Since birth we have seen numerous signs of delay in our daughter. Now a 31-month old happy little girl the delays still continue. She does not speak more than 20 words freely, and has trouble socializing with the other children, including her sister, and puts everything in her mouth.
Here is the story of our struggles that have led to her (almost) diagnosis of Aspergers.
The Symptom Struggle:
You watch your child day in and day out from the moment they are born. You notice that they aren't walking like the kids their age but you think "Some kids are just a little slow." You realize they aren't talking or playing with the other kids but it's brushed off to the repetative line: "She's just a little shy." When do you start to think otherwise? When should doctors be called in for a check up? Well the answer is simply - Whenever you as the parent want.I began searching Google for Autism & Aspergers symptoms once I came to the realization that my daughter IS different from kids her age. They are advancing but she is staying the same. But there is soooo many sites to chose from it becomes overwhelming. I started to second guess myself and wondering "am I really seeing these things or is it just because I did so much research?" It's difficult because you reach out onto websites, to people; family and friends in hopes that someone will just tell you what is wrong but there isn't.
So when I finally decided to reach out to the doctor I was faced with a survery of 200+ questions to help the doctor better understand Michelle and a 6-8 month wait list. There was so many similarities between questions I felt like I was repeating the same thing over and over again. As the days went on I watched Michelle's every move and began to second guess my findings.
The Daycare Struggle:
Michelle started daycare at a very reputable location. I thought for sure they of all people would be trained in early signs of Autism and how to approach the child. The staff there underwent intense training, schooling, and co-op placements before ever becoming trustworthy of having our children alone. So why are they so blind to see the signs?
Michelle was placed in the "Toddler 2 Group" with children ranging from 18 months to 2 years because they felt she could relate to them better since she doesn't talk. I agreed thinking it would be best for Michelle's self-esteem. The workers in charge of Toddler 2 were enthusiastic, nice, and knew exactly how to get the children excited to be there and the centre was strict on routine, cleanliness, and support....or so I thought!
As the weeks went on I voiced my concerns on Michelle's development and each time I was given the "She's just shy" excuse. it was clear they weren't very educated in Autism. Michelle spent her days there in silence, sitting on a bike by herself and never participated in the group activites. Although she was noteably stressed in the busy environment they felt she was adjusting well.
The doctor suggested they complete a DISC test on Michelle to see if she actually needed help. A DISC test for those of you don't know, is a very VERY small checklist of things she should be doing by age (Ex- jump on one foot, draw a line, match items, and speak words for a 30 month old). The results were Michelle passed! But don't get too excited, I later found out Michelle didn't do anything correctly but the daycare felt it was a good effort and scored her perfect anyways. This is the exact reason why it took us an additional 4 months to receive the speech therapist & an occupational therapist.
Now, back to the survey the daycare received. That was filled out with such disregard for the obvious and Michelle's needs that I almost feel sick discussing it. They noted on the survey, which I have in front of me, that "Michelle mimics often (but all the other children do), Michelle is seen everyday talking back and forth, playing with, associating with the other children., and my favourite: Michelle is just shy." Of course Michelle is just like the other children! The other children are half her age!
I was then faced with a realization; Why is Michelle still at that facility? She doesn't like it there, everything we have accomplished at home goes out the window when she walks in their door, and they are in denial she may be Autistic. It was that moment I removed her completely from the daycare centre. Yes, the pull from routine caused a lot of struggle with Michelle, and a lot of meltdowns occured in both mornings and afternoons at our usual drop off/pick up times but these sacrifices were for the greater good. I need Michelle in a place where I feel she will get the special attention she needs. Somewhere I know she will be noticed and helped. If I can't even depend on the daycare for a proper test score then how am I going to possibly trust them when she's actually diagnosed?
The Doctor Struggle:
Currently we are nearing the end of the whole proccess. We've met with an occupational therapist, speech therapist, a child psychologist, done four questionnaires, a proper DISC test, Nippising tests, two hearing tests and finally, an eye test. The conclusion from all of this is that Michelle has either a form of High-Functioning Autism, or Aspergers Syndrome. She fits Aspergers very well but with her very slowly progressing speech they are confused. To their knowledge children with Aspergers don't have speech delays; Children with Autism do. So, they cannot say with complete certainty which one it is until the specialist actually sees.
Personally I don't really understand why there is even a specialist involved. She doesn't do any of the work. She doesn't conduct any of the tests, the visits, or the surveys. Heck it's been 8 months and she hasn't even met Michelle once. Even when she does, a diagnosisis produced within 45 minutes of seeing her. You can't possibly know my child in 45 minutes! But, I guess she's a blessing in times of confusion like this. It's getting to see her that's the struggle.The Conclusion:
Even though Michelle hasn't offically been diagnosed by "the specialist" we know it is either Autism or Aspergers and that is a comforting start. I am now able to do activities and plans that benefit her needs appropriately.The amount of training that the people in charge of providing education to our children is minimal which makes it that much more difficult to get help when you need it. You can easily become very flustered by the amount of questions that are asked and people you meet along the way. You must have a good support system in line for this journey. For me, it's my husband. He is my rock when it comes to all the appointments and stuff. I wouldn't have been able to stay strong without him.
Finally, The two most important pieces of advice are: Have patience, and always take notes. After the daycare failed to see important flags in Michelle and fake test scores I decided to start a journal. It specifies the times, dates, and details of Michelle's delays and problems at home. I wrote down everything she said and did for days in that book and for the first week I regretted it because it felt like all I was doing was writing but in the end it is worth it. The journal & videotapes helped to show everyone I wasn't crazy- that Michelle really does need help.
**Whatever you do, do NOT give up! You are not alone!**
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