Vaccination News Home Page subscribe Vaccination NewsLetter
http://www.geocities.com/sparcofucp/sparcsupdenial.htm
SPECIAL PARENT ASSISTANCE AND RESOURCE CENTER
SPARC is a program of
UCP of Hudson CountySERVING SPECIAL NEEDS FAMILIES OF NEW JERSEY
EMAIL:
SPARCOFUCP@YAHOO.COM
|
Special Parent Assistance and Resource Center - SUPPORT Page |
|
Denial - And Coming To Terms With My ASD (Autistic Spectrum Disorder) Child |
|
by Michelle Evans |
| I had a beautiful son - R who was my
first-born. He was everything I always wanted in a first born - he had a
wonderful disposition, slept and ate well and by the time he was 11 months
old, my husband and I decided we wanted 10 more just like him! J We got pregnant pretty fast with B - he was a difficult pregnancy and I was on bed rest for the last three months of my pregnancy due to lack of amniotic fluid. B was another sweetheart newborn - a little colicky but after about 3 weeks and changing his formula 5 times - he turned into a smiling happy child. R was 19 months old when B was born. He did everything quickly and was speaking in 3 word sentences by that time. Months went by and life was nice. Busy - but I just loved being a mom to two beautiful boys. We figured that B was a late talker (although he did say mama before DADA at 6 months). Looking back now - I realize there were problems that I didn't see but at the time I just thought R was doing all the talking for both of them. AT 15 months I started getting concerned - but kept it to myself. Apparently my husband, Rob was a bit worried too and kept it to himself. My mother ticked us both off by telling Rob when I was sleeping that she thought B was Autistic. He was appalled and said to my mom - "But look at all the things he can do" My mom - never to mince words lol - said to him "Come on - you have an older son - look at all the things that he can't do that R did before 18 months". I guess that hit home with Rob because he decided to take B with out my knowledge to his old pediatrician who had been in care of his brother (who has Downs syndrome) for 35 years. My mom - always the meddler lol - woke me up early to inform me that he was not going to tell me and just take him alone to see what he had to say. She insisted I go with him. Thank God I listened to her and that she meddled because if Rob had to come home and had to tell me that my son was evaluated by a doctor with out my knowledge and that he had a developmental disability called AUTISM - neither of us would have survived! Of course, I hated the doctor on sight, was ticked off at my mother and didn't believe any of it. He was just a late bloomer. I took him to three other pediatricians who wouldn't give me a straight answer "Nah he'll be fine! Well he could have PDD". (WHAT THE HELL WAS THAT???) I wondered "Oh, well what ever it is - it's better than autism." Rob knew way more about developmental disabilities - he "got" it when the doctor said it (the first one) because his brother had a developmental disability (Downs Syndrome). I, on the other hand, was happy to have him called anything but the dreaded "A" word and figured I could "FIX HIM, PDD, communication delayed, "had some issues", speech delayed etc. was better than autism. Of course I will never forget the ride home from the doctor's office. Rob was driving - and we were both crying. My brother in law took the other two kids home so we could be alone. I still didn't believe it - but I got right to work on finding out more on AUTISM and what to do for him. I was in complete shock over it. I LOATHED THE DOCTOR and my mother at the time. They were two instrumental people in my lives that made us face reality - and got B the help he needed EARLY on. Ages 2-5 were the "bad years" although we got him into early intervention and a full time preschool handicap program that I had done my fieldwork in a few years back. (I had quit the decision to become a special ed teacher because it was way to sad to work with those poor children that would never make it to a "normal" life.) Three years after I did my fieldwork there - B was enrolled in the exact same class that I had taught in - Ironic huh? Still - he had his good moments and we had some good times that occasionally overshadowed the dark periods. B was extremely aggressive - and screamed constantly. I didn't know about Risperdal at the time but man we could have used it. We always knew B was smart - before he talked - he was writing long names like octopus and his name and other big words in chalk (his handwriting was neater at 3 then it is now). Then he started figuring out the numbers that corresponded to the letters. A = 1 B= 2 and so on and started writing out names and words in numbers. We were AMAZED; he couldn't be autistic - he was a genius J! Then my mom got sick and we moved out of the area (school had no hope for him in our old town) and we moved to North Jersey to take care of my mom who had a stroke and aneurysm and who was getting better but needed care for the rest of her life. At 4 I tried to place him in a "regular" nursery school still not believing that he had autism. That lasted a few weeks - even though I had told the teachers that he needed to be engaged at all times or he would wander off - they managed to complain about him with in the first week or so. So I pulled him out after a few weeks. Then we went to the new school system and registered him as preschool handicapped. I was not happy but I knew he needed help. They helped him right away - getting him into the right school with ABA (applied behavioral analysis) and socialization and eventually he made it to public school by the time he was 6. I remember the child study team telling me he was classified as communication impaired and me asking them point blank "DOES THIS MEAN HIS SENTENCE OF AUTISM IS OVER????" They looked strangely at me and said that was a school term not a medical diagnosis. I still was in denial. My mom never came out of the hospital - she died February 19th at age 59 and I was crushed! If there were one thing I could do it would be to thank her for being so blunt with us right from the beginning. At the time, I was so angry with her - I never did get to thank her. B was still aggressive although the behavioral therapist saved me from jumping off my roof many a day and so did therapy. When my third son D was born - I watched him like a hawk - it was not going to happen again - after all I tested negative for Fragile X (I was so naive back then) He talked on time - then regressed. I was on it immediately - the doctor said not to worry about it - he could be a late talker. (HE SAID THIS KNOWING MY B WAS AUTISTIC!!!) But I swung into action! We spent so much money on him with speech and a full time private special education school (they had cut funding for important things like that) and we started the whole process over again. At the first meeting - I said "Well - My other son was thought to be autistic but he isn't really... Still in denial. Got some more strange looks but after I said it it started to sink in my head. Not completely though. I found the BBB Autism board and started reading the posts - they were way too similar to my story. B was Autistic - it slapped me in the face like the first time I had heard it. I credit finally coming to terms with it when I joined the BBB Autism board. All the members were so helpful and I couldn't believe that so many were going through the same or similar situations as me. Still, knowing more than I did 5 yrs earlier - now I wanted a diagnosis of Aspergers instead of autism or high-functioning autism - I still couldn't stand that name. So I asked my pediatric neurologist who specializes in autism and he bluntly told me I can call it what ever I want the same thing - B is on the Autism Spectrum and anyway I slice it (or call it) it will not change who he is. He explained to me that it is a broad spectrum but it really hit home this time. So, I credit my finally being out of denial after 6 + years to the following people and groups - My wonderful husband who never gave up on me even when I was so down and out through all the bull --- we went through - I just wanted to die, and I blew up like a balloon and cried constantly - he has always been my biggest support system- and we have always been a team. And all the teachers who helped get B to where he is now and the BBB Autism Support Network who made me see that others were going through the same things and got me actively involved, my pediatric neurologist and the doctor I loathed and my mother - who would be so amazed at the changes in B today. I know she is looking down on us and keeping us safe and she is very proud - I wish she could be here for him now. And all my friends I have met through the various boards - tons that I have met - and tons more that I plan on one day meeting lol. I value all your friendships so very much - It means the world to me to have you as my friends and confidants. Long story short - kids are doing well (still need work - we are all a work in progress) but things have gotten better and life in general is good. © Michelle Evans 2002 |
| More articles! |
| Denial - And Coming To Terms With My ASD (Autistic Spectrum Disorder) Child |
| Caring For The Caregiver |
| My Mother's Day Present |
| Welcome To The Zoo! How Raising A Child With ASD Has Changed My Life |
| A Father's Perspective by Robert Evans |
| CONTACT US: |
| To contact SPARC: Email Michelle Evans and Debbie Brown at: sparcofbc@yahoo.com |
WELCOME | SERVICES | PROJECTS | EVENTS | NEWS | SUPPORT INFORMATION & ARTICLES
SPECIAL EDUCATION ADVOCACY INFORMATION | LINKS FOR NJ RESOURCES
|
|
|
ALL INFORMATION, DATA, AND
MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
