Over the years, I've always had concerns and struggled with Calliope's behaviors. I felt I was a good parent, even had strangers stop me on the street and in stores to compliment me, and I just kept doing what the books, magazines, and other parents suggested and expected things to get better.
After being dismissed by teachers, doctors, counselors, a principal, a school psychologist, other mothers, and relatives, I still knew something wasn't right and kept looking for help. They all made excuses for her; she's so young still, she has a single parent, she just moved, she misses you when you're at work, she's competing for your attention now that you're dating, she has a step dad to adjust to, she has a new baby brother, her hormones are starting early, and on and on with excuses for her behavior. I was aggressively denied membership to a special needs support group I sought help from. I requested from the school over and over, finally IN WRITING that my daughter's needs be assessed and was ignored. There was no one left to call, no one left to talk to, no one left to seek help from.
The counselor my husband and I were seeing to help us with the issues of raising this blended family with a high needs child didn't think it was anything like ODD or ASD. But, after he met with her twice, he reconsidered. He suggested a psychologist that specializes in autism, and we made our fist call to Julie Daggett.
After testing, Calliope was diagnosed with Asperger's Syndrome. That diagnosis on top of major depression and gifted intelligence diagnosed earlier. So, we had a name for our problem, and it felt awful. I knew that with a real diagnosis the school couldn't ignore us anymore. I thought that with a real diagnosis the places that couldn't help before would have things to offer. So far, the first year of middle school is a mixed bag, and the community support is zero.
I feel as if I've been shouting from the rooftops for two years now, "I'm doing all I can do and need HELP!" No one can hear me.
My main goal is and was respite care, just to get a break and have fun alone, with hubby, or with just the little kids, but there is no way to get that break.
hi Christa. My name is jessica. I know your sister Sarah. I have a 11 year old aspie too. I so know the pain you are going through right now. If you want, go to my blog and do a search on NOAH.
ReplyDeleteyou will see some of the journey we went through in the early days with him - up until we got our diagnosis.
If you want to talk, let me know.
I've been thinking about you a lot. I have a couple friends with Autistic kids, one with Aspie and I put in 3 years trying to raise my 22 year younger sister who has RAD (reactive attachment disorder) along with a host of other things.
ReplyDeleteYou are not alone in your struggles. Let me just say that. I live in a wealthy community with what would seem to be unlimited resources and my friends have to fight, fight, fight for every single step and service. One is fighting just to keep the IEP as her Aspie kid has as he is entering middle school, they want to drop him all together.
I have another friend who has 5 kids and her 2 youngest are ADHD with some major learning disabilities. She is a preschool teacher & knew something was wrong but the district told her to take a parenting class. Now, the boys have been held back a year, they are behind in everything. Going into 2nd grade the district offered special ed for them. WTF? From nothing is wrong to Special Ed?
They are all fighting, fighting, fighting. Some have lawyers, some do not have the strength to take it that far. You do what you can do and DO NOT beat yourself up over it.
Your comment today on Twitter broke my heart. My husband & I struggled with the whole wondering if my sister was feeling loved thing. This is yet another area I see my friends struggling with. We were faced with a young child who not only didn't express love in ANY way, no snuggles, no words, not even looks of love but she also told us how much she hated us & on & on. It broke us. That alone took us down to our knees. We almost lost each other trying to deal with that. But we were parenting someone else's child.
My friend's with Autistic & Aspie kids just cleave onto any hint of affection. I remember the call I got the first time my friend's then 7 year old daughter asked for her mother. We both cried & all she did was ask "Where Momma?" That was the total extent of her offered affection up to that point.
I don't have an answer except that from my own experience all we can do is offer our love. Keep sending it out. I believe they feel it. Through the aggression, the yelling, the awful words they sling. There would be a void if your love were suddenly taken away. That's all you can hang on to as you struggle to help your family and your daughter figure all this out.
You are amazing because you care, for never stopping, for demanding answers. You care and that's all that matters. Your love is the engine behind all that matters. Focus on that and let it keep you going.
I'll be thinking about you guys and hoping more answers and resources come your way.
Hi Christa :) I'm also Sarah's friend. While I can't seem to find my words at the moment,I wanted you to know that you are not alone. My oldest son, who is 5, is very similar to your daughter. We're still begging for help too. :0/ Waiting to get a *real* diagnosis. Please know that, while we don't know each other, you and your family are in my thoughts. Best wishes.
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