This post was submitted by RDI mom and consultant, Kathy Darrow.
“You would know” were the words I heard from the neurologists when I took my 3rd born to his office before he was 18 months. I could no longer ignore the obvious. I knew the signs since I had heard the words about my 2nd born, “Your son has Autism”, 3 years prior. Of course I knew even before his first birthday. Jesse was about 8 months old when he started crying in the back seat when I made a turn to go home. It hit me like a ton of bricks. He kept crying when I made different turns because he knew the 1 way I am supposed to go and if I didn’t, the tantrum came. I put that in the back of my mind as I kept telling myself, “don’t compare, don’t compare!” An important thing to remember too was my internal struggle to remember what is *typical*.
My last born was diagnosed with autism, and my first born was at this point 8 years old, and many were telling me that all kids are different! So for an amount of time I was in denial, fueled by well meaning friends telling me he is fine. As time went on I switched him to stage 3 baby food , and he would constantly gag. He gagged at everything…and he had enough delays where I knew it was time to call in early intervention….yet again.
Geez, seriously, again!!!???
Of course at this age no one wants to say, “Hey your kid has some issues”, so everyone just smiled at me as I was the mom freaking out. Their strategies to crumble up crackers in baby food etc actually made Jesse worse, then shunning away from any food that I wanted to try and feed him. It was actually a relief when the neurologist said those words to me (you would know)…as he also diagnosed my older son. YES…thank you..I am not crazy!!
As the months went on, it became clearer that Jesse had many delays; he still could not chew, and he just simply would not engage. With my older son, at least I could get SOME engagement. With Jesse…nothing. He was looking right through me. The first two clips of the following video shows this, and the third clip is of Jesse with my mother. I took the sound off because my mom is just jabbering away but I wanted to spotlight how Jesse was just looking through us…and, he has a huge mound of fruit bar on the roof of his mouth because he could not chew it and would just suck it. That is the only thing I could get him to eat. Also in the video, you will see him at the playground crying, on Halloween crying, and in therapy, stimming. Pretty much that is what Jesse did, he either cried or was busy with his self stimulatory behaviors.
Yes, I did leave with a diagnosis that day of severe infantile autism. As he talked to me in the office I was used to hearing the typical because I had been through it before, but the difference here was he was quite clear that the severity will probably mean he will need to be institutionalized. He told me to please understand that he will probably never talk because of autism and his oral motor issues. He said he was sorry, and had the normal pity look on his face as I started to walk out of his office. His last comments to me were, let me know if you need any medication for him.
With my first born, I cried. But with Jesse, I cried, and cried…and went into an absolute place of despair. A few weeks later I found out I was pregnant…and then I cried some more. I told absolutely no one of my pregnancy until at about 4 months when a friend flat out asked me. Before that time I tried to tell a few people but would just break down. I was carrying differently so it was easier to hide but eventually I had to come clean.
During this time I got Jesse’s therapy started as EI funded it…but after a year there was no progress. We tried implementing Pecs, we brought in a oral motor specialist, which did help ( She was Fabulous) She did tell me that I had to prepare myself that Jesse may never speak. ( she was also an SLP). If you can picture me with my hands over my ears, then that was me…maybe not visually but definitely mindfully. When Jesse was 3.5, his chewing was emerging, his language was zero, his stimming was constant, and his tantrums were many through the day. I met someone who was referred to me by a friend because her son was just diagnosed. I gave her support but in the coming year I would talk to her and she told me about something she was trying called RDI (Relationship development intervention). I was sort of like, Uh huh, ok as I had a 1.5 year old, 2 behavioral programs running in my house, and a 10 year old. As she talked, I listened, and though I didn’t say much., you can bet I googled RDI when I hung up. I knew that Jesse was making limited progress with his current program, and my older son was a huge behavioral problem in his school.
I joined two yahoo groups that talked about RDI and started asking questions. I found out that I could go on the RDIconnect website and chat with Dr Gutstein himself on Tuesday nights, which I did. I was able to get my questions answered and I purchased the book Solving the Relationship Puzzle. Then I saw a 2 day conference advertised, so along with two therapists, I took a trip up to Boston where my eyes were opened to what both my kids needed. When we came home we started implementing RDI strategies and we all noticed a huge difference in Jesse right away. He was still hard to engage, but there were glimpses of engagement, and my hope was restored.
What we did then was flood Jesse with framed RDI activities and increase his opportunities for meaningful engagement. Since he was hard to engage, we did this many hours a day. The next video you will see is a progression of interactions with Jesse. You will notice, especially in the beginning, that toys were not used. He would stim on them and they were more reinforcing then our attempts to engage.
We even had to remove non toy objects in the beginning as he focused on objects instead of people. We continued to foster Jesse’s decision making ability to maintain engagements (we were not doing all the work), then we added back in objects and toys. This is why many times we typically did things around the house, because we wanted the *experience* to be spotlighted over an (entertainment) factor. The first clip is with his oral motor specialist. As we were working on specific objectives with Jesse, he started to understand what language was for, and he wanted to talk. His teacher was so excited to see this, and this video is so precious to me. She has told us she would not have believed it if she had not seen it with her own eyes. After that clip is a few clips of RDI.
As Jesse started to make incredible progress, we started to see obstacles that needed to be addressed. He could engage but the stimming was still constant…and we would joke around saying he was a great multi-tasker. Typically, self stimulatory behaviors decrease as children on the spectrum form connections of engagement and their brain prefers relationships and experience over being in their own world. We were doing RDI for a year and a half and because we were able to peel away some layers and were building up Jesse’s ability to be an apprentice, and me a guide, I could see now that there were some health obstacles that needed to be addressed. Jesse had horrible gut issues. He was able to conquer chewing, but as we conquered different things, some other obstacles came to the forefront. It was time to address his gut. This is when I turned to the Bio Medical community for help. I improved Jesse’s Diet, ( Now that he was chewing) and started him on Enzyme therapy and Probiotics. I knew I had to get his gut healthy, because what I was seeing in his stimming that remained was a reaction to his bodies inability to digest his food that he was eating. I then added Vitamins, Amino Acids and Fish Oil…and to keep Jesse regular Aloe Vera Juice.
What this did was remove another obstacle in Jesse’s program to restore his developmental milestones and we continued to make fantastic gains from there on.
Today, Jesse is 11 years old and has graduated from RDI’s Family Consultation Program. The little boy at 18 months who was given such a poor prognosis, now enjoys his life with his family and friends, enjoys music, hiking, and swimming, etc. His language has emerged beautifully as experience based and not just instrumental on his needs or wants. He is interested in our perspective and can share his thoughts with us. I keep meaning to call that neurologist for a visit…to let him know to stop telling parents what their child’s future will be.
Here are a few clips of Jesse from the beginning of his program till today. As I like to say when it comes to Jesse…Take THAT Autism!!
Kathy Darrow has over 10 years experience with autism and six years in RDI; first as a parent and three years as a consultant. She has a passion to help families with children on the spectrum and is excited to watch as children and young adults involved in the RDI program become increasingly competent and resilient in their social world as they progress through that *second opportunity* for development! You can email Kathy or visit her website.