Today’s blogger interview is with a Mom whose site, The Quirk Factor, I visit daily. Even though her son’s disability is very different than the disabilities of my children, her struggles to ensure his rights and well-being are the same as mine – and most likely the same as yours.
Tell me a little about yourself and your family.
My name is Melissa. I live in Michigan with my boyfriend of 5 years and my two beautiful boys. My parents and my sister are nearby, which is wonderful. I have a Bachelors degree in Sign Language Studies, and I currently work for a company specializing in rehabilitation for Traumatic Brain Injuries.
My oldest son, Jaysen, is six years old and recently lost both of his front teeth, which makes for interesting conversation. My youngest son, Rylan, is a year and a half with flaming red hair and the attitude to match it. The boys love being brothers, as long as Rylan isn’t crying- then we have issues. We also have a Ragdoll cat named Tiki.
Tell me more about Jaysen’s disability. When did you first learn of his disability – was it at birth or later?
At about age 2, I began to notice that Jaysen didn’t have the language skills that other kids his age did. Like many other parents, I brought my concern to the pediatrician, who told me not to worry because kids all develop language at their own pace- but I should stop trying to teach him Sign Language, just in case it was hindering his verbal language. Okay- I bought that for the time being, but it was still in the back of my mind.
When Jaysen started daycare at 2 and a half, I remember telling the staff that he has a pretty significant separation anxiety, has trouble with transition, and not to worry about his video tape- he just likes to carry it around.
About 6 months later, the staff approached me that although he was very smart, Jaysen didn’t like to do things with the rest of the group, and did not like to follow direction. They too were concerned with his language development. I took him to see the district speech therapist, who diagnosed him with Hyperlexia. He did not begin therapy because she too, felt that he was still too young for concern. I researched Hyperlexia, and it fit like a glove.
As time went on, the daycare became more concerned. He did not eat like the rest of the kids, and was starting to exhibit meltdowns, and had I had him evaluated for Autism? I was extremely offended that they would even suggest that my son was Autistic. I’ve worked with Autistic kids for 6 years, and although they were awesome, it wasn’t what was going on with my son. I knew something was going on with him, but it wasn’t Autism. I took him to a pediatric neurologist. She talked to me for 15 minutes. Aspergers.
I started my research on Asperger Syndrome. It didn’t fit. How could my son have Asperger’s when one of the distinguishing characteristics was being excessively loquacious? My son wasn’t speaking more than one word requests.
I took him for another eval at another speech therapist. Expressive and Receptive Language Disorder. More research. This seemed to fit better. He started therapy and the echolalia gradually began to fade. Real words were emerging.
Time went on with this therapist. It got to a point where Jaysen’s behaviors were impeding her progress with him. He began working with her OT partner for sensory integration. They said he was quirky, and may be a touch on the spectrum, but it could also be that he would always just be quirky. They suggested I take him to a psychologist that they knew, who specializes in behaviors, just to see if it was quirkiness, or something else.
I went to the school first. The school psychologist diagnosed him as moderately mentally retarded, while another diagnosed him with Early Childhood Developmental Delay. I quickly made the appointment with the recommended psychologist.
My initial meeting with this psychologist (who is also wonderful), was about Jaysen’s history, development, and an all around feel for the type of kid he is. I expressed my frustration with people and the Autism thing. I never bucked these diagnoses because I didn’t believe my son had issues, I just wanted to make sure he had an accurate diagnosis.
I asked him, “why can’t he just be a Hyperlexic kid, has a language disorder, some OCD’s, and sensory issues?” He said “He can. When those things come together, it’s referred to as an Autism Spectrum Disorder.”
The Tourette Syndrome diagnosis came later. It was one of those things where I was surprised, but not really. I was concerned Jaysen acquired Tardive Dyskinesia from a change in his meds, so we went to a recommended neurologist who specialized in movement disorders. He diagnosed Jaysen with TS and explained it’s genetic, and I had passed it down to him. So, what I thought was OCD’s growing up, turned out to be me having TS. Who knew?!?
You blog a lot about Jaysen’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about Jaysen? What do you personally get out of blogging about him and his issues?
I began following a few blogs about Autism and realized that my son had so much in common with a lot of these kids. I really found the blogs encouraging, and I wanted to share my experiences as well.
It’s always been my belief that the more a person is exposed to something (except spiders), the more opportunity there is for them to become educated on it and not be afraid or make assumptions. By blogging about our experiences, I’m hoping to reach out to newly diagnosed parents, to show them that having a child with a disability is not only not the end of the world, but you can also enjoy the ride. I’m hoping to reach veteran parents, to share stories and ideas. My secondary reasons for blogging are to keep a journal of sorts, and to document the all important paper-trail.
How has Jaysen’s disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
I’ve always been attracted to advocacy. Even as a young kid, I rooted for the underdog. I have worked with a variety of disabilities since the age of 14. Being around and spending time with people having multiple disabilities, opens your eyes to each person’s uniqueness, and how people of all varieties help contribute to the diversity of one society.
When Jaysen was diagnosed, I don’t think the “grieving phase” hit me like it does other parents. I didn’t view disabilities as something to mourn, simply another aspect of life. Some people have blond hair, some people have brown, some people have disabilities, some people don’t.
Although I was prepared to raise a Deaf child, I knew little about Autism as a spectrum disorder. So I hit the books. I asked questions. I armed myself with as much knowledge as I could get, from all angles. Then I threw most of it away.
I quickly learned that no book, teacher, professional, or anyone else, was going to teach me better than Jaysen himself.
What did I do right? I guess it would be that I haven’t lost sight that first and foremost, my kid is just that. A kid. He’s going to do goofy things and get into trouble regardless of his Autism. As far as what I would have done differently- that’s tough to say because I’m always looking for ways to grow. I probably would have introduced “structure” much earlier.
What do you want other parents fighting the same fight to know?
There are some wonderful support systems out there, including the internet. I have learned so much by blogging and following other people’s blogs. There will be times when you feel alone, but then you realize there are people in the very same situation that you are, and it’s comforting to know there are resources available, and new ideas to try. Remember, teach your child, but don’t forget to learn from them as well.
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.