Early intervention is so important when you think that your child or a child whom you love has developmental delays. Push for the doctors to listen to you and if your child’s doctor doesn’t listen, find another doctor.
Every parent, whether by birth or adoption, want only the best for their child. They want to see them live to their fullest potential, fit in with the world around them and succeed in every way. When you notice that developmental milestones aren’t being reached, it may just be that they are taking their time. I am not saying to push the panic button. However, if you have a concern, express it, explain it and wait for the answer. If their physician sees no concern, ask them to explain it again.
I have become an advocate for this cause because I live with it every single day. Our grandson, Tyson has Autism Spectrum Disorder, @level 2 requiring substantial support. That is the official diagnosis. He is three now. When he was just a little over 2 years old, we finally found a doctor that was willing to refer him to our local Children’s Hospital Developmental Pediatrics Clinic for further evaluations.
The signs started when he was about 6 months old. He didn’t ever really crawl on all fours, it was more of a “leap-frog” type of crawl. From birth, he had the strength of an ox to hold his head up and when you tried to lay him down to change him, he would twist and turn and place his body in such awkward positions, we didn’t know what to think. Diaper changes were traumatizing for him. The only way to get him to remain partially calm was to sing Amazing Grace to him to settle him while he was being changed.
When he was able to sit up on his own, he would and still does, bang his head and rock back and forth. Immediately we were concerned that maybe he had autism. He wasn’t cooing or saying mama or dada and when he tried to communicate, he would scream inaudible noises. Each and every time we brought our concerns up to his pediatrician, who had been one for over 30 years, we were always met with comments, such as “he has done so many other things early, he will talk when he is ready”. So we decided to trust her judgment. We didn’t know that maybe just maybe she wasn’t the right one to make the decision for us.
At his 18-month check-up, he was very active, wouldn’t sit still for any reason and loved climbing and jumping off chairs, stools, exam tables, but he didn’t like being examined, and his strength would reappear, he would twist and turn and this was chalked up to his age and something that was not a normal day thing. He had mastered walking on his own at 10 months, but still wasn’t showing any signs of talking. Trying to figure out what he needed or why he would cry became a guessing game. It was so frustrating for all of us, but mostly for him. Again, I asked, are you sure it isn’t autism and again I was told he did not exhibit any signs of autism. He was a boy and some boys develop slower in communication than girls and she was concerned. Again, we trusted our pediatrician.
We watched videos of the ABC song, we tried to show him pictures of animals and mouth the words to him when speaking, hoping anything would break through in his mind. The main concern at that point was how will he communicate what he is feeling, needing, wanting if he can’t talk to tell us.
We were very lucky that due to his mother being a single parent, she had signed up for Early Intervention Services when he had been born, in the event he would need them down the road. In the State of Ohio, Early Intervention services are from birth to three years old.
We had Help Me Grow Brighter Futures make home visits from 1 yr to 3 years old. This program focused not only on the child but also helping our daughter be the best parent she could be. They were able to get more services for Tyson and our daughter than we would have on our own. An ISFP (individualized services family plan) was initiated with goals and timelines to meet those goals for both our daughter and Tyson. If goals had not been met by the deadlines, we took a look at the goals, revised what needed and kept going.
HMGBF also helped us get connected with another early intervention provider, PACE (Parent and Child Enrichment Program) through our County Developmental Disabilities Offices. After evaluations with PACE, he started working with a speech therapist in the home, as well as a developmental specialist to find out exactly what he could do on his own and what he needed help with. These specialists were able to form a bond with him, as well as teaching all of us how to work with him at home, for continuity of care. They also helped us have him evaluated for Sensory Processing Disorder by an Occupational Therapist and it has been confirmed he is a Sensory Seeker and Avoider, depending on what we are talking about.
We must be ever vigilant and he can never be left alone. As with any three-year-old, he is very inquisitive and examines almost everything he can get his little fingers on, but he also throws objects as a way to get input his brain is not getting on its own. If you wish to read more about Sensory Processing Disorder, please click the link. He is considered an elopement risk or flight risk child. He doesn’t perceive dangerous situations as dangerous. He doesn’t understand that the street is not a place to play or if something is hot, he cannot touch it. And the most important thing is we can say, “No, stop” and he doesn’t have what his brain needs to process this information at the moment.
Autism Spectrum Disorder is a neurological condition and everyone on the Spectrum has their own challenges. The saying for people diagnosis with ASD is, “If you have met one person with autism, you have met one person with autism.” No two people on the spectrum are alike. What one treatment or therapy works for one person, may not work at all for the other.
From experience, living with and witnessing Tyson daily, Early Intervention Services are very important because a child’s brain is most impressionable and develops by age 3 if services are not started til later, they will progress, but it may be slower.
I am not a medical professional in any way, just a grandmother that has become an advocate for this beautiful little boy who wants so much to communicate with the world around him. If you would like to follow Tyson on his journey, please visit Missing Pieces-Living with Autism.
He has made progress since his diagnosis, so much so, that he will be starting Special Education Preschool services this fall in an integrated classroom. I can’t wait to see how he soars!
For more information on Autism Spectrum Disorder, please visit Autism Speaks.
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