Friday, March 21, 2014

Autumn's Progression

It was this time last year that I had made the phone calls to Early Intervention Services after Autumn wasn't saying any words. Actually, she stopped saying "mama", "dada", "ball" and "bye-bye". I had started to suspect something more, but wanted to rule out any other possible underlying issues, such as hearing loss, before further pursuing a developmental delay evaluation. 

I must say that everything about a Early Intervention (EI for short) has been wonderful from the start. Her first coordinator was extremely helpful in assisting me through the navigation process of EI. 

Within two weeks of my original phone call, we had her initial evaluation for services. The initial evaluation they use to determine if a child qualifies for Early Intervention services is the Battelle Developmental Inventory, which assess five domains for development: Adaptive behavior, personal / social skills, communication including expressive and receptive language, gross and fine motor ability, and cognition. They score using the bell curve/standard deviation with D-scores and Z-scores (you statistics pros will understand this). Autumn scored -1.80 in her communication. That alone had her qualify for speech. She also scored low in cognition because of "non-compliance". The other areas were pretty typical for her age/level of development.
At our second meeting to go over her evaluation is when I found out that she qualified for Speech and Developmental Intervention (DI). When hearing this news,  I immediately started to cry because I felt like I was failing her as a mom and not providing her with enough care. After all, I was a stay-at-home mom during the day and worked as an outpatient therapist during the evening. I had already felt my time being torn due to the pressures of meeting my client's needs as well as trying to be the best mom I can be for my beautiful daughter. So I took the news personal.

Autumn began receiving speech therapy (ST) in April of 2013 and then DI in June 2013 because I decided to wait to start DI until Autumn's tubes were in place to see if her behaviors would change once she could hear more clearly; they became worse. She started off at once a week for both. Then once her DI joined our team, she noticed a lot of sensory issues with Autumn that we had no clue she even had like the sporadic running, the need for squeezes/pressure, etc.,. She and her ST suggested that we should have her evaluated for OT once we're settled into the new house. I would've done it sooner, but we were in the process of buying a house and selling our condo and that alone is a story for another day. This was also when I made the appointment to have her evaluated by a pediatric neurologist at the suggestion of her EI coordinator.

In the meantime, Autumn's behavior started to slightly improve. She started to become more engaged but still had a difficult time focusing and saying new words. She also still remained distant from her therapists and had a difficult time transitioning with sharing and following directions, hence the "non-compliance" piece. Once she received her diagnosis, we wanted to increase her therapies and incorporate an OT for sensory issues only. She was also tested by her therapists within the five areas/domains mentioned above for the Battelle.

At the time of the testing (end of August, so after 4 months of receiving speech therapy services) she scored the following:

Autumn: 25 1/2 months of age

Self-Help: 18 months
Social/Emotional: 24 months
Fine Motor: 22 months
Gross Motor: 23 Months
Cognition: 24 months
Communication: 6-9 months receptive language (listening/understanding) and 9-12 months expressive (using words, talking)

It was very difficult for me to hear about her speech. I knew that the self-help would be lower because she didn't use the potty and I wasn't allowing her to walk down stairs. Her social/emotional and cognition is/was her age because she can do puzzles and play well perfectly alone, but allowing others into that circle, well then that's where we have the problems. When Autumn is focused, she learns and does exceptional.

At her September meeting, the team (my angels), pleaded to get an OT eval for Autumn's sensory issues because this is what we all stated would happen once Autumn started having OT:
An OT would implement a sensory integration diet, which means the following:
Autumn will be able to self-regulate her sensory needs by the activities outlined in her sensory diet, which will then lead to her being able to focus, then with focus will come the less negative behaviors/tantrums and more expressive/receptive language. Following Along? I thought so. Hence: OT= less problematic behaviors = focus/attention = higher expressive/receptive language.

It took a month to get her an OT eval and then a month later to get her OT. Luckily, her DI and ST have some OT experience implementing some of the OT techniques outlined and with their increases in therapies, things were moving along well. In addition, during this time, Autumn also started to get into watching Signing Time. Her DI was kind enough to make us copies of the signing time videos so that we can watch them whenever we wanted. I put these on for Autumn often because, I admit, I enjoy watching signing time and learning sign language as well. Autumn started signing and saying new words daily because of her therapies and watching signing time. I also made sure to provide follow-through and implement the techniques I had learned during her sessions. I would try many different activities with Autumn: flash cards, puzzles, reading/identifying objects in books, shapes, colors, coloring, sensory activities such as using the tunnel, pushing/pulling, parachute time, singing, dancing, identifying body parts, shaving cream/play dough, and other things to help her become more integrated into her own surroundings and of course to help promote the expressive and receptive language.

I also never give in or back down from a tantrum. I allow her to get frustrated, console her, but we push through. Thus, Task completion is the key here. Granted, if she has a horrible day or is becoming overwhelmingly frustrated, we will shorten the task. Her DI decided to implement an ABA book mainly for non-compliance because Autumn has a difficult time focusing and staying on tasks. Within the past few months since implementing ABA (not your standard b/c Autumn would become very bored and annoyed), she can now point to what she wants, she makes eye contact (mainly in the structured setting), she can identify different objects, and she's using her words more.

Recently, we had the yearly Battelle evaluation by a therapist through EI and being as honest as possible: she bombed it and scored horribly. Why? Because of non-compliance. Most individuals on the spectrum do not, and I mean, DO NOT welcome change within their worlds. This includes new people like the lovely therapist who did the evaluation. Her therapists prepared me that if she doesn't do well to not take it personal. They do this eval again basically for data collection. So when I saw the updated scores compared to last years, a part of me LOLed because they were horrible! She didn't want to even stack blocks! Something she can do without any problems, but since she refused to do it, she didn't get the credit (just like school will be someday). 

Her therapists also tested her again since it was time for her six-month eval. I am pleased to say that she's made HUGE strides in the past six months. HUGE. 
Autumn: 31 1/2 months of age

Self-Help: 22 months (but scattered skills that are 30 months, it's her not being potty trained that's holding her back)
Social/Emotional: 33 months
Fine Motor: 27 months (she couldn't draw a circle at the time of the eval, now she can)
Gross Motor: 30 Months
Cognition: 30 months
Communication: 18-21 months receptive language (listening/understanding) and 18 months expressive (using words, talking). 

We had her yearly meeting yesterday and all of the goals we had initially set a year ago and even six months ago have been achieved. I couldn't be happier with these results. Granted, there is much need for improvement still (isn't it for each one of us), but these baby steps are leading it's way to huge leaps and bounds. Autumns new coordinator was very impressed with her progress and even hinted at lowering her therapy sessions but I declined as I feel like she's been doing so well why change something that's working? Plus, with the snow, sick, and vacation times, her therapists don't always come to all seven sessions during the week. Having the extra sessions in place makes up for ones that are missed due to the above.

Autumn has four more months left of EI before it's time to move forward elsewhere. I cannot express the gratitude that I have for our team of therapists who've implemented many tools and techniques that have helped in so many various ways. I can't imagine what Autumn might be like if I never had her evaluated a year ago for EI. As difficult as it was for me to swallow my own pride at the time, I am grateful that I went down this path now knowing that my daughter does have an Autism diagnosis and despite me wanting this for her, she will need the extra push in life, maybe more so than some, in order to flourish. She's already proving to us all that she's more than capable of trying anything and excelling. That's my daughter.  

After EI is over, there will be private therapies and most likely, special ed preschool, but that's a post for another day. 

Raising my coffee mug to cheer: Here's to Belle's continued progression! My alphabet obsessed, bookloving, little girl!



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