My Child First, a Label Second - This Mom's Path to Accepting Autism
Apr 08 '04 (Updated Apr 24 '04)
The Bottom Line You are not alone. Remember that you and your child come first and the label second.
I sit here writing a few sentences and then deleting it, only to start over again. Its as if I can't find the right words or the right approach here. And maybe even a part of me would prefer silence and not sharing my story. Because, I am vulnerable, and like a great friend of mine told me "when you talk about something, it can become more real". For me, it is like that with writing. Opening up and putting my thoughts, feelings, and experience into words validates it. But, at the same time, I have also found that writing about my feelings helps me and in turn it may help others to know that they are not alone. So, I share this with you.
I didn't know that anything was wrong
When my son turned 2 years old, I didn't realize that anything was 'wrong' with him. He didn't speak, but was otherwise a very happy, healthy, active, beautiful little boy. There is a history of late talkers in my family with boys and my husband, himself, was also a late talker. So, I really didn't think anything of it. My son also had a history of many ear infections and asthma so we attributed his silence to that and figured it would happen eventually. A few months later there was still no change and after speaking with my mother, who is a psychologist, I proceeded to have him evaluated through the local Early Intervention program. He qualified for both speech and special education services due to his speech delay and began receiving services several times a week in our home and at a local center. He began making progress, but it was slow.
The Diagnosis
At that time we also requested he also get a Developmental Physical to see if there was 'anything else' going on aside from his speech delay. In my heart I knew there very well may be something bigger going on but it was my biggest nightmare. My husband actually went with me to this appointment (the only time), and my son was evaluated. The report from this developmental physical told me that my son was just fine, they did not believe him to be autistic and that he was just speech delayed. I was relieved by this news and I believed it, because I wanted to though I just knew there was something more.
As a follow up to the developmental, we were directed to go see another Doctor who specializes in speech disorders to see if there was more to the delay. Was it apraxia? Was it an Auditory Processing Disorder? Was it a non verbal learning disorder? or, something else? This was one of those doctor visits from hell. To begin, my son did not connect at all with the doctor and was terrified. He clung to me like never before and tantrumed. She then proceeded to talk to me like my child was a monster, or at least that is how I perceived it. "He needs compliance training", she said - as if he was some sort of an animal. She spoke frequently of the "A" word (Autism) and said he was moderately to severely Autistic. She made me feel as if I was a horrible parent. I left there in tears and wouldn't accept her words trying to block them out and just go with the first report.
When I received a copy of her report in the mail I called my service coordinator and set up an IFP meeting, since we were now approaching my son's 3rd birthday and he would have to transition from the Early Intervention program over to the school district. At the mutual decision of my son's speech and special education teachers, myself, and the service coordinator - it was agreed that we would have him see another Developmental Psychologist for another opinion.
I went to this appointment alone, with the service coordinator and met with the doctor. We spoke at length about my son and then he began the testing and observation which involved him playing and interacting with my little guy with various toys. At the end of the testing he left for a bit and then came back to deliver me the news. The diagnosis was confusing. It says things like: Behaviors consistent with an Autism Spectrum Disorder. Testing solidly suggestive of an Autism Spectrum Disorder, though certainly at the mild end. Hyperlexia may be developing. And it gives a diagnosis of Pervasive Developmental Disorder, NOS. It is this diagnosis, that was instrumental to getting my son the help that he needed. Coupled with my advocacy for him we now had all the armaments needed to get him the appropriate services.
When your child is diagnosed it is like you enter a whole new language of big words, acronyms and lingo - don't let that intimidate and overwhelm you.
The Transition to Preschool
In New York State, when your child turns 3 they enter into the school district and exit the county Early Intervention program. For some, this is a big nightmare. But for me, thankfully, this has so far gone pretty smoothly. The biggest change for us here is that my son now attends a preschool itinerant program for other autistic and developmental delayed children. His classroom consists of 6 children, a special ed teacher, a speech teacher, an occupational therapist and an aide. They have a music therapist who visits the class on a weekly basis. He goes to school for 3 hours every day and takes a school bus there and back. It is hard to put your 3 year old on a school bus (they do have carseats) but it is also liberating to know that I have 3 hours "for me" each day.
In addition to attending the preschool every day, he receives some home based services as well. There is just one day a week where I do not have either the SEIT (Special Ed Teacher) the SLP (Speech teacher) in our home. I often feel as if I have given up a huge chunk of my privacy with this revolving door of people coming and going in and out of my house. I sometimes wish I could have that privacy back, but this loss of privacy is just a small sacrifice on my part in order for my son to succeed. And want him to succeed, I do.
The reactions of family
As if my own acceptance of my son's Autism diagnosis was not difficult enough, there is the issue of how others will perceive it. It is the harsh reality that some will not accept or understand this diagnosis. I have friends and family who "get it" and some that do not. My mother is a psychologist, herself, and works directly with Autistic children. Her knowledge has been both comforting and terrifying to me - though ultimately she and my Dad are my biggest sense of support. Because they are local to me they see what I am going through and have close contact with their grandchild and see his progress. I have other relatives, siblings, inlaws, etc - who do not live close by. Perhaps due to the distance and the fact they do not see what we go through on a regular basis it is harder for them to accept or realize the reality of it all. Even my spouse has had a difficult time coming to grips with it all. His schedule keeps him apart from us for extended periods of time which is stressful on the family unit.
Dealing with friendships
I have lost friendships and let friendships go during this trying time of my own acceptance of my son's Autism. I found that it was very easy for me to go into a hole and just go through the day to day motions instead of dealing with others. This isn't the healthy way to deal with it and I make efforts to not seclude myself. The bottom line is that, for me, I needed to identify which friendships can maintain this and which ones stress the heck out of me. You need to be open and honest with friends about your stress, your feelings, and present them with facts on your child's diagnosis. They may never understand what you are going through because they've not walked in your shoes. But, they can hold your hand and be by your side while you climb this mountain. But, keep in mind, you cannot let the diagnosis consume you and your friendships. If all you do is complain, talk about the negative parts, constantly talk Autism then that's not good either. I have no idea how you find a balance but its important to just try to remember that its not all about you, and friendships take two.
At the same time, I have built friendships by reaching out to other parents of Autistic children. It is amazing that even here on the Epinions.com site there are more than a handful of us who are willing to share a voice and support each other as needed. The internet is a wealth of information and support networks at your disposal. I am so thankful for those parents who extended their hand to me, even if it was virtually. Just knowing that I do not have to go through this alone is more than comforting.
This is MY child
As a parent, my biggest want is for my child to be happy, healthy, and succeed. Through lots of trial and error, many tears, and lots of laughs, my son and I are climbing this mountain, called Autism, together. I would be a liar if I told you that I wouldn't have it any other way. Of course, I would never wish this diagnosis on my child, or on anyone. But, we've got it and we have to deal with it to the best that we can. The Autism diagnosis is a label, and a weighty one at that. But, above everything, he is my little boy. Though he wears this label "Autism" on an ID tag around his wrist, my love for him has not changed. I loved him before the diagnosis and this will never change. I brought him into this world and I do my best each day to ensure for his health, happiness and well being. He in turn is constantly teaching me new things. I have a newfound appreciation for little things now that previously I would have taken so much for granted. He makes me a better person and he completes me. I recently saw a button that said "My child is my life, and the rest is just the details". That pretty much sums it up.
This editorial is part of an effort to increase Autism awareness. April is Autism Awareness month. This is an open invitation to all who are affected by Autism in any way, to join in on writing for awareness. Simply put some sort of sentence at the end of the review that the review is for Autism Awareness Month
The rate of Autism was 1 in 10,000 births just 10 years ago. Today, 1 in every 250 children born this year will have some form of Autism. This makes Autism the 3rd most common developmental disorder - more common than downs syndrome or cystic fibrosis. There is no cure for Autism.
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marytara
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