysitters for the summer. I cannot risk having
Leila regress again like she did last year. So Leila will just have <st1:place w:st="on"><st1:city w:st="on">ABA</st1:city></st1:place> therapy over the
summer before she goes back to school again in August.</div>
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Which brings me to a new battle in keeping Leila’s therapy
coverage on track. Recently, <st1:state w:st="on">California</st1:state> passed
a law requiring that health insurance fund <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> therapy. As of July 1<sup>st</sup> your
insurance must work with you to fund therapy or it’s basically against the law.
I think this is great, no, I think it’s awesome! I think a lot of people will
really benefit from this. However, this has become a HUGE pain in my butt. Our <st1:city w:st="on">ABA</st1:city> coverage, which for 6 months costs upward of $30,000
is currently funded by the <st1:placename w:st="on">Regional</st1:placename> <st1:placetype w:st="on">Center</st1:placetype> of the <st1:place w:st="on"><st1:placename w:st="on">East</st1:placename> <st1:placetype w:st="on">Bay</st1:placetype></st1:place>.
Well… now the <st1:place w:st="on"><st1:placename w:st="on">Regional</st1:placename>
<st1:placetype w:st="on">Center</st1:placetype></st1:place> is telling me that
Leila will only be covered until June 30<sup>th</sup>. After that they are not
legally responsible to fund Leila’s therapy – this will be our health insurance’s
(Kaiser’s) responsibility. What this means is that there will more than likely
be a large gap this summer in Leila’s therapy. Currently, our <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> provider, PCFA, is not a vendor of Kaiser.
So, unless they beat feet to become one (and I don’t how that works) we will
have to start all over with another <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city>
company doing all new assessments. Since I am not enrolling Leila in summer
school she potentially will have a 2 month break in any kind of therapy… which
is not good. Leila thrives off of a solid routine and <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> therapy. So we must either float her <st1:city w:st="on">ABA</st1:city> therapy through July (which would be quite expensive) while
hopefully Kaiser approves our funding and we start our new assessments or I
must fight with the <st1:placename w:st="on">Regional</st1:placename> <st1:placetype w:st="on">Center</st1:placetype> to keep her <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> covered through July. I am okay with
Leila having the month of August off. She will be okay with a basically 3 week
break before school starts again. Either way I am not really appreciating this
new law right now it’s only causing me stress.</div>
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<o:p> </o:p>We are still trying to fundraise for our North Star Dog…
read our previous blogs to learn more about it. Thanks and I will try to update
the blog again soon!</div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-66133358304407820292012-03-24T14:20:00.000-07:002012-03-24T14:20:32.051-07:00MOPS Devotional - My story of learning patience and raising a child with autism<div class="separator" style="clear: both; text-align: center;">
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So, I was given the opportunity to speak at my MOPS these past two weeks. I had thought of posting my devotional to the blog for people to read but then I thought it would mean more if I actually read it. Probably could have touched up the make-up and worn a more flattering shirt but you know it's late, I'm pregnant and... whatever :)<br />
Obviously, this is from my point of you and while it may seem at certain points when I am talking like I have low hopes for Leila's future this is just NOT true. Chris and I have every hope and belief that Leila will grow to be an independent, beautiful, smart, confident young woman. Her speech and eye contact continue to improve and she has recently shown great interest in copying and wanting to be with/follow Lucy. Lucy does not know what to make of this exactly and it's been a struggle to explain to Lucy that this is what little sisters do... bug their big sisters. Lucy's response was "Oh, I didn't know that" well she is getting a crash course in it now!! I suggested she call and talk to my older sister Alisha and ask her what it is like and she said that was okay she didn't need to call :)<br />
We are 21 weeks pregnant now with a third girl and everything else is going well. We are looking forward to suprising the girls with a trip to Disney Land next week and enjoying the parks through their eyes.Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-62208843667539446402012-02-09T21:11:00.000-08:002012-02-09T21:11:50.638-08:00North Star Foundation Puppy for Leila<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirzNiXkFyNPb5NuRbU8BxEP9BBOxXtW68ps2bXDtq6GlYcKHVZpkj9N-unwy5urZwc-J-mtbazyMJZwyjtR-_8uBuyma5GXUlbdjBSXxKU_gDTbtMznS4m0slHNHR5MbJHIX-93Vw9C3Ag/s1600/NorthStar.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="70" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirzNiXkFyNPb5NuRbU8BxEP9BBOxXtW68ps2bXDtq6GlYcKHVZpkj9N-unwy5urZwc-J-mtbazyMJZwyjtR-_8uBuyma5GXUlbdjBSXxKU_gDTbtMznS4m0slHNHR5MbJHIX-93Vw9C3Ag/s200/NorthStar.png" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBj6gJ-HgiP3om2cZxCGRQdGRV1KX8MPjKlt-ArPFMzY6_sjRhT9MRGgGgyFPOwVtAab2fxg4fE65q379GhQn2VOV50_dzqxNQAAent7AMXZFIPnrq_wJ-j0aHFdsogIpbh7Xim7QZRaHj/s1600/LeilaNewsLetter.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBj6gJ-HgiP3om2cZxCGRQdGRV1KX8MPjKlt-ArPFMzY6_sjRhT9MRGgGgyFPOwVtAab2fxg4fE65q379GhQn2VOV50_dzqxNQAAent7AMXZFIPnrq_wJ-j0aHFdsogIpbh7Xim7QZRaHj/s200/LeilaNewsLetter.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9B-k9jYU-zwIn_ibuMd2BqINiZklFl-F-S1wWM_VBIpY5iiCArhJkAz2MVaXO9ClufvsDShvuqtIsCdESC4uOEUF4GXIKDMGLDF3pDIV0EUcPUu089H19TSBrM6_kiaV-nN0TVOGu6GRJ/s1600/PuppyNorthStar.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9B-k9jYU-zwIn_ibuMd2BqINiZklFl-F-S1wWM_VBIpY5iiCArhJkAz2MVaXO9ClufvsDShvuqtIsCdESC4uOEUF4GXIKDMGLDF3pDIV0EUcPUu089H19TSBrM6_kiaV-nN0TVOGu6GRJ/s200/PuppyNorthStar.jpg" width="132" /></a><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">Dear Family and Friends,<br /><br /></span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">We write to ask for
your support in a very important mission – to sponsor the placement of a
service dog in </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">the Patrick Family. Our daughter, Leila (4 years old), has
autism and was just recently cleared for the </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">placement of one of the service
dogs bred and trained by the North Star Foundation. Her assigned puppy </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">will be
born later this spring; however, in order for the placement to occur, it is
crucial that we raise the </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">funds necessary ($5,000) in the coming weeks. The
high cost of placement is due to the nature of the </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">intensive and </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">specific
training each North Star dog receives, along with the considerable follow up
services </span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">they provide.<o:p></o:p></span></div>
<br /><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">North Star Foundation
is a nonprofit organization dedicated to helping children with special needs
through the use of well-bred and trained assistance dogs.<span style="mso-spacerun: yes;"> </span>They have been incorporated for ten years and
have made over 100 North Star placements in homes of children who face social,
emotional and educational challenges around the country. Over half of the
children they serve are on the autism spectrum. Their nonprofit work with
children on the autism spectrum was profiled in Autism Spectrum Quarterly’s
spring edition (<a href="http://www.asquarterly.com/"><span style="color: blue;">www.asquarterly.com</span></a>).<span style="mso-spacerun: yes;"> </span>You can also learn more about North Star by
visiting their website at <a href="http://www.northstardogs.com/"><span style="color: blue;">www.NorthStarDogs.com</span></a>
and/or viewing a video at <a href="http://www.youtube.com/profile?user=northstarvids"><span style="color: blue;">http://www.youtube.com/profile?user=northstarvids</span></a>.
<o:p></o:p></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Please consider making a donation to support the
placement of Leila’s service dog. Your donation to the North Star Foundation
can be applied directly to her placement and <b style="mso-bidi-font-weight: normal;"><u>must be received by May 31st</u></b> . All donations to North Star
are tax deductible (EIN # 06-1589586). Your check or money order should be made
out to <u>North Star Foundation</u> and you should put Leila’s name in the memo
line on the check so that they will apply your kind donation to support Leila’s
placement. You can also make a PayPal donation via the donation link on their
website at <a href="http://www.northstardogs.com/"><span style="color: blue;">www.NorthStarDogs.com</span></a>;
there will be a screen to indicate your donation is meant to support Leila, but
if you can’t find it simply send a separate email to Patty Dobbs Gross at <a href="mailto:northstarfoundation@charter.net"><span style="color: blue;">northstarfoundation@charter.net</span></a>
to inform her of your donation. Please also let us know of your donation so
that we can properly thank you for your support.</span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: Times New Roman; font-size: small;">
</span><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;"></span></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">We are extremely
excited about the immeasurable benefits Leila will receive with the placement
of a North Star assistance dog in our family and we really appreciate your
support to make this happen. We’ll certainly keep you informed of Leila and her
puppy’s progress in the coming months! Please feel free to contact us if you
have any questions: Chris and Jessica (925) 292-1352. Hope you and yours are
doing well and hope to hear from you soon </span><span style="font-family: Wingdings; font-size: 10.5pt; mso-ascii-font-family: Arial; mso-bidi-font-family: Arial; mso-char-type: symbol; mso-hansi-font-family: Arial; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span></span><br />
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<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;">Thank you in advance for your support,</span></div>
<div style="clear: both; text-align: left;">
<span style="font-family: "Arial","sans-serif"; font-size: 10.5pt;"><span style="mso-tab-count: 2;">C</span>hris, Jessica, Lucy, and Leila</span><span style="font-family: "Kristen ITC"; font-size: 11pt; mso-bidi-font-family: Arial;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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</span>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-53905643748522453042012-02-01T21:30:00.000-08:002012-02-01T21:30:05.298-08:00Lots of updates...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhohVQQ4IredKHz-iBcMAAk5hYVtWAYAqzQsuf6mAoy4jSGeICcPneLSuPCX9ZTdd8nY3hlFH4jCpWa_qMz3RgSEjhaIZi8jq0c8N_EkNNFsRoa6E37RG7EyNxE9IGTBZAt0PGfR-4THldS/s1600/IMG_2557-1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="142" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhohVQQ4IredKHz-iBcMAAk5hYVtWAYAqzQsuf6mAoy4jSGeICcPneLSuPCX9ZTdd8nY3hlFH4jCpWa_qMz3RgSEjhaIZi8jq0c8N_EkNNFsRoa6E37RG7EyNxE9IGTBZAt0PGfR-4THldS/s320/IMG_2557-1.JPG" width="320" /></a></div><br />
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</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">It’s been awhile since we posted a blog and quite a lot has happened in that time. We are now half way through the school year.<span style="mso-spacerun: yes;"> </span>Leila is doing really well and is in <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> therapy Monday through Thursday from 2:30-4:30. I chose not to have therapy on Fridays so that we could have a break. It’s a really long day for Leila so it’s nice to come home on Fridays and not worry about being ready for a therapist to come over. Leila is using her speech more and more (when necessary) and her eye contact has greatly improved. She even uses my name “mommy” from time to time without being prompted. She regularly uses Chris’s name to get him to play with her and occasionally will even say Lucy’s name to get her to play as well.</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I called an IEP last month to get Leila more speech at school. So she now has an additional 20 minutes of small group speech therapy to help with her articulation of large words. She was tending to start a word correctly and then not being sure of how to say it made up her own gibberish to finish it. She was also mixing up sounds. I am able to go into her classroom every Friday and observe her in two of her sessions as well as circle time and her first recess. I have seen some things I don’t like and Leila’s teacher is always receptive to my ideas and suggestions. Leila really loves school and runs from the car to school almost everyday. I’ve formed a friendly relationship with her teacher Nikki and really appreciate all she does. Especially since the other LASS class lost their teacher over Christmas and has had subs ever since. I was told they finally hired a teacher and that she has 11 years of experience with special needs but no experience with discreet trail – which is <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city>. Why would they put someone with no <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> experience in charge of a Language and Social Skills class?? I don’t know, but I’m glad it’s not Leila’s teacher. If it was I’d be calling an IEP and demanding she be moved to Nikki’s class.</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Leila’s <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> had a rough, rough start (as expected) but she has settled into it and likes her 3 therapists for the most part. She is closing a lot of programs and they have established instructional control so we are getting ready to venture out into the public for programs on learning to walk with me in a store, stop when being told, etc. next Tuesday. We are also trying to set up supervised play dates (with therapists) with another boy from the other LASS class who’s Mom I’ve become with friends with on a Saturday hopefully. So that’s really exciting.</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I also did some asking around and found out that the girl’s dentist has put children under anesthesia for teeth cleaning and x-rays. Leila had her teeth cleaned almost 6 months ago and it was just awful. She was so scared that she was screaming and choking. They tried their best to clean her teeth but just did not do a good job because of how upset she was. After being told twice by one dentist at the practice to just bring Leila in and have her watch other children get their teeth cleaned (Are you kidding me?!?) I approached the main dentist and told him “I know you’ve put children under so you cannot say no to me when I ask you to do this for me.” He said that normally because Leila is young he would say no but since we have a familial history of really bad cavities (Lucy had 6 at 4 years old and I’ve had cavities all my life) he would do it for me. Unfortunately, we have Kaiser so we cannot use the surgery center located next to the dentist office so we are paying out of pocket for the anesthesia, which is quite expensive. We feel it’s totally worth it though not to put Leila through any more pain and trauma from another teeth cleaning.</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Last thing for Leila is that we were recently cleared to start fundraising to get Leila and our family a trained dog. I thought we could just get an older dog but that is just not possible with Leila. She often makes dogs nervous and because she is often unpredictable we need to have a very calm dog that has grown up in our household. I found North Star Foundation on the internet almost a year ago but it just wasn’t the right time for us to commit to a dog. We’re now ready for a dog, especially the girls, and feel the dog will really help Leila to be calm and ease her stimming. I chose North Star because of their philosophy of involving the entire family in the training and transition of bringing the puppy into our house. They also are on the cheaper side and allow children as young as 3 to have a dog. Most foundations require the child to be 5 years of age. So when I say cheaper I don’t mean like $200.00… I mean like $5,000.00. Yep, $5,000.00. That’s a lot of money. However, because of the extensive training and the follow up services (and even flying the puppy from <st1:state w:st="on">Connecticut</st1:state> to <st1:state w:st="on"><st1:place w:st="on">California</st1:place></st1:state>) our puppy will be worth a lot of money. So we are starting to fundraise and will be sending out a letter to friends and family and posting it on Facebook in the hopes of getting some financial help! </div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">So our most exciting news for this post is that I’m 14 weeks pregnant. This is something that Chris and I have been thinking about since Leila was probably 1 year old. However, Leila was a wild and crazy 1 year old – I mean she started walking at 9 months old (well one week before she turned 10 months). Then when we started noticing problems at 2 years old so we postponed, then she was diagnosed at 2 1/2 so we postponed. Then over the last year and half we kept pushing the idea back waiting to see more and more improvement in Leila. Chris kinda got sick of me talking about it all the time so we made a deal to not talk about it till my 30<sup>th</sup> birthday. So on my 30<sup>th</sup> birthday I brought up the subject again and we decided that we were ready. There were a few things I wanted to do before getting pregnant and one of those was running in the Nike Women’s Half Marathon in October. So I beat my previous flat course half marathon time by 3 minutes (Nike is notoriously hilly) and that was a pretty good feeling. We found out we were pregnant a couple days before Thanksgiving. We are very excited! We’ve put a lot of thought into this decision and have thought out all the possibilities and what this implies for our family. We are well aware that we will now be outnumbered and that it will be difficult at first but we are up for the challenge. Basically, I could give you a thousand reasons why we should not be pregnant but all I can say is that I wanted one more baby, that I didn’t feel done, and that my heart has room for one more beautiful child. Of course I am scared but I truly believe everything will be okay.</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">We enrolled in Kaiser and UC Davis’s EARLI Study. This study will follow me through my pregnancy with interviews, blood work, urine tests, a dust test of our house and lots of questionnaires. Like about what I’m eating, my physical activity, my mental health, etc.<span style="mso-spacerun: yes;"> </span>They’ll also take Chris and Leila’s blood. Then when the baby is born they will take samples of the cord blood, meconium, and even my breast milk. They will also provide assessments for the baby at 6, 12, 24 and 36 months of age to make sure he/she is hitting all milestones and helps us to notice red flags for autism. Lucy is incredibly excited and hopes to have a brother since “she already has a sister”. Obviously Leila does not understand what is going on but I’m hoping as I get bigger she gets more curious. </div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">That is all for now… I’ll do my best to keep the blog more updated but now that I’m done for the day at 9:30 a lot doesn’t get done <span style="font-family: Wingdings; mso-ascii-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>.</div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-68760583493722589932011-08-27T16:26:00.000-07:002011-08-27T16:26:23.822-07:00Watch the video and an update on Leila<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/z2B1FeS5VX4?feature=player_embedded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The video above has a very powerful message so if you haven’t watched it already; I encourage you to watch it, right now. If you want to know what it’s like, if you want to know what a parent of an autistic child goes through and deals with he pretty much nails it. </div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Leila started school this week and her transition into a new classroom, with a new teacher, has gone really well. She had a rough time Tuesday when we dropped her off but her teacher said she was fine after about 10 minutes. She has two returning aides and two new aides. I really like her teacher, Ms. Nikki, so far. She is very protective of Leila and has said she “just loves her”. Who wouldn’t? <span style="font-family: Wingdings; mso-ascii-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> I’ve already seen small improvements in Leila’s eye contact and use of speech. But also seen the return of two old stims… taking a kitchen utensil (or anything she likes at that moment) and waving it in front of her face and taking sharp intakes of breath. So I plan to ask her teacher and our new <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> supervisor what I should do to discourage these old “new” behaviors.</div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;">This brings me to <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> therapy. Two weeks ago we completed all our assessments and met our new supervisor, Patrick. I like him a lot too. I let him know that I would not stand or hesitate to call him for therapists that do not call to tell me they are late or not coming. I also said I would not hesitate to call him if I thought a therapist didn’t “fit” right with Leila; that I would give them two weeks and if I still didn’t think they were right for Leila I would request they not come back to our home. He agreed with everything, told me to call him for whatever and whenever. I think we’ll get along just fine. <span style="font-family: Wingdings; mso-ascii-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> I finished all the paperwork (23 pages of paperwork, ugh!) and now we are in the waiting phase. Waiting for Patrick to write his final report and waiting for the <st1:place w:st="on"><st1:placename w:st="on">Regional</st1:placename> <st1:placetype w:st="on">Center</st1:placetype></st1:place>’s approval. Leila will most likely start therapy again in the middle of September/early October. Her day will be as follows: 8:30-1:30 school, maybe a 1 hour break, then <st1:place w:st="on"><st1:city w:st="on">ABA</st1:city></st1:place> therapy from 2:30-4:30. That’s a long day for a 3 year old, but <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> works so we are doing it. I won’t be putting Leila in any other activities like speech or occupational therapy because she gets OT twice a week at school and I’ve been told by Leila’s previous speech teacher and Patrick (<st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> supervisor) that speech therapy won’t exactly help Leila. Meaning, when Leila echoes or initiates speech her words are very clear. She does not need help annunciating or forming words. She needs help unlocking them from her brain. A speech therapist can’t really help with this. </div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="separator" style="clear: both; text-align: center;"> </div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I’ve been forcing Leila to use my name when asking for things lately in the hopes one day she’ll actually use it on her own. The day that happens I will update the blog with a simple “she finally said it”. I will be very happy the day that happens!!</div><div class="separator" style="clear: both; text-align: center;"> </div><div align="left" class="separator" style="clear: both; text-align: center;"></div><br />
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Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com1tag:blogger.com,1999:blog-4493298819106624276.post-13939781471141650262011-07-28T20:57:00.000-07:002011-07-28T20:57:35.804-07:00Leila's One Year Anniversary<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguwPPFNQHIL2957YPrtI4DkUzyTOMtpIn2x_YFFqtN0P_XJebFnK5KRu6YqqvggGw-fnvGSIfdTJmP-954auGvEEMh7edCZrCugwtZjOXXlYhC78-I1CBPfInYSqwUyTuxAOOOsWuCAw1b/s1600/IMG_8284.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguwPPFNQHIL2957YPrtI4DkUzyTOMtpIn2x_YFFqtN0P_XJebFnK5KRu6YqqvggGw-fnvGSIfdTJmP-954auGvEEMh7edCZrCugwtZjOXXlYhC78-I1CBPfInYSqwUyTuxAOOOsWuCAw1b/s320/IMG_8284.JPG" t$="true" width="320" /></a></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">One year ago today we received Leila’s preliminary diagnosis of Autism Spectrum Disorder. One year ago today I was just devastated.<span style="mso-spacerun: yes;"> </span>In some ways I still am. I still look at my beautiful, curly haired Leila and think, “why her?” and I still just can’t help but think what I could have done differently or where I could have been wrong. It’s hard, really hard. I have told some of my friends that I do best when I live my life day by day. So 90% of the time I focus on the here and now and do not think about Leila’s future. However, 10% of the time I am either forced or I let myself fall into thinking about her future and the struggles she will face as a teenager and adult. These 10% days are bad days for me, I get very depressed, cry, overeat – it’s not good. But, it doesn’t happen that often so I let myself have these days without too much guilt, and I think that’s okay.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>I think it’s safe to say it has taken me a year to make it through the 5 stages of grief and I’m pretty sure I’ve made it through relatively well. Gained a couple pounds, lost a couple pounds, got a lot more gray hair, got highlights to hide the new gray hair, but we made it to a year and the difference between Leila a year ago and Leila now is astounding. She went from no speech and tantruming every 5 minutes to being able to say so many words (most echoed still) and having a better hold, and maybe even a better understanding of her tantrum behaviors. I was pretty beat down when we started ABA a year ago. I really didn’t think it would work and starting it was horrible. Having to listen to Leila scream and cry in the other room and not barge in was hard. It took me a long time to realize that she wasn’t being hurt she just couldn’t express her frustrations in words. Staying in the house everyday was hard.<span style="mso-spacerun: yes;"> </span>We lost a lot of mommy/kid interaction that we would have gotten in a playgroup setting, I couldn’t co-op in Lucy’s class, and I had to drag the kids shopping in the middle of the afternoon, not a good time. But we made it through 6 months of ABA therapy and I don’t regret all that I sacrificed to have Leila in it. ABA made a huge difference in Leila’s life and opened the gateways for Leila’s speech abilities now. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">When Leila started school in March it was hard, again. Not many stay at home mommy’s let go of their 3 year olds for 5 ½ hours every day willing. I watched Leila scream and cry for that first week of drop off and every day I cried my way back to the car. I went from being stuck in the house for basically 5 hours a day to just letting go of her and trusting her in a school setting where I was not allowed (at first). But if I thought ABA did wonders for Leila, being in a speech classroom and ABA classroom did even more. Leila blossomed in school. Her speech tripled and she started using 2-3 word sentences. She started listening more, singing more clearly, and following directions better. We were amazed and still are. I credit Leila’s speech teacher, Sue Putnam, for a lot of this. She was just wonderful and a huge support and source of information for me. Unfortunately, they are changing the program this year and Leila will not have Sue again and I’m really sad and disappointed about that.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Lucy has been awesome. She is such a great big sister to Leila. She is like our own mini therapist constantly forcing Leila to engage and play with her. I’ve seen their relationship grown in leaps and bounds over the past month and it brings me such happiness to see them engaging each other and playing and laughing in the house. Sometimes I am sad for Lucy though. To Lucy, Leila is Leila, this is what a sister relationship is for her. But I know the relationship I have with my sister and when I found out that I was having another girl the first thing I thought of was I hoped Lucy and Leila would be as close as Alisha and I are. Perhaps they will and maybe they won’t, I can only hope for the best and try to foster a relationship between the two of them that will last a lifetime.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I think the only feeling and “issue” I have left to still learn to deal with is jealousy. I find myself jealous of a lot of things, maybe they are trivial or silly but I can’t help it. I’m jealous of other 3 year olds. I’m jealous of sibling relationships that my girls don’t have. I’m jealous of Mom’s who get to work in their child’s classroom. I’m jealous of people who can take their 3 year old to a movie. It’s silly, I know. But I’m working on it and slowly learning to accept still. I realize I sound very “poor me”, but this is my blog and this is what I feel on a daily basis. I pray a lot for patience, for understanding, to be a better mommy and wife and I think I am a better Mom then I was a year ago. I’ve done a lot to work on bettering myself this year including taking a 12 week Dialectal Behavior Therapy clinic, or as I fondly referred to it as my “crazy clinic”. After 12 weeks of therapy I am a more calm and rational person with Chris and most of the time with the girls ;), I found a hobby in baking that makes me really happy, and I’m still running and getting ready to train for my 2<sup>nd</sup> half marathon in October. Life is better than it was a year ago, our family, and my marriage is in a much better place. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">After pulling Leila out of a horrible summer school program this past month she has 4 weeks off and then starts school August 23<sup>rd</sup>. We have also started the process for ABA therapy once again and she will more than likely have 10 hours a week of ABA starting in September as well. I transferred Lucy to the same school as Leila so both girls will be in school Monday-Friday from 8:30-1:30. Yes, I’m very excited to have the time to myself, and I think I deserve it!! Despite regressing in some behaviors (due to the summer school) Leila is doing great, she is really using her words to try and communicate, and we are getting ready to potty train next week. Cross your fingers!! Life is good for us right now, really good. We have much to be thankful for. There is a reason God gave us Leila and I thank him every day for giving me a beautiful, healthy, smart little girl.</span></div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com4tag:blogger.com,1999:blog-4493298819106624276.post-5403165453221876252011-03-21T22:06:00.000-07:002011-03-21T22:06:21.649-07:00Leila's first IEP<div>We had Leila's first IEP this past Friday. I was pretty scared walking into it. I had convinced myself that I was walking into a room of people who didn't have Leila's best interest at heart and that I would have to fight for the services she deserved. I was so stressed out the night before that Chris literally had to take the piece of bread out of my hand to stop me from stress eating!!</div><div> </div><div>So we walked into a room with 8 people in total, Chris and I, the school psychologist, the adaptive PE teacher, the speech teacher, the ABA teacher, our Regional Center Case Manager, and our ABA supervisor. They started the meeting with the adaptive PE teacher reading us her assessment and her recommendations. Leila was assessed to be between the age of 2 to 2.6 for her gross motor skills like balance, walk-backwards, run and jump. She was recommended to have two pull-out sessions a week for 25 minutes of adaptive PE. Next, we heard from our ABA supervisor on Leila's progress over the last 6 months. Leila has met all but a few of her goals. She made great progress and we can definitely see a difference in her. My best friend Danielle said today that she notices a big change in Leila's speech ability, that she was talking a lot more! We then heard from the school psychologist and she basically spent a lot of time telling us what Leila can't do compared to what a typical child her age can do (a 3 year old). We heard a lot of Leila can't do this and Leila can't do that. Here is what Leila test results were:</div><div> </div><div>Cognitive Skills (Based on the Bayley Scales of Infant and Toddler Development):</div><div> </div><div>Cognitive - 26 months</div><div>Fine-Motor - 29 months</div><div> </div><div>Adaptive and Social-Emotional Skills (Based on the Vineland-II Adaptive Behavior Scales)</div><div> </div><div>Communication</div><div>Receptive 1-11</div><div>Expressive 1-4</div><div> </div><div>Daily Living Skills</div><div>Personal 1-7</div><div>Domestic 2-2</div><div>Community 2-2</div><div> </div><div>Socialization</div><div>Interpersonal Relationships 0-7</div><div>Play and Leisure Time 1-1</div><div>Coping Skills 1-11</div><div> </div><div>Autism Rating (Gilliam Autism Rating Scale)</div><div> </div><div>Stereotyped Behaviors - Very Likely</div><div>Communication - Very Likely</div><div>Social Interaction - Very Likely</div><div>Autism Index - 50th percentile, Very Likely</div><div> </div><div>So after confirming that Leila was autistic (duh, I know) she briefly went over Leila's strengths. Leila has great fine motor skills like using a pincer grasp to color on paper, stack blocks and string beads. She also has strong daily living skills like feeding herself, drinking from an open cup and helping to put things away.</div><div> </div><div>Then the speech therapist reviewed Leila's report and her recommendations for goals this year. Leila was assessed according to the preschool language scale:</div><div> </div><div>Auditory Comprehension - 1 year 9 months</div><div>Expressive Comprehension - 1 year 10 months</div><div>Total Language Score - 1 year 8 months</div><div> </div><div>Leila has 13 Goals for the next year to work towards. Just to give you an example, two would be: 1) Leila will demonstrate understanding of concepts big and little as demonstrated by her ability to point to the correct object/picture when named. 2) Leila will follow two-step related requests/directions involving herself, objects, and actions during a classroom activity, and she will turn and attend when her name is called in the classroom, without an adult verbal or physical prompt. Sounds simple enough right? Not really!!!</div><div> </div><div>The whole IEP took about 2 1/2 hours. Chris and I walked out feeling confident with the goals set for Leila and that her needs would be met. I have a feeling she will have a hard time adjusting to her morning speech class so Leila's first week of school I will be bringing Leila in for only a half hour to 45 minutes at a time to ease her into her new schedule. She will attend her afternoon ABA classroom like normal though. I feel she'll do great there as it is so similar to what she is doing at home now. Well, I think she'll transition well there. </div><div> </div><div>I've said this to a couple people, and I feel like a bad mom saying this, but I am grateful I will not be there for this new transition period. I think every mother HATES to hear their babies cry, no matter how old they are. Having to be home these past 6 months and listen to Leila cry almost on a daily basis through her sessions has been really hard. Really HARD. It's very stressful and rips me apart. So I am grateful that I won't be in the next room over having to listen to Leila struggle. I'm grateful that there will be trained professionals helping her to work through her frustrations and help her to express what she wants and needs. But I'm sad I won't be there to help her, and I'm sad I won't be there to comfort her when she is upset. I'm SAD to let go of my baby. I've been with Leila since she was born, I've been a stay at home mom with her the whole time. It's hard to give that control to someone else. She will be fine, I know she will be. It's just really hard to let go.</div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-2024192449969319312011-02-14T22:22:00.000-08:002011-02-14T22:22:06.489-08:00FrustrationThe past couple months have had a few bumps in the road. PCFA (our ABA services company) has struggled since December to fill Leila's therapy hours. Two weeks ago between unfilled hours and therapists calling in sick Leila received only 7 hours. At that point I got very mad and started making phone calls. I've said before that Leila's therapists are very young and it's starting to show in their work ethic. The tiniest bit sick and they call saying they can't make it. VERY frustrating. So I called our case manager at the Regional Center and asked what my options were as far as switching providers. She was able to get me in touch with another company that agreed to take on Leila with her existing assessments. After I made Natalie (our supervising ABA therapist), and Sonja (our lead therapist), aware of this they told me the reason Leila's hours hadn't been filled was because I was requesting experienced therapists. So I told them to just fill the hours!!! So viola! Her hours were filled. I really like her new Monday/Wednesday morning therapist very much. Leila's afternoon therapist I'm not so fond of. Leila has had her for a week and still continues to struggle and tantrum with her. I emailed Natalie this morning to let her know my concerns. She sent me a rather cold, generalized email back. I am counting down the days till I don't have to deal with PCFA. None of these therapists have children. None of them know what it's like to listen to your child scream and become so upset that they choke themselves (yes, I stopped the session this time). Not one of them understands how painful it is to hear your child struggle. I will NOT be using them again for Leila's social skills hours.<br />
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Leila had her school district assessment this past Friday at Croce Elementary here in Livermore. They have an entire special education program, kind of like a school within a school. Leila was assessed by 4 different people, a therapist, adaptive P.E. specialist, speech therapist, and nurse. She was assessed in 6 different areas, academic/pre-academic achievement, social/adaptive behavior, psycho-motor development, communication development, intellectual development, and medical health history. Part of the assessment was the exact same test Leila did in October for the Regional Center's official diagnosis. I actually saw a huge improvement in some of the areas they tested her on so that was awesome to see. The therapist told me she would call me back by Friday with their recommendations but she called today! They are recommending Leila have a full program. Which means on Mondays she would go 11:45-2:15 and Tuesday thru Friday she will go 8:30-2:15. Her day will go like this:<br />
<br />
8:30-11:00 Speech program. A class with 6 other children 1 teacher and 2 aides.<br />
11:00-11:45 - Lunch/recess<br />
11:45-2:15 - ABA based program. A class of up to 10 kids with 1 teacher and 6 aides.<br />
<br />
So... I knew this was a possibility but I just didn't think they'd do the all day program. Now that they are, I'm sad and a little overwhelmed. There will be no transition period, she turns 3 on a Saturday and starts school that Monday. I've gotten so used to being with her at home it is going to be extremely hard to let go so suddenly. I don't even know how to prepare for this. I mean, Lucy only goes to school 3 days a week for 3 hours!! I know to be thankful for these opportunities for Leila and receiving these awesome services and I know the progress we will see but I'm just so damn protective of Leila and I won't even be allowed to co-op in her classroom. I've kept Leila in my bubble for a long time now and to not be able to be with her watching her every move will be difficult. She shows the most affection to me, and I think I understand her efforts at communication best. However, she can barely communicate with me, how will she make it in a classroom all day?? Anyway, I have a lot of mixed feelings right now. On the 25th I have the opportunity to go observe the classes that Leila will be in so I think this will help ease my worries, or at least I hope.<br />
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Otherwise, Leila is doing great. Her little personality is finally starting to emerge and I'm finding that she has a very eager to please disposition. For example, she is very hard on herself when she doesn't get something right the first time. She loves, loves to read and sing songs! We recently put up a play structure in the backyard with swings and she could spend hours out there just swinging. She loves it! AND we have more progress in the potty department. Now, instead of practing sitting in on the little potty she prefers to practice sitting on the regular toilet with ring! That's a step in the right direction!!!!Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com1tag:blogger.com,1999:blog-4493298819106624276.post-14889374191766710082010-12-24T13:46:00.000-08:002010-12-24T13:46:27.822-08:00Great news!!<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><img src="http://img2.blogblog.com/img/video_object.png" style="background-color: #b2b2b2; " class="BLOGGER-object-element tr_noresize tr_placeholder" id="ieooui" data-original-id="ieooui" /> <style>
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<div class="MsoNormal"> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz1e6W98Oh61iQs5E_xBhByGYbQVcUqWnGAgvEhP1K2q0Zd77wcX_te3ik6SwJ9O30e0a7MF4JzI-z5arSeZIhcWcK2kY0jwntCj72rwkP2XZ2n8b_Xb1bu_lf4tTfK1JqJAqBGvfT8TIY/s1600/IMG_6809.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz1e6W98Oh61iQs5E_xBhByGYbQVcUqWnGAgvEhP1K2q0Zd77wcX_te3ik6SwJ9O30e0a7MF4JzI-z5arSeZIhcWcK2kY0jwntCj72rwkP2XZ2n8b_Xb1bu_lf4tTfK1JqJAqBGvfT8TIY/s320/IMG_6809.JPG" width="303" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"> </div><div class="MsoNormal"> Tuesday we had our case manager over for a review of Leila’s case and she gave us the great news that Leila has made status 2!! What this basically means is that Leila will receive services till the age of 6. She will have to be assessed again when she turns 3 and we will find out what exactly she qualifies for. Mostly we are hoping for continued ABA services. She could possibly get 10 hours a week of ABA and they would focus more on social skills rather than learning skills. Status 2 also means we qualify for respite services. We could go through a respite agency but they would only watch Leila and not Lucy. So, if we find someone personally (not a family member and they have to be over 18) we then become a vendor with the Regional Center and they reimburse us up to $10 an hour. So the hunt for a babysitter begins!!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We also recently let go of one of our therapists. I truly did not feel she was a good fit for Leila. She seemed to have lost control of the sessions and was not providing anything instructive for Leila. I also did not like the way she reinforced Leila, I feel she did too much physical reinforcement (tickles) than vocal. She did not have a good balance. So as of right now Leila only has TWTH sessions from 9:30-11:30 and 12:30-2:30. We are taking a break from all services next week so I’m hoping when we come back our ABA supervisor will have filled one of the spots on Monday and Friday. I do feel badly for this therapist but my number one priority is Leila. I want consistency and as little stress as possible for her. My gut tells me not to have the therapist back so I’m going to go with my mommy instincts.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">On an awesome note Leila is really making progress in her vocals. She is just really trying to communicate more with us and echos almost everything we say. She even echoed “I love you” last night. Sometimes she does not use words but will physically move me toward what she wants and even points. When she really wants our attention she will make direct eye contact with us and try to tell us; it’s pretty awesome. Even during Leila’s sessions the therapists have all but gotten rid of her PECS binder and now only use Leila’s ability to vocally ask for something to receive what she wants. They are also working on teaching Leila to take turns or to ask for a turn. This is the source of a lot of her tantrums lately but she is doing much better. Chris and I both agree that Leila has made huge strides in the last 2 months. Such little time has gone by but it has made such a huge difference.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I’m reading a book right now called “10 Things every child with autism wants you to know” and it’s almost snapping me out of my whoas me attitude. She says: </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">“If you are treading quicksand in the swamp of what-might-have-been, you can be pretty sure that’s the message your child is getting. You’re a rare person if being constantly reminded of your shortcomings spurs you to improve. For the rest of us, it’s not a self-esteem-building experience. Time to grab for that overhead vine and realize that there is only a pencil stroke’s difference between “bitter” and “better”.”</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I have to focus more on Leila’s potential and possibilities then what could have been. It’s a waist of time basically. I told a friend recently that God made Leila this special way and gave her to us because he thought Chris and I would be the best parents for her. This little thought keeps me going when I get down on myself.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Well, have a Merry Christmas everyone!! Leila has shown some interest in opening presents this year so I am excited to see her reaction on Christmas Day. I’m sure we’ll have lots of pictures and video to share!</div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com1tag:blogger.com,1999:blog-4493298819106624276.post-28409067261481710972010-12-09T22:31:00.000-08:002010-12-09T22:31:36.904-08:00T-shirts, dogs, and more communication<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><img src="http://img2.blogblog.com/img/video_object.png" style="background-color: #b2b2b2; " class="BLOGGER-object-element tr_noresize tr_placeholder" id="ieooui" data-original-id="ieooui" /> <style>
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</div><div class="MsoNormal">Well, we made it through Thanksgiving and have knocked out almost all our Christmas traditions (train of lights, Deacon Dave’s house) with little incident. Leila has definitely gotten used to being at home most of the time and is most comfortable here. Well, I have gotten used to it to. The more time we spend here the more stressed I become when going to other houses. Here at our house Leila is free to move around and explore without hurting herself or other things. I worry what other people think about Leila. She’s taken to screaming randomly as a self stimulant so that can take people by surprise. I’ve found these little autism awareness cards you can hand out if people stare or make rude comments. Basically saying, my child has autism, your comments/staring are rude, these are the characteristics of autism, educate yourself. Our supervising ABA therapist, Natalie, also suggested that if I am worried some of her clients put their children in an autism awareness shirt and she says this changes how people look at you and your child. So I’ve looked at some shirts and plan to buy soon!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Recently, Leila has taken off on me and other people have had to tell me where she is. We where in Kohl’s and she took off out the double doors. Lucy thankfully ran over yelling, “Emergency, emergency Mommy!! Leila ran out the doors!” I ran outside in the middle of checking out and an older woman was walking Leila back in. Thank goodness Leila followed this woman freely back to the store, I could just see the woman trying to bring her back in and Leila tantruming in the middle of the parking lot. Another time we were picking out our Christmas tree, I thought both Lucy and Leila were following behind me to the car. I turned around and Leila was gone. She had run across the Home Depot parking lot to look at flowers. Thankfully, a man and woman that had been in the tree lot saw me turning frantic and pointed to where Leila was standing. SO… Lucy desperately wants a dog. I think Leila would really benefit from a dog. I thought okay, I will get an older dog, already potty trained, great with kids. Well, I did some more research and found out that no matter if a dog is great with kids if they are not used to the type of tantruming Leila does they could either react aggressively or run away scared. Not really what I want to add to the situation. So I looked around some more and found a ton of sites that train dogs especially for autistic children. <b>Dogs that can track your child if they disappear or are trained to alert you if they start to stray</b>! They are trained to be around screams and crying and not stress about it. These dogs can help autistic children stay calm, create confidence and affection!! So I’m going to start looking seriously into it… if our school district allows it, if Lucy can be equally involved in the care of the dog, do I go with a site were we have to raise money or do we get on a waiting list? Stuff like that. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Otherwise, Leila continues to improve in her communication. She labels things independently now. Meaning, I don’t have to ask her and she’s not repeating something I said. For example, she will watch a movie like Wizard of Oz and point out and say, flowers, water, bubble, and puppy. She constantly is asking to be picked up by saying “want up”. She also uses “look” and “need help” a lot to communicate with us. She can also tell me “drink” when she is thirsty. These have really helped with tantrums. Well, we still have tantrum issues, like tonight trying to put Leila in her pajamas she completely melted down and then promptly passed out when laid down in bed. That girl LOVES to be naked! Haha! I can laugh about it now but when she’s screaming bloody murder and throwing her head back or kicking me it’s not so funny. We are also running into sharing and taking turn problems lately but I think most 2 year olds have this problem! Lucy is very helpful. She’s like a little ABA therapist, constantly forcing Leila to engage and even trying to run some therapy programs with Leila. It’s pretty funny! Lucy tries to play with Leila more and that’s fun to see, they like to both hide in the cabinets under the fish tank. Lucy will knock on the wall and Leila will say “hello!”… it’s really cute.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We have a couple parties this Saturday, pretty much back to back. I am hoping that Leila does well and that I do not stress out. Both parties will have a lot of people there!! Wish us luck!</div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com1tag:blogger.com,1999:blog-4493298819106624276.post-10598720309312609672010-11-19T15:32:00.000-08:002010-11-19T15:32:30.347-08:00Support Groups and ProgressWell Chris and I went to our first support groups over the past week. We went to a family support group through Cornerstone church this past Sunday and met 3 other families with children living on the spectrum. Two of the families have older children both successfully mainstreamed into regular classrooms. Chris and I were very excited and encouraged to see these older kids (age 6 and 10 I think) and it gave us a little more hope for Leila and what she could be capable of. I went to a support group tonight on my own. The Livermore Moms club I belong to has a sub-club for special needs/learning disabled children. It was so NICE to meet with other mom's in the same situation as me. We talked about our kids, shared resources, cried a little, laughed a little. It was awesome. I'm looking forward to the next meeting!!<br />
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Leila had a great week. After the stress and trauma from last week I think she is (and I'm probably jinxing this) okay with therapy again. I think she started to associate going into the playroom with what happened last week. Natalie, Leila's ABA supervising therapist, and I discussed getting all 3 therapists on the same page. Natalie will observe all 3 therapists and then have them overlap each other. They say that exposing her to different styles of running programs, different therapists, etc. is good for Leila. Too much of the same thing over and over again can be bad for Leila too I guess.<br />
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On another note Leila is repeating so many words!!! She has made huge progress here. When she first started her therapy over a month ago she had maybe 6 words now she has over 25 in any session! She still cannot use most of them to communicate but we are working on it. Leila's speech therapist really emphasized with me narrarating everything I do and she does. Like, "I'm making breakfast", "you're having oatmeal", "you're sitting down", etc... it's kinda annoying to talk that much but her speech therapist says the more I talk the more I expose her to new words.<br />
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We also had a dinner training the other night with Natalie. The training did not go very well. We are trying to get Leila to have at least one bite of everything on her plate and sit down during the whole meal. So to begin we are trying the eating thing because that's more important then sitting. I tried to make a meal that I knew had things she liked and things she didn't. I don't think she really ate anything that night. It was very stressful. You know what she wants, you know why she is so upset, but she can't tell me. She gets so angry she bites what is near her. Like a doll or a foam letter. Thankfully not us yet.<br />
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I continue to have mini panic/anxiety attacks every time I think about Leila's future and schooling. Especially after attending the Mom's Club support group. The struggles and hoops you have to jump through for a special needs child seems overwhelming. The fear of the unknown and letting go of control over Leila while she attends school is hard too. I want to be able to keep her in my safe little bubble where no kid/adult gets frustrated with her or is mean to her. I know this is part of growing up and figuring life out but I have such bad "mama bear" syndrome with her it's going to be difficult. Both Natalie and Shannon, (our case manager) agreed that it would be hard for me but have tried to reassure me that this is what will be best for Leila and the services provided to her will be outstanding. So I keep trying to remind myself of this every time I start to stress about letting go of my baby.Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-74343906475073587862010-11-14T21:04:00.000-08:002010-11-14T21:04:53.229-08:00Great Article to shareChris and I have gotten a lot of friendly advice since Leila has been diagnosed. I have learned that many people have such a stereotyped view of autism. I admit I used to too. When I say Leila is autistic I often get, "Really? She doesn't seem autistic to me." Ughh. I have learned that autism is not just the kid in the corner flapping their hands or Rain Man. Autism is soooo broad and covers such a large spectrum of children you cannot fit them into neat categories. <br />
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So, with that being said, a lot of the advice, questions and suggestions we have gotten have to do with Leila's diet and immunizations. Chris and I stand by our decision to have our children immunized. We believe in protecting our children from harmful diseases. We choose not to put Leila on the gluten free/casein free diet. We do not believe that Leila is a candidate nor would she benefit from this diet. I have done a lot of research on these two topics and have talked with our ABA supervisor and a developmental psychologist about our decisions and feel confident in the choices we have made. My sister sent me this article from the Scientific American and I think it summarizes perfectly why Chris and I are not seeking alternative treatments for Leila. Please read it if you have the time. I think everyone could stand to be a little more informed about autism. There is so much to know.<br />
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<a href="http://www.scientificamerican.com/article.cfm?id=desperate-for-an-autism-cure&sc=emailfriend" target="_blank">http://www.scientificamerican.<wbr></wbr>com/article.cfm?id=desperate-<wbr></wbr>for-an-autism-cure</a>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-38425991469524555032010-11-10T22:07:00.000-08:002010-11-10T22:12:52.265-08:00Leila's ABA therapyLeila’s ABA Therapies<br />
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Leila’s first therapist shows up at 9:30 in the morning. Right now she only has a T/W/TH morning therapist. Her M/F mornings have not been filled since two weeks ago. Apparently ABA therapy has a high turnover with a lot of “just out of college” people filling the positions. I would think it takes a very special person to have the patience and tolerance to work with autistic children and stick with it for a long time. <br />
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So the therapist shows up and then goes through Leila’s binder to see the previous therapist’s notes. Throughout the session the therapists keep notes on what Leila says, how many times she says it, what reinforcers worked, what type of behaviors and how frequent, how many tantrums… etc. This takes anywhere from 10-15 minutes because they also decide what programs they will run and prepare their sheets to fill out during the session. So the therapist will take Leila into the playroom and that way they can use our toys/books and then some bring their own toys/books. Leila also has a special box of toys that are only used during her sessions as “reinforcers”. Meaning she has to do something in order play with them (yes, this is a cause of a lot of tantrums during her sessions). A few of the programs they are doing right now are a matching program, an echoics program, and a motor skills program (like stand up, sit down, one arm up). They then take the last 15 minutes of the session to fill out any more forms in the binder and record any data in their charts.<br />
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Leila’s morning therapist is Sonja; she is also the lead therapist on Leila’s case. She has been with the PFCA for the longest. She is strict with Leila. This morning Leila did NOT want to go into the playroom with Sonja. She became so upset that she started choking, causing herself to throw up. During this I am standing in the kitchen not sure of what to do. Should I interrupt? Would that compromise the therapy? Back and forth, back and forth. Crying myself. Finally, Sonja called me in after Leila threw up. Automatically I comforted her. Leila kept telling me “color, color, color” because at the end of every session she comes out and colors. I had to tell her “Leila you are okay, you cannot color right now”. My heart was just breaking. The thing that gets me too is the therapist said when I walked in “I think she might be sick”. So I said “No. She is not sick. She is so upset she is choking.” Stupid. So Sonja asked at that point if she did things differently then the other therapists. I gave her a look and said “Well, yeah. You do.” We then had a conversation about what she was doing differently and what could be done. I also called the supervising therapist and left her a message with my concerns.<br />
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At a certain point you have to ask what’s too much? I will not let Leila get to that point again. I will walk in next time to calm her down. I don’t care if it compromises the therapy. I don’t care if it reinforces her tantrum. I won’t let her feel that way again.<br />
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On a different note we had Leila’s transition meeting for when she turns three and gets turned over from the Regional Center to the school district. We met with the Croce elementary school therapist. She explained the whole assessment process and what Leila could qualify for. Leila has two assessments, one in January and one in February. She could potentially start school at Croce the last week of March after she turns 3. She will go everyday and it could be a half day or a whole day (8:30-2:15). Half the day would be ABA therapy and half preschool. That’s more school then Lucy has. Croce has their own wing for their special needs program. It is fenced off from the regular elementary and has 5 classrooms (3 mild to moderate classes, 1 severe, and 1 for speech only) and their own playground. I have heard nothing but good things about the program. All of their employees are ABA trained!! I am excited for Leila to start but I am hoping she will only need the half day program. They said I cannot co-op. I cannot imagine letting go of her for a whole day. I know it would be what is best for her but I can’t stand to think about it yet. That’s a long time to be away from me.Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-1619304606672369632010-11-02T23:52:00.000-07:002010-11-02T23:52:30.826-07:00Affection<meta content="text/html; charset=utf-8" http-equiv="Content-Type"></meta><meta content="Word.Document" name="ProgId"></meta><meta content="Microsoft Word 11" name="Generator"></meta><meta content="Microsoft Word 11" name="Originator"></meta><link href="file:///C:%5CDOCUME%7E1%5CCHRISP%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml" rel="File-List"></link><o:smarttagtype name="place" namespaceuri="urn:schemas-microsoft-com:office:smarttags"></o:smarttagtype><o:smarttagtype name="City" namespaceuri="urn:schemas-microsoft-com:office:smarttags"></o:smarttagtype><style>
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<div class="MsoNormal">I don’t know if I should get this personal in this blog but I’m hoping that typing my thoughts down will help me to relax and be more positive about Leila. Sometimes I worry that Leila will stop being affectionate. She’s already selective with hugs and kisses and it seems lately that she is even more so with me. I made her angry last night because I kept giving her kisses in her bed. She fussed and then turned her back to me. Sometimes it’s really hard to accept this about Leila. That she will always be careful about affection. </div><div class="MsoNormal">She’s been this way since she was a baby. She was awake all the time and preferred to be in her swing than in my arms to be rocked to sleep. I should say that within the past year Leila has become increasingly affectionate. For awhile she’d let me rock her to sleep before we gave up naptime. She will sometimes just come up and give me a hug or a kiss, she does let me soothe her, and she does prefer me over others. I take advantage of these times when she is spontaneously affectionate. Natalie, our <st1:city w:st="on"><st1:place w:st="on">ABA</st1:place></st1:city> supervisor said they have exercises they can do to help Leila be more comfortable with affection. They take brushes and run them all over the child’s arms, legs, and face and they relax. I hope that Leila will one day be able to freely cuddle with me and I hope to hear her say that she loves me. It’s hard to not think that I created this. Was I not affectionate enough with her? Did I pay too much attention to Lucy? Should I have held her instead of putting her in the swing? I run through the same questions every day. I try to remain positive about Leila. But sometimes my thoughts just bog me down. I should be happy that my child is happy and healthy. She is not dying, she is not sick. I guess I am just still mourning the loss of that “normal” child. It’s still incredibly hard to accept right now. Since Leila was born I’ve always said in 3 months it’s going to get better… I’m still saying it. </div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com1tag:blogger.com,1999:blog-4493298819106624276.post-51264065658264555202010-11-01T21:51:00.000-07:002010-11-01T22:07:35.503-07:00Leila is starting to communicate<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJIR_d2nlHhD7131FNYAN2hdL3RzjEFIs-f3yY3kb1ctuUmSDBTZl3qoXyHl1v6yUrf1ecDS4mGwU3VK0Fp1HPtOoU3CsF0mlWaavwXYZPC_EeJaspi-SwN_YcScnYaLDi6xz-vdpGj5Rw/s1600/IMG_6482.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJIR_d2nlHhD7131FNYAN2hdL3RzjEFIs-f3yY3kb1ctuUmSDBTZl3qoXyHl1v6yUrf1ecDS4mGwU3VK0Fp1HPtOoU3CsF0mlWaavwXYZPC_EeJaspi-SwN_YcScnYaLDi6xz-vdpGj5Rw/s320/IMG_6482.JPG" width="227" /></a></div><br />
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Over the past two weeks Leila has shown significant improvement in her communication with us. Now, when Leila wants something she points to it and says "look". So, for example, at dinner tonight Leila wanted to sit in Chris's lap. When Leila got into his lap she then pointed to her plate across the table and said "look" so we handed it to her and she was happy. So, we'll take it! She also communicated "open" last night while trick-or-treating. She kept handing me her lolly pop and saying "pen" I finally figured out that she was saying "open" just pronouncing the "o" very quietly. I guess it's because of the way I say it to her... I tend to emphasize the end of words I guess. The last word she's communicating is "more" she shows us the sign for "more" and sometimes says it. Her favorite book right now is Good Night Dinosaur so when I told her we were all done she signed "more" to get the book back. So, of course I gave it to her :)I am trying my best to emphasize using sign language with Leila. Every word I say I use a sign if I can. Like: "more", "up", "all done", "help", "open", "food", "drink", "please", "thank you". <br />
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What would seem minor to some people these are HUGE steps forward for us. You know, the best example I can give of a HUGE step happened last Thursday when we were at MOPS (Mothers of Preschoolers... put on by a church here in Livermore and the Mom's go into one room and are fed breakfast, have a speaker, and then either a craft or discussion while the kids are in childcare - it's really awesome) we dropped Lucy off at her class and Leila got upset and didn't understand that she was going to a separate classroom. I managed to get her over there and once she calmed down she walked into her classroom, waved and said "hi". So awesome, I almost cried (well I got teary eyed). That was the first time she has ever done something like that.<br />
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We had a great Halloween. Lucy's preschool had a carnival Friday that Leila got to go to and she went nuts running around the building. Saturday Chris and I had an adult party to go to and Sunday night we had a kid party to go to. Lucy is of course a pro at trick or treating and once Leila figured out that she got a treat every time she walked up to a house she got the hang of it. Who can resist a little clown just standing there staring at you?? There were a lot of other two year-olds at the party too so it was good for Leila to be exposed to kids her age. It's amazing the differences. These kids are speaking in sentences and I'm happy about Leila saying "hi". I really hope that Leila can soon speak to me the same way the other two year-olds where talking to their Moms. You never realize how important communication or just speech is until your child can't do it. I think I totally took advantage of how articulate Lucy was at this age! It makes me appreciate and cherish all the little ways Leila is growing and improving.Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com0tag:blogger.com,1999:blog-4493298819106624276.post-34992799017882511802010-10-25T22:33:00.000-07:002010-10-25T22:54:03.650-07:00<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikwxwF1_bN-qZNGHzjnLItOnS2tOChNoqEx_WzynjhbLm3EezHG59hCnJXhRmUny3DTs6gcKK2vHxsU232zgI_VZ6kTUn2cVUEBPofsXczcc700mCfo5t-wE-bRtyJUBIpC8jnsoFfUAiq/s1600/IMG_0778.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a></div><object height="385" width="480"><param name="movie" value="http://www.youtube.com/v/34QZTZo7M4s?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/34QZTZo7M4s?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br />
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<b>Welcome to our blog about Leila! I have attached the first two e-mails I sent out when Leila was originally diagnosed:</b><br />
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<div>Hi friends and family,</div><div></div><div>Most of you are aware of the process we have been going through to get Leila into speech therapy. We finally have made great progress with the Regional Center. On Tuesday we had a speech therapist come to the house to assess Leila. This was our 3rd speech evaluation and the most informative. The speech therapist assessed Leila to be at a 12-13 month communicative level, a significant delay. In order to receive services from the Regional Center her delay had to be 33% in two areas or 50% in one, obviously Leila was 50% delayed so once we fax our insurance's denial letter of therapy coverage we can start Leila in speech therapy. Today we saw two developmental psychologists. After about 2 1/2 hours of different testing and a parent interview the two psychologists gave us their opinions. Not a diagnosis, but what their suspicions are. They both agreed that Leila's development has taken an "atypical" path and agreed that she is mildy autistic. They used the term PDD <a href="http://www.autism-society.org/site/PageServer?pagename=about_whatis_PDD%C2%A0" rel="nofollow" target="_blank">http://www.<span class="il">autism</span>-society.org/<wbr></wbr>site/PageServer?pagename=<wbr></wbr>about_whatis_PDD </a> . Leila will have to have further testing to determine where on the scale she lies and to get a "specific" diagnosis. The autism evaluation will take place in the next week or so and in between we have been asked to take Leila in for a check-up and for genetic testing. They would like to see if there is a cause for the autisim and the genetic testing may be able to pin point that for us. We would like for it to not be genetic so we are keeping our fingers crossed. That appointment is on Monday. As for now, she does qualify for free speech services and developmental services.</div><div></div><div>The Regional Center has been awesome. We have been assigned a case manager and she is very helpful. Should Leila be officially diagnosed through the Regional Center programs and family support will be open to us at no charge. She will have many opportunities for growth and development with the Regional Center's help in these next few months.</div><div></div><div>Obviously, I am upset. I cannot help but feel like a failure to my child. It is in my nature to be easily guilted so you could imagine the guilt I have right now. I keep running through my head things I could have done wrong during the pregnancy and during her first year, I just cannot help it. My sister said it was okay to cry and that I am allowed to have a type of "mourning" period for Leila. Bottom line, and this sounds childish, I don't think it's fair- not at all. I'm sending out an email because I've already cried a lot this week and I don't want to be on the phone all afternoon crying some more. Sorry... :)</div><div></div><div>We will be sure to update everyone on Leila's progress and once we get our official diagnosis. </div><div></div><div>Thanks everyone for your support.</div><div></div><div><b>The second email I sent out:</b></div><div></div><div><div>Hi family and friends,</div><div></div><div>A lot has happened since my last email about Leila. We have had Leila assessed for ABA (Applied Behavior Analysis) therapy (<a href="http://www.pacificchildandfamily.com/index.php/programs/autism-and-related-disorders/" target="_blank">http://www.<wbr></wbr>pacificchildandfamily.com/<wbr></wbr>index.php/programs/<span class="il">autism</span>-and-<wbr></wbr>related-disorders/</a>) and she starts next week. Her schedule will be Monday through Friday 9:30 to 11:30 then a one hour break and continue from 12:30 to 2:30. This will all be done at our house with a morning and afternoon therapist. Leila has also started her speech lessons, two half hour sessions each week at the School of Imagination's Happy Talker Program (<a href="http://www.happytalkers.com/index.html" target="_blank">http://www.happytalkers.com/<wbr></wbr>index.html</a>) on Mondays at 3:30 and Thursdays at 3 over in Dublin. We had originally had a speech therapist come to our house but it was not a good fit. The Regional Center sent us a woman that had no experience working with autistic children. After our first speech session I requested a transfer to the Happy Talkers Program and we have been very happy with them. This Thursday Leila has her "official" <span class="il">autism</span> assessment. This will be her longest assessment - it will last 3 1/2 hours not including breaks. I have been told that it is quite intense and that the parent interview is extensive. At this assessment we will learn were Leila is on the <span class="il">autism</span> spectrum and receive a diagnosis. Meaning, an actual paper report detailing the severity of her <span class="il">autism</span>. I have been dragging my feet, for various reasons, to get Leila's genetic testing done so I don't have any results for that.</div><div></div><div>We are doing better emotionally. I would say that Chris is happy that we have a plan of action for Leila and that helps him. I still struggle, especially when we hang out with other two year olds. Then the differences between Leila and other children becomes more apparent and it becomes especially hard for me. I am fully aware that it does Leila and I no good to compare her, but I do. I am happy to have a plan for Leila and anxious to start her ABA therapy. Leila babbles all the time and has many words so I am ready to be able to understand her and for her to use her labels as forms of communication. On a good note, Leila has taken a renewed interest in Lucy. She copies her a lot and follows her around. Leila still needs her alone time but she is engaging with Lucy more and more. One night in Lowe's we saw Leila run up and give her sister a hug. A huge and very special step for her.</div><div></div><div>I will send out another email after Leila's appointment this Thursday with more details of her diagnosis. I am nervous for the appointment and hope it goes well. </div><div></div><div><b>Since this last email Leila has started ABA therapy and has adjusted well to her busy schedule. She has four total therapists. Two morning and two afternoon. I like them all :) Leila was officially diagnosed with Autism Spectrum Disorder about 2 1/2 weeks ago. Unfortunately, there is no scale for where a child lies on the spectrum. So we cannot say officially that Leila is mildly autistic... etc. </b></div><div></div><div><b>The ABA was hard for me at first. I struggled with Leila crying a lot throughout her sessions, she would leave the room to look for me and I would have to usher her back to the playroom to continue with her therapy. I did not want to compromise what the therapists were trying to teach her but at the same time was falling apart at not being able to comfort my child. I've since become more aware that when Leila is upset she is not hurt, they are not hurting her, she just cannot communicate that she doesn't want to do something. I still hurt when I hear her crying though. What the therapists are teaching Leila are ways to communicate her wants and needs. They use a system called PECS http://www.polyxo.com/visualsupport/pecs.html to help Leila communicate. They are also helping Leila to respond to her name, give eye contact, sit cross legged, match animals... etc.</b> Anyway, it is late and I could go on and on. That's why we started this blog after all!</div></div>Jessica Patrickhttp://www.blogger.com/profile/02346599616219946773noreply@blogger.com4