Early Interevention to Preschool Transition

I started having some concerns early on with Beast, the biggest being that he wasn't talking or babbling. I had expressed concerns at 9 months, 12 months, and at 15 months I made my point clear to my pediatrician and got a referral to Birth to Three. Bubba was delayed in speech, fine and gross motor. There were other things that I feel if we had had Birth to Three wouldn't have been looked over. I was going to stay on the ball with Beast make sure he got Early Intervention. I remember Bubba's frustration with not being about to communicate with us.

Beast qualified for services and we had a great teacher, but he wasn't really making any progress. His ear infections started to come more frequently; finally he got PE tubes. We had concerns that maybe his hearing was being effected by his ear infections. We found out after the tubes and a sedated BAER test that his hearing was good.

We had a team meeting and administered the Modified Checklist for Autism in Toddlers or MCHAT. He flagged high risk for Autism, we sat and talked about the next steps. I made the decision to have an Autism Specific Birth to Three agency come in and do an Autism Diagnostic Observation Schedule or ADOS.

What was it going to hurt?

The very nice Social Worker came to administer his ADOS with a suitcase in tow. Beast was in a really good mood. His current Birth to Three teacher was there for support and to help answer questions. Beast LOVED the suitcase! A little too much; we got stuck on trying to steal it and everything in it. We had to hide it from him to try to get him to engage with the her. I watched her and my son as she tried to get him to play with her, acknowledge her, and take interest with the toys she was taking out of her bag of tricks. She would ask me questions and where I stumbled Beast's teacher would answer.

The evaluation was about 2.5 hours long. At the end of the test she packed up her bag, scored his ADOS, and told me that he qualified for Autism Specific Birth to Three Services. That no decisions needed to be made now and that I would get her full report soon.

I must have looked like a deer in the headlights, Beast's teacher asked if I was ok. There were tears running down my face and I had no control of them. I wasn't sobbing hysterically or anything, they caught me quite off guard honestly. I am not a crier and sure as heck not in front of people!

I was rambling, asking questions not really looking for answers; talking my way through what I just heard.

My son has Autism....

I knew that I needed to call my pediatrician and see what they thought medically I should do. The only reason I knew to ask for a Developmental - Behavioral Pediatrician is because of Bubba and the road we traveled with him. 

I made the choice to switch agencies, we did a transfer of services at the same time as his annual review. This is where I found out what intensive services meant.

Beast would have a team! 

A teacher he would see 5 days a week, a Board Certified Behavior Analyst, Occupational Therapist, Speech and Language Pathologist. His plan could change too to have more members on his team if his Developmental - Behavioral Pediatrician recommendations stated. We would see her in 2 months, which floored me as I know that there are other practices that were booking out 18 months from now!

I met his new teacher and she gave me a bunch of pamphlets about procedures and medical follow up. 

The first reality check I got was from Beast's Birth to Three Teacher, the one that we see 5 days a week totaling 12.5 hours a week.

"Meghan, there isn't enough demand put on him. He has access to too much."

That's when it hit me: everything I thought I knew about Autism was wrong. Not my facts, but my perception of what Autism is and what I needed to change to help my son thrive and learn new skills.

My house was set up with plenty of opportunities for play and choices galore. I have a built in book shelf in my living room and the shelves had ring stacker, cars, trucks, discovery bottles, books....

You name it, and if he wanted it, he could have it.

All the parenting books I have read say create opportunities for play, foster their curiosity, let them explore!

I thought I was doing that. It didn't occur to me that Beast went and played with toys, never asking me to help him or show me what he was playing with.  He has always been fiercely independent, played nicely enough with other kids. His activity level was high; busy boy always on the move. When Beast gets overwhelmed he avoids or leaves the situation. I have always respected his need for space.

It never occured to me that he didn't do any of those things, that those are all ways of communication, social interaction and the fact that I missed his sensory needs gave me horrible Momma guilt.

I had to stop and think about this really hard for a minute; everything I thought I knew was wrong.

I redid my whole house so there were still toys where he could see them and reach them but they were all in containers he could see through now so he had to communicate his wants. All the cupboards got special locks, even the fridge. Making him request with signs he already knew, teaching him more with hand over hand prompting, fighting tooth and nail since having people in his personal space bubble is not his favorite thing. 

We introduced PECS/Picture Exchange Communication System to help him become more specific in his requests. We started with something highly motivating, to teach him just the exchange part. Once he understood the power of the PECS he moved quickly through the early stages. 

Discrete Trial Instruction is not always easy in the the beginning!
Once they learn First and Then, The Token Board, and that they have control over how quickly they move through the trials. Starting Beast really hated it and I honestly had a hard time with it to. He was really upset, sitting is not his favorite thing to do, neither is being confined to one space. He needed us to decrease the distractions for him so he could focus at a task. When he got the hang of what DTI was he flew through his trials!

Beast is willing to work with me to gain new skills with the token board without his teachers. Not confined he sits nicely most days for me; there are some days where he does trials climbing and sliding, but he is able to do what I ask while moving!

The more we made opportunities for communications, along with teaching more ASL, adding to his PECS and Discrete Trial Instruction,  the more Beast communicates. He tells me he wants a yogurt and "open it please." We are teaching him to build sentences with sign language. We use a combination of ASL and PECS and it works well for him.

Beast has become more patient, will allow us to help him hand over hand with new signs and is much more engaged with his surroundings and us! He wants to be in the same room as us, he will go get space if he needs it, but it is only a few minutes not hours. The more demand we have put on him the more he is aware of the world around him, not just his world.

We have been with an Autism Specific Birth to Three Agency for 5 months and the amount of growth I have seen in my son is HUGE! The resources and support I have gotten from my team are amazing.

One great things about having Birth to Three is having people in your corner for the transition Planning and Placement Team Meeting/PPT, they truly have your child's best interest at heart and are an invaluable resource to have.

My Birth to Three team has made a huge impact in our lives, from beginning to end. I have learned right along with Beast on our journey with Autism. I would have been lost without them. They rocked my world 5 months ago they gave me a diagnosis that knocked me out at the knees, ever since then they have given me support to find my feet again. 

Beast ended up with having a team of 7 with Birth to Three!

We had 16 hours of services a week, there have been days where we have had services almost all day. 

We have had awesome days and horrible days. 

While we were in Birth to Three my main goal for Beast was for him to have effective communication that translated to others not just myself. He started with 2 consistent signs and now he has 28!!!! He has 17 that he uses regularly and 11 that he knows, but still needs to be prompted.

PECS, Beast has a book and he uses a combination of sign and PECS he has at least 30 PECS that he uses to request!

Beast met my goal for him while he was in the Birth to Three, which was a short, intensive 5 months.

Beast starts school on Monday, (that is whole different blog right there) I know that he has the skills to be able to be understood, he will have a voice and not need me to interpret. 

My goal for him now is to take this great foundation of communication and build on it. For him to speak in sentences and have more expressive language.

I plan goals differently for Beast right now. There are many and though they might seem small to some, they are huge for us.