Thursday, March 3, 2011

She has Aspergers.

I've known for some time now. When I said these words to myself, I cried.  I did not cry out of sorrow for my daughter having this syndrome, or because I was now a mother to a daughter with this syndrome.... I think I cried because  all the denial, and all the heartache came together and said your most amazing daughter is really not ok.  She needs help.  Your eyes are now open, and it is time to begin helping her.  Her life is in your hands, and only you can guide her, love her, and help her grow with this, so she can someday function.  Your daughter does have severe anxiety.  Your daughter will not get out of her bubble of dragons to play with other children.  Your daughter does show signs of depression.  You daughter is growing up, but cries everyday, often multiple time per day.  Your daughter cannot ride a bike, use a knife, or even hold a fork properly, or even run with a "normal" gait.  She is quirky, extremely intelligent, but introverted. She is clumsy and still spills everything. She prefers the dark, and cannot stand loud noises (sometimes). She will eat her hair, pick her nails, shake her hands, or bite her fingers constantly to deal with life.  ...And she is outstanding.

Kelsey is 10 now, and struggles everyday, as I struggle everyday to give her a great life.  She wears me down, but fills me up with so much joy, love, laughter, intelligence, and goodness. She is growing up, and these things are changing.  The days of constant fear seem to have gone.  She does not ask if the stove is off a million times before bed, as she did for years straight.  She does not fear tornados and any strong wind that may bring tornados, even though tornados are not too common in Denver.  Ah, we can leave the house, and she is ok!  She is starting to talk about other things, but still draws dragons and writes pages and pages of dragon tales almost daily.  Her obsessions are growing into more compassionate ones, but this leads to great heartache, heartache that a 10 year old should not have to endure.

My love cannot be far from me. If she is, she is closed. She may appear out of it, in another world, depressed, but she is just dealing with being away from the nest.  She still pleads with me to let her sleep with me.  She holds on tight, and I never want to let her go, but I fear her never being able to function on her own.  I don't know our balance, I only want to hold my baby and tell her I will protect her always.  But, even when I say this, holding her near, something happens, and she is set off, and I don't know what it is.  Her sadness gets strong. She cries. She cries a lot.  Sometimes, it seems, for days.  And then life is good again.

I took Kelsey out of school last November.  It was too much.  Bringing her home to school has been a great decision.  I know this doesn't help her social skills, but it helps her life.  Life is simpler.  There is much less stress, more time to breathe.  Kelsey does well with this.  She spends the days with me and the babe, obviously schooling, but also at the dog park, taking walks, out back with baby, reading and being.  We don't do too much, as it is just too much. She has grown into an extraordinary big sister to baby sister, but nothing much has changed between her and Madison.  Ha, of course, they are 20 months apart after all!  She has grown so much by helping me daily. I am surprised and proud at her transformation at home, but always aware we have so far to go.


Kelsey Lin, my heart, I love you completely.

18 comments:

  1. you sound like me. whenever i start to get totally overwhelmed by the weight of parenting my aspie girl, i feel like i'm drowning during bad periods, but when i start to catalogue all the hard stuff, i can't help but think about the most amazing, awesome parts. and i've finally come to a place where i feel hopeful for her future and to realize that in spite of all the hard, i'd never want to change her because the sum of all the parts is phenomenal.
    i'm in the process of emailing you back right now. it's been a busy day.

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  2. This is an amazing post. Thank you for sharing; I am still trying to process it. I'm having trouble finding the words I want, so I'll just say that it was beautiful and you sound like an wonderful family. Take care.

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  3. Wow. You are an amazing mother. Thank you for sharing your story with us! Your daughter is so so so lucky to have you.

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  4. Beautiful post. She sounds like an extraordinary little girl and you sound like a wonderful mother.

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  5. There are days when I wonder if my son has aspergers. I could make you a list of things that would make it sound like he does, but then I could also make a list that makes me think that he doesn't. What I do know is that my quirky and intelligent boy is a wonder to have and I can tell that you have an amazing daughter as well. It also sounds like you are doing a wonderful job as a mom.

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  6. Such a touching post, what a lovely mother you are x

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  7. So well written and heart felt. Now that you know for sure, you can learn how to help her. Everyone is here to support you and cry with you!

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  8. Thank you for sharing your heartfelt post with us. I know you are a great mom, so don't let yourself get too discouraged. Not every day can be a great day. Sometimes, just a quiet, snuggly day is what is needed. Sounds like you and hubby are doing things right.

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  9. This was so beautiful. And so very inspiring.

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  10. oh my broken heart! I know why you cried. You cried because you remember all those times you felt like you didn't fit in in school, and when kids were mean, and all those awkward times of youth, and you never ever wanted that for your own daughter. The school years were so very hard, and it seems as though fitting in was of paramount importance.

    The anxiety. The freaking anxiety. I know it well. My Jack gets to be the only kid who leaves the class room whenever the teacher has to turn the VCR on. He draws obsessively, but such marvelous drawings--we have stacks and stacks and stacks of them.

    Your poor girl though--the crying--it's heartbreaking, because I guess we figure that if you can't at least be happy when you're a kid, when can you?

    Yeah. I hear you.

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  11. wow...just wrote a long post and it didn't work...gee it was good too!!!!lol...we have alot in common...diet coke being one of them, I have a 16 year old who has classic signs of aspergers, when he was 10 we were in dire straights, he was getting in trouble at school for being rude, he never spoke to adults and din't look them in the eye when he didn't speak!!!, amongst so many other things, all classic aspergers stuff, i researched it when i saw something on tv and thought this is it...with great relief...we had him assessed and 6 years ago it wasn't too widely known in australia, so he was diagnosed with social and school anxieties with several phobias...to this day, he is 16 now, i know that he has aspergers. We worked hard, and my younger children were wonderful, because as they learnt social behaviours he did too...he is now in year 11 in high school, he has an amazing group of quirky friends just like him, he is amazing and his whole life we have celebrated his indidvidualism, his quirkiness, he is an amazing kid,,,just as your little girl is, primary school was a nightmare, but it will get better for you all.,..I am glad you found me because i have found you!!!ps..i homeschool my nearly ten year old boy who has a life threatening condition...so much in common...take care
    mandy
    xxxx

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  12. I am so very grateful for all of your comments. Thank you all so very much!

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  13. The first step, the hardest step, you've taken....acceptance. I, too, was in denial for several years. It's extraordinarily painful watching our children struggle. I am so very proud of you for taking the steps to guide Kelsey. She's an amazing young lady who will achieve great success. I've purchased several books on Aspergers following Ricky's diagnosis. They don't help me through the day to day, but does give understanding as to why he does/says things, explains his episodes, OCD, social/communication, etc.

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  14. I am so very glad to have found your blog and to read this heartfelt and very real post. My son is 11 and has Aspergers. He is a delightful, smart handsome, loving, funny, wonder-full child and he is also at times a hand-full. I love him so much and I too worry about wether he will be able to live an independent life as an adult.
    So many times I have wanted to write about what it is like to be the parent of child living with aspergers, but was afraid people would not want to hear it. You're writing is very honest and touching and hopeful, thanks for sharing your experience.

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  15. as you can see you are not alone with having a child with ASD or aspergers. These type of children often need a quiet space as they are hyper sensitive to their surroundings. Its a daily challenge to find ways of living with aspergers or ASD so wish you luck..have you read any of Ellen Notbohm's books..she has a facebook site too.

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  16. Your daughter is so blessed to have a mother like you, thinking so well and courageously about her future as well as her present.

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  17. What a beautiful post about your beautiful little girl. It sounds as if you are both doubly blessed to have each other. You paint a loving, honest picture of life with your daughter. You are really an amazingly strong woman and both of your daughters will gain from your strength.

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  18. My son who is ten is on the autism spectrum, but not exactly aspergers. He has many social problems and has a hard time at school dealing with peers. He doesn't understand non verbal communication at all and his peers don't get him. He also struggles academically, but he is getting better with this. He also can't ride a bike or tie his shoes well and he has terrible handwriting. We have struggled to find out what his problem was and how to help him. I feel that we are just recently making progress. He is getting more help at school and through therapy, but it is still a struggle. It is frustrating to go through some days with him, but I think it is getting easier as he gets older. The summer is also easier since we don't have the daily struggle with other kids at school. I don't think that I could handle home school though. He fights me more than his teachers when he is asked to do anything that is learning related. I am hoping that the structure of middle school will be easier for him to deal with, but first we have to get through the last year of elementary. I am glad to find other people who have similar struggles to talk to.

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Hey you!!!