Stories From the Heart: My special needs ASD Child

When I got pregnant at age 39 I knew there was a greater risk of having a child with a disability. I had a background in special education so I knew that if that should happen I would be okay and that I would deal with whatever I was faced with. My late husband did not have any experience with special needs children so it was important that we discussed the possibility we faced in regards to the elevated risk in getting pregnant at my age. He also did not have any issues with the possibility and was bound and determined to face any problems head on.

On February 13th at around 12:35 PM our beautiful baby boy was born. My sister who was in the room for the delivery described him as the “Gerber baby“ and my dream to be a mother was finally realized. Braydon grew quickly and appeared to be developing at an average rate. He sat up when he was supposed to, he stood, crawled and walked when he was supposed to and babbled as most babies do until he was 18 months old. The city sends out a pamphlet to new parents with a checklist of words a child should know at a year and a half. As I went down the checklist to see what words Braydon knew I realized after the first few words that he was nowhere near average standards for speech production for a child of his age. This to me was cause for concern.

The pamphlet included a number of a company for parent’s to call if their child was not meeting the average benchmark for speech production. This company specializes in kids who appear to be speech delayed and assist the parent in giving them tips to help the child’s development. Part of this program was a playgroup for children 2 to 4 who were behind in their speech development. The idea behind the playgroup was for kids to learn how to socialize and acquire new language through play. The speech pathologist from our local children’s hospital assigned to our son who went to those playgroup sessions, noticed that he did not socialize with the other kids and had his own agenda as to what he wanted to do at the playgroup. He appeared to exhibit an attention deficit problem as well.

By the time he was 2 years and 8 months old an appointment was set up at a program that provides assistance for children with developmental and physical challenges to have him assessed by a psychologist to find out what was going on. As we had no one to sit for our son my late husband stayed home to look after him and my sister who was a Special Education Consultant for a local school board went with me to the assessment. It lasted approximately 2 hours and after the time was up we were told we would get a call for the assessment results in a few days. Keep in mind that at the time of the assessment our son was practically non-verbal. He spoke maybe a handful of words at the most and never spoke more than two or three word utterances.

My sister did not expect a cut and dried diagnosis because of Braydon’s age and his lack of speech or language at the time of the assessment and the fact that the assessment wasn’t even completed on the day of the assessment.  The diagnosis was GDD or Global developmental delay and PDD NOS with an oral motor speech disorder.  He also had some fine motor challenges. We agreed with the PDD NOS because of his lack of social awareness and the oral motor speech disorder because that was obvious but we had great issue with the GDD diagnosis.  How could she possibly give us a firm diagnosis when she didn’t even finish the assessment? And how could she possibly know what he could do when he hardly spoke a word?

My momma bear took over when she basically told us that our son would never learn past a certain point and that he would not amount to  much in life considering the” severity” of his developmental delay. We all knew that the GDD diagnosis was not accurate and I was determined to prove her wrong. She felt that because he did not know how to complete a simple puzzle he was terribly delayed. I never taught him how because his speech development was a priority for me, puzzle making was not. I went out and bought puzzles to tech him the alphabet and his shapes and simple wooden puzzles so he would learn how to complete those. He learned his alphabet and all his shapes including octagon in about a month or less. That proved to me that the so called “professional” was way off in her GDD diagnosis and that there was a lot more going on with Braydon than he was able to express.

When he entered Kindergarten at age 5,  I made sure he had an assistant to help him because he would not have survived in that large class without one. By the end of Sr. Kindergarten it was obvious that he would have to repeat kindergarten at age 6 because there was no special needs class who would accept him without a proper and up to date diagnosis. The school pushed us to have another one and in the summer when he was 6 we tried again and the diagnosis was not forthcoming because the assessment was not completed. This time we hired a private psychologist and she could see that he had more going on than he was able to express and felt it was unfair to give him an incorrect diagnosis.

After one more horrendous year in kindergarten at age 6 -7 the school who was convinced by this time that he was Autistic pushed us to have another assessment done so he would get a placement in a coveted Autism class in our school board. In March of 2009 he was diagnosed with Autism disorder. It is considered a mild form of Autism on the spectrum and he has symptoms unique to him which is why it took so long to get the Autism disorder diagnosis. We say he has his own spectrum because although he does meet some of the criteria for Autism he has other behaviours that belong only to him.

He is a joy to anyone who knows him. He does not have any aggressive behaviour, he doesn’t have angry outbursts and he aims to please when he’s not being stubborn that is. For my late husband and me the fact that we had a special needs child was not cause for dismay but a privilege to have been trusted to be the parent’s of our special boy. Yes he is different, yes he marches to the tune of his own drum but he is healthy and happy and that is all a parent hopes for in their children.

By Pamela Thompson

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

 

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