I thought I would start my first post by describing each one of our children so you all can become familiar with them.
My Oldest son
When he was a year old, we started noticing that his speech wasn’t developing like the rest of average children, we also noticed that he was unusually hyperactive and it was extremely hard to keep him under control. A few doctors thought he had ADHD but I knew inside me that there was much more going on inside his mind than just ADHD but I wasn’t sure what it was. He started a pre-school near our home for a while and we started realizing how far behind he was from everybody else.
We decided to take him to Mt. Hope Hospital’s child guidance clinic for a complete evaluation. Anyone who is familiar with Mt. Hope knows they still are in the pre-historic days. When in the US, they diagnose children as young as 18 months in order for them to access the therapy they need right away, Mt Hope dislikes to test/diagnose children under the age of five. Imagine how much a child loses during those first five years of life. He was diagnosed with PDD-NOS (Pervaside Development Disorder, Not-Otherwise Specified although at this point he displays all the characteristics of Aspergers. Basically, he was diagnosed with autism and the type of autism that did not fit in any specific category.
I knew he wasn’t ready to start primary school and I knew that based on experience in the educational system in Trinidad, no teacher would be willing to take his/her time with him and be able to help him so I decided to homeschool him. He was on Ritalin and Concerta for one year. After a lot of work, at the age of seven, he was reading his first book. A child who two years prior, couldn’t say a proper sentence was now reading.
He is now 14 years old, fully verbal and very high functioning. His challenges are mainly about social interactions, OCD, ODD and learning social cues and it is something we are working together every day. It is not easy for him, especially at this age. He is really good with computers and drawing, he is learning coding and flash and loves to play computer games and read about history and astronomy.
My middle son:
When he was a baby, he was extremely quiet. He seemed to have developed normally until the age of one. We did not expect him to also be autistic. We decided to have our third when he turned one since he seemed to be doing very well but when time passed, he started developing behavior that started to concern us.
His limited speech was just sounds and he disliked to talk and shouted for everything he wanted to do. We also noticed he suffered with a memory problem and he would forget things very easily. We also noticed how he would stim, flip hands and had different obsessions with sameness. He would want a specific plate to eat, a specific napkin with a certain pattern, a specific fork, etc and would shout and cry if certain shows on TV were on. He would make little to zero eye contact and he would enjoy swinging.
We knew at this point that he showed a lot of autistic tendencies, as a matter of fact, he is the one that displays the most classic autism characteristics. We tried to change his diet, we tried to use calming techniques and nothing seemed to be working. As the time passed, instead of seeing an improvement as we saw with our oldest, we saw that his behavior was getting out of control. A psychiatrist stated that he is autistic and also that he has a severe development delay.
That day, during a doctor’s visit, my son was behaving like someone coming from a psychiatric unit. He was screaming, shouting, fighting and throwing everything everywhere. We decided to try Concerta since Ritalin is banned in Trinidad. The problem is that Concerta is a time release capsule and he does not know how to swallow pills and he wouldn’t want to try or if he did, he couldn’t do it.
We invented a few things and put it on his food, and even though we saw little improvements, the side effects of lack of appetite and the “Crash” after the drugs wears out caused us to stop the drug and deal with him as he is. He is now 8 years old and his behavior hasn’t changed. He is anxious as soon as he opens his eyes in the morning all the way to the night. No amount of food, or outings, or fun things or toys, or computers or games or time with us seems to help him calm down. He lives in his own world and has meltdowns in the middle of the street, grocery store, etc if things do not go the way he thinks they should go. If others talk to him, he would ignore them.
He spends his days fighting with his two brothers and telling everyone in his own language what they should do. He also struggles with sensory issues, especially loud noises. Christmas/New Years and other holiday celebrations are a nightmare for little Jonah. He is extremely affected by fireworks and shouts and cries inconsolably. He enjoys going out and seeing new things, and recently learned the concept of time and days which helps a tiny bit with his anxiety.
He is a very loving child, loves to hug and kiss and also likes to help. He is also great with computers. He was formally diagnosed with moderate autism.
My youngest son
When my middle one turned one, we decided to try for baby #3 since we did not know he was also autistic. Of all three, our youngest seems to be the one that displays the least autistic tendencies. The number one problem we have is that he loves our middle son so much that he imitates him in everything, including all the bad things and the bad habits.
He speaks full sentences and can understand everything we tell him. His body language also indicates that he is very aware of what is happening around him. He is picking up some traits from our middle one such as getting very upset if things do not go the way he expects them to go and struggles with trying new foods. He eats mostly peanut butter and jelly sandwiches, crackers with peanut butter, pasta, tacos, chili, cereal and that’s about it. We are hoping as we offer more foods, he would try to eat other things.
His speech is not yet the same as a child of his age but is slowly improving. He is a great observer and learns this way the best. His emotional maturity is also a little behind, he is very much like a “Baby” still, this could also be due to the fact that he is the youngest. He is also quite anxious and hyper and when he walks he “Jumps” rather than walk naturally.
He also has sensory issues, same as our middle one with regards to noise (Although we observed that since he does everything his brother does, if his brother shouts he would do the same even if he is not affected) also sensory issues related to ‘smell”. He seems to be comforted when he grabs my arm and smells it and then hugs me.
He is also a great artist, he can draw very well with a computer program and has a vivid imagination and loves to spend time with mommy. He was formally diagnosed with PDD-NOS just as our oldest one.
Kelton is going to be 5 and honestly the school search has been painful. It has been a lesson in humility as I feel as though I’m begging people to take him.
I’ve been rejected by most before they have even met him. Too autistic for some, not autistic enough for others. He’s been home for months and home schooling is not an option as I have to work.
His mind is very sharp, he can read, spell and write. He loves to read. He can count but no add, he is still in diapers, although we are working on that, and he just started feeding himself. Any suggestions, even considered home schooling.
Solmer, I also went through the trials of looking for a school for my son last year. [..] I applied to 11 different schools and everyone of them rejected us, saying that my son wasn’t smart enough. The last school was the one that realized that my son showed signs of autism.
His dad, thank God is self employed so watches him during the day. Was also looking for a tutor but no luck.
One school even told me that if Kelton doesn’t learn how to behave he will have to only learn life skills, could you believe?
And the schools are $3000 and they want me to pay for an aid. So what are they getting 3000 for?
I wish his therapist would open a school he loves her.
Hi Solmer, I understand exactly what you are saying because I have been in the same road and to be honest, I gave up looking for a school. I have to write a long blog post with my experiences about finding suitable schools but I can tell you that I have tried several special needs schools to realize that in most of them, they do not have people qualified to teach special needs children.
My two youngest are home-schooled and I am in the search for a private tutor for the oldest.
Finding a suitable tutor willing to teach special needs children is also a challenge. Who takes care of your little one at home?
Hi Amoy, your son must be so big. Please do not forget to subscribe so you can get an email every time there is a new blog post. How is Kendell doing? And yes, humor makes life a little easier for everyone.