Joe and I attended a presentation on an organization that helps provide respite in different ways to parent who have children/adults with special needs. The presenter talked about how it’s common for these families to actually lose friends and family over time because of their child with special needs. She asked if that was true for any of us attending the presentation. Honestly, it’s the complete opposite for us. Our support system has done nothing but grow since Courtney’s diagnosis and couldn’t be more appreciative.

I certainly felt the support this past week. Several have asked how Courtney’s IEP went on Thursday. It went well. They couldn’t talk enough about the explosion of progress she has been making the past two months. It was so great to hear. The areas she is taking off in are the areas that she is being taught 1-1 and also receives 15 hours of therapy working on the same things. What we also heard is she still needs adult assistance to be a part of the blended part of her day. She needs someone to help her transition and be a part of group activities. I’m not surprised by this and it doesn’t bother me that she needs this. My problem is, In my personal opinion, they are restricting her more by this placement. It is my belief that putting a child in a less restrictive environment with 1-1 assistance is actually more restrictive than putting a child in an environment that is more conducive to their learning style and don’t need as much assistance to participate. If she needs that much assistance to be a part of the class, is it truly an appropriate placement? Our advocate said it best. “Courtney is a class of 1 in a class of 12”. She’s not truly a part of the class.

She’s progressing and we couldn’t be happier. We expressed our continued concerns but will continue with same placement as next year because of it being the only option.

I am so proud of the progress Courtney is making. Seeing this explosion the past 2 months have been amazing. And actually I give a lot of the credit to the elimination of dairy in her diet!

The best comment this week came today and came from a family member. My brother and his wife watched the girls about 2 weeks ago. My sister in law said to me today that she was telling my brother that Courtney seemed different. She seemed happier, more connected and more verbal. Hearing that from someone who doesn’t see her day in and day out just meant the world to me. Thank you, Amy!

Thank you to all of you for being an awesome support system! You are huge part of this journey and can’t do it without you!

Courtney’s annual IEP meeting is tomorrow. It was at last year’s annual meeting that they shocked us by telling us they no longer will have an extended self-contained structured teaching class but instead she was going be in a blended extended day class. I don’t even think “shock” is the right word for how we felt. I was livid! I immediately found an advocate to help us with the fight we were about to embark.

A year later and we can say we have been pleasantly surprised on how well she can tolerate the larger class setting. She continues to be happy going to school and she has handled the longer day followed by more therapy like a champ. All of which we couldn’t be happier about.

So why am I so nervous about tomorrow? Because as much as some things have gone well, I still don’t think it’s the best placement for her. My advocate and her therapists have observed her in the blended setting and in each case, they reported to Joe and I that she is happy but she is not being challenged. She is not an active participant in the blended part of her day. In each of these observations she wasn’t expected to do anything but sit during the circle time activity, she could leave centers as she pleased even though the “typical” students had to stay for a designated time, and not much fostering of independence in classroom routines. Report like that cause me to question her placement.

“But wait, Erin, you have shared countless posts of the progress she is making…” Yes, she is making HUGE gains. I hear Courtney’s sweet little voice on a daily basis! She handled a huge change in communication systems like a pro! She is starting to follow one step directions! But don’t forget, Courtney is in 15 hours of private therapy. 15 hours of 1-1 therapy that drills her in the exact areas we are seeing improvement in. I am not at all saying school did not help with that. I’m sure it was a combination of school and therapies.

At this point, we don’t expect placement to change for next year. What makes me nervous about tomorrow is that I’m hearing the district is going to follow the inclusion model through out elementary school. She has proven a lot can happen in a year. Maybe this coming year she will show that she can handle more inclusion once in Kindergarten. But in the mean time, I can’t help but worry about the education my daughter is going to receive. So in the mean time, I will continue to be the advocate that Courtney deserves. I don’t want to be, but if I have to be that sleep deprived, non-caffeinated special needs mom that comes to all meetings with boxing gloves (aka: my awesome advocate) then I will.

I love how the photograph of this big moment includes her T-shirt that says “Till All the Pieces Fit” since feeding is a huge part of Courtney’s puzzle and we are slowly but surely making that piece fit in the puzzle!

Let’s start with nut milk. We found out from an allergist that Courtney has a sensitivity to dairy just as I’ve suspected. We took lactose out of her diet a while ago but actual dairy is different. Milk that is lactose free still includes the milk protein. Allergy testing showed it was a slight sensitivity so some people said making the big switch to dairy free may not be worth the fight because with the slight sensitivity we may not see any difference. After a lot of back and forth I decided we were going to bite the bullet. Since she is a HUGE milk drinker and can be picky about the slightest change in taste in her food I was worried it would be a hard transition. She proved us wrong! A huge thanks to my nanny who had faith in our little girl and convinced me to try. After a couple weeks of dairy free, I have seen a huge difference in her bloating! Did you know Courtney has a rib cage?!

Now for the limes and oranges. Courtney loves to play with whole fruits and vegetables. She will take them and feel them both with her hands and lips. Today her therapist decided to cut the lime she was playing with and she started mouthing it! I wasn’t home so of course this lead to the following exchange between my nanny and I…

Well, she cut up an orange and sure enough she started mouthing that too. No bites but mouthing cut up fruits gives you so much taste so that is HUGE!!!

Can’t help but wonder if this increase in trying new things is because she feels better now that she’s not drinking a crap load of milk that was upsetting her tummy.

Her allergy test showed a very slight sensitivity to wheat. So…do we dare try gluten free? I do believe that will be a harder change to tackle. Stay tuned for that decision. In the mean time…

LIMES, ORANGES AND NUT MILK, OH MY!!!!!

I’ve mentioned several times that sometimes progress is slow when it comes to milestones and goals with children with autism. In one of my blog posts, a friend called it “inch-stones” instead of mile stones. I love that phrase…”inch-stones”. Describes it perfectly. I feel Courtney’s “inch-stones” are not just “inch-stones” as of lately. These are some big jumps! Words can’t even describe the emotions I feel as I watch her progress. As I have shared in more recent posts, she is saying her colors and letters and the other day she was looking at a number puzzle and identifying numbers 1-10! She is VERBALLY labeling more and more and it is so beautiful to hear!

One of the biggest red flags Courtney showed that lead me to believe she had Autism was her inability to respond to her name and simple one step directions. She also had very little to no imitation skills. Skills that are so important in development and come rather early. At the age of 3 she didn’t have these skills! Well not only is she imitating motor movements now, she is following some 1 step motor commands! Check out this awesome video! I am one proud mommy!

One reason why I love working in special education is because each little step is such a huge accomplishment. These kiddos have to work so hard to make these gains. Then you have the children who are non-verbal and you teach them that they too have a voice with the help of a device.

Courtney had speech therapy tonight. This therapist concentrates on working with Courtney and the family in using her talker. The past few sessions he has pulled out a book and has shown us different strategies on how to use the talker with her while reading a book.

Courtney is obsessed with colors these days. So much so that we have even heard her verbalize her colors. Tonight, after her speech therapist left, she pulled out the book, “Brown Bear, Brown Bear”. (Side note…joe and I weren’t home. The nanny was with the girls during this time.) After reading the book with Courtney, Savannah then put the talker in front of her. Courtney went through the book identifying the colors using her talker.

Savannah shares this beautiful video with me. I had tears rolling down my face as I watched the beautiful video. Nothing like seeing your daughter find her voice!

Today I had to attend a training that was held at another school in my district. The training is called CPI (Crisis Prevention and Intervention). Basically it’s about how to handle situations when children are being either verbal or physically aggressive. I’m not going to go into details about it because not the purpose of this post but does play a part.

Wednesday night into Thursday, Courtney had a really bad night sleep. She woke up some time between 3 and 3:30 a.m. Fortunately she doesn’t wake up much in the middle of the night any more but when she does, it always has the same outcome. She is usually up for a couple hours. For the most part, she can be calm during this time, but sometimes she will get aggravated. Last night there were some moments of aggravation some of which involved her trying to bite and scratch me. Finally at 6 a.m. she fell back asleep. Yep…6 a.m.! Only to have to be woken up for school at 7:30 a.m.

I headed to work feeling beaten and exhausted. I got to my workshop early so sat in the car and googled meme’s that described how I felt. I found myself typing “autism sucks”. I hate when I feel this way because I feel like it sounds like I don’t like who my child is. Of course that’s not the case and I know no one thinks that is the case. Because of autism, my daughter was up for 3 hours. Because of autism, during those 3 hours I had to be on high alert because I wasn’t sure when she was going to try to bite or scratch me. Because of that, autism some times sucks.

Then came the workshop. Because the nature of my job, I am required to attend this workshop. It didn’t dawn on me until a few minutes into it that as many things with my work, this workshop hits home too. We started the workshop of with a pre-test and it included the following true/false question, “CPI is considered a trauma, true or false”. I answered true and shared with the group a personal experience. I told the group about my middle of the night with Courtney. I shared with them that after blocking bites and scratches from my daughter, I curled up with her as she calmed down and I broke into tears because honestly, who enjoys restraining a child who is out of control. You darn right, it’s traumatic!

I get home from the training and Courtney was in distress. We had new windows put in so there was a lot of drilling and hammering going. Courtney’s sensory system can not always handle these loud sounds so she was an emotional wreck. I was able to get her down in the basement. She was screaming as if she was in pain. What is your instinct when your child is screaming as if in pain? You hug or hold your child. I knew full well this wasn’t a good idea because doing that when Courtney is so upset does put you at risk for being bit. I didn’t care. Comforting my daughter came before protecting myself. Well…she bit me. Yep, sometimes Autism sucks.

By the time it was bedtime, I had one exhausted and sensory overloaded child. I cuddled with her in my bed hoping it will make her feel safe after such a long day. Today it sucked but tomorrow is a new day.

There is a sweet little voice in there trying to come out. We are hearing it more and more. My heart literally bursts every time I hear it!

Courtney is finally starting to imitate. Imitation is such an important skill in development. It’s how babies learn everything at the beginning. Courtney couldn’t or maybe you can even say she wouldn’t. It starts with imitating things like clapping hands or touching body parts. She has finally taken it to the next level and will imitate waving/saying “hi” and “bye”.  I say it’s imitating because you have to do it for her to do it. You have to get right up to her, get her attention and wave and say “hi” for her to do it back. Such a huge skill. It always made me sad that people will go up to Courtney and say hi and she had no response. Now, there is a slight chance you may get a response!

Courtney has also shown us in the past several months that she knows most of her letters and all her colors. It is still very hard to get her to label any of the above upon request but if you listen carefully while you watch her play with her alphabet puzzles or her color sorting crayons you will hear the sweet little voice labeling. I wish I could take credit for her learning things. I don’t know how much school or therapy can even take credit for it. I credit youtube. I see all the research out there on how bad screen time is for kids. As much as I agree, I also disagree. I will be the first one to admit Courtney spends way too much time on her iPad. But…she has learned so much from her iPad. She watches youtube videos where people are singing songs about colors and letters. She watches them over and over and over again. That is what taught Courtney her letters and colors! There is one YouTube video she likes to watch where someone is playing with the same color sorting crayons that she has. They label the colors and the objects that they are sorting. When she watches that video, she now grabs her color sorting crayons and does the same thing. Thanks to YouTube, Curious George and Daniel Tiger apps, my little girl has learned her colors and letters and can now show us she knows them.

We are hearing more words but she still doesn’t use words to communicate. She Courtney still needs her talker for that. She also won’t always use the words upon request. But those words are in there. It’s part of the fascination of autism. So much is in that brain of Courtney’s. Now if we can only get it out of her.

There continues to be inch stones but inch stones we embrace and celebrate. We are so proud of our little girl.

Courtney is in a funk again with her sleep patterns. It’s taking her forever to get to sleep at night. Sunday night, it took a car ride at 10:15 p.m. to get her to go to sleep. Then at 4:30 a.m. she woke up ready to take on the world. Two hours later, she decided she needed more sleep but of course at that point, she was an hour away from needing to be awake to get ready for school.  Some how she made it through her 5 hour school day, an hour of therapy, play time at LifeTime fitness while I worked out and a 90 minute appointment with an allergist all with a 5 minute nap thrown in the mix. Yep,  that’s my little energizer bunny.

I dreaded the appointment with the allergist. The idea of spending 1-2 hours in a small room with Courtney and a doctor sounded like pure torture. What is it like taking Courtney to a doctor? Let’s just say she has bitten, kicked and scratched doctors during a simple listen to her heart, ear checks, and even weight checks. So tonight I had the fun job of completely restraining my daughter while they did the scratch test. I decided to put the two of us through this torture because I’m trying to get to the bottom of some of her gut issues. We got our answers. Courtney has a mild sensitivity to basically her entire diet…dairy/milk and wheat. Besides the very few fruits and vegetables she eats (most in the form of puree), her diet consists of items that are made with wheat and dairy and/or milk. I then got to sit and listen to the doctor tell me to try an elimination diet with her. That entails taking items that are made of the ingredients she is sensitive to out of her diet for a couple weeks. Doing an elimination diet is difficult for anyone, but to do it with a child who is extremely picky?! Let’s just say I’m overwhelmed with the thought.

I was so proud of Courtney today. Such a long and different day for her and she handled it like a champ. The picture above is actually from tonight after her doctor appointment. I got to a stop light and turned around and saw her sleeping. I immediately started crying. Tears because I was exhausted from a long day after little sleep, tears because I was overwhelmed with so much information to sort through, tears because I was thrilled that it  was 8:30 p.m. and she was asleep, but mostly tears because my little girl once again proved to me that she is a champ. I love you, Courtney!

I love technology! I love that there are ways out there for those who are not verbal to still communicate. I love that my little girl is finding her voice thanks to technology!

Tonight Joe and I were sitting on the couch with Courtney trying to get her to calm down and go to bed. Her talker was next to her. She used her talker (AAC device) to tell us she wanted milk, which we then gave her and she finished. She then used her talker to say “ice cream”. Which I replied, “you don’t eat ice cream”. Joe replied, “are you just pressing button”? Courtney then used her talker to say “red”. She was definitely trying to tell us something. I looked around to see what was red that she may be wanting. Sure enough, with in her eye sight but out of her reach, was this little red plastic scoop of ice cream. I handed it to her and she smiled.

Tears of joy! One proud mommy!