Friday, May 9, 2008

Autism: My beautiful son Samuel

Sam was diagnosed with Autism on 9/06/07. Below is a part of the list of concerns that Seth and I went to the developmental pediatrician about on that day. (IT was much bigger) What is not mentioned in the list is that Samuel scored in the 1% for receptive language and <1%expressive. Meaning 99% of 3 year olds could speak and understand language better than Sam. He was VERY behind using a few one word utterances and a few scripted sentences.

Concerns for Samuel: 9/06/07

-Limited imaginative play

-Can’t do imaginary play with peers. Only parallel play.

-Has no concept of what a friend is even though we have multiple play dates with the same children who are his peers

-Does not respond to his name

-Lines anything and everything up, water bottles, cars, pillows, books, blocks, kitchen utensils. You name it he lines it. Prefers lining over play.

-Eye contact: Sometimes appropriate other times it is not. .

-When he gets scared or upset ends up in what we call a catatonic state where he does not move and won't look at what is going on.

-Looks to the side and hangs his head when he is walking sometimes.

-Can't explain social events to him. He may or may not want to go to Grandpas, Aunt Katie’s, but that is the extent of his knowledge of going somewhere.

-Does not know about things that a typical almost 3 year old should:
Playing Sports
Did not “get” fishing when we went on vacation
Going to Chuck E Cheese

These are all things that we have done and do, but unless we do them on a daily basis he does not have recall or express interest in them.

-Can't sustain or hold a conversation with anyone.

-Does not know his name, age, no knowledge about himself

-Echoing phrases (echolalia)and most of the speech he has is one or two words and if it is a sentence it is usually scripted.

-Generalizes a lot of his concepts and speech. E.g.: Kyleigh can't have a toy so she must not be able to have all toys. Milk, drink, water, juice, soda, are all water. granola bar, nutrigrain bar, cracker, cookie are all cookies

-Vocal stimming-says digga digga digga digga over and over again all the time all day long. Some days are better than others. A new one is la la la la la la la la.

-finger stimming- Especially in the car, but does this with a lot of objects. Will flick fingers on things as he walks by.

-Flaps hands-especially in the car

-Toe walks sometimes

-His newest obsession is spinning in circles or running in circles. Does this until he is dizzy.

-Loves to crash into me and other people. Press his head into things for the sensory input I am assuming.

-drags his head up and down the carpet.

-Does not like to have his hands dirty and flips out until you clean them. Does not like to have his shirt even a little wet and wants to immediately change it.

Sometimes if we do something even one time he gets upset because he wants to follow that same pattern.

Difficulty with transitioning sometimes, which results in tantrums. These tantrums can lead to aggressive behavior. Hitting, kicking, and biting.

FAST forward to NOW. Sam is in an ABA preschool where he has received intensive one-on-one therapy. He receives 2 hours a week of speech therapy and graduated from OT because he is caught up in fine and gross motor skills and his sensory issues are virtually gone. We also put him on a special diet eliminating all processed foods, artificial ingredients and dyes. He takes fish oil and a dietary supplement now too. He has made huge gains since I wrote that list.

ABA helped bridge Sam from his own world and into ours. It helped him learn how to talk, to play and to see things beyond what was right in front of him. We are lucky though. A LOT of people don't get services like ABA because the therapy is expensive. There are other therapies out there that work well that people still can't get either. Such as Floor time and RDI. It is crucial to get the therapies as early as possible, yet most people can't and when they do its a fight. That is why funding for autism research and the therapies is so important. If it were not for Sam's therapy we may still be wondering if our little boy would enjoy the anticipation of a birthday or get excited about going on a fishing trip with his grandpa.
Sam still has a way to go socially and communication wise, but with continued intensive therapy we have hope that he will be able to go to school without any supports and will lead a productive and happy life.

Here is a video of Sam answering questions that he learned using the ABA therapy. He is doing one of his rituals which is lining things up before bed. This is the only time of the day he usually lines now. The other parts of the day are filled with productive imaginary play he learned through ABA as well.

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