Hard to believe I could have possibly left anything out of the last gargantuan blog, but I did. I forgot to list the warning signs we didn't recognize.
1. She turned her head away/cried/screamed/yelled "Go away"/put her hand up (stop-in-the-name-of-love kind of motion)/all of the above when someone unfamiliar or unexpected addressed her or walked in the room.
2. She liked to play by herself for more than twenty minutes at a time and would tell people to go away if they tried to join her.
3. She never played with blocks, legos, or puzzles. The animal toys she did play with were played with for time periods too long to be appropriate.
4. She paced, flapped her arms, and engaged in other self-stimulatory behavior ("stimming").
If we'd known then what we know now, we could have gotten Claire help when she was three.
You're probably wondering how we managed to let things go for two years. We ask ourselves that every day. Here are the answers:
1. We thought she was just shy and that everyone should respect her personal space. She never avoided making eye contact with me, and we never had any reason to doubt she loved us.
2. Damon and Anne were so demanding, Claire was like a dream come true to be able to play by herself. And she often played very well with Damon and Anne, so it's not like she never played with anyone else.
3. She was unique. So what if she didn't like the same toys other kids liked.
4. She'd been flapping her arms since before she could walk, and I thought it was a darling expression of excitement; her pacing seemed harmless.
About the time Claire was three, I read A Child's Journey out of Autism by Leann Whiffen (a fellow Maladite). Leann's son was so much more severe than Claire that I never identified him with her. I never associated Claire's shyness with "avoiding eye contact." It never occured to me her cute arm motions could be classified as "arm flapping."
If you're still shaking your head at our stupidity, give yourself a pat on the back for being smarter than we were, and keep your mouth shut: I can't stand a know-it-all.
6 comments:
I am touched by what you said about your sweet little girl! My prayers will be with you and your family! You are a great mother don't ever think that you aren't.
Yesterday I read a blog of one of my husband's high school friends. She and most of her children fit somewhere on the autism scale. Here is a piece from her blog. Her son had just had a huge meltdown and was frustrated with himself so she finally told him that he had autism.
"He laid there thinking for awhile and then he said "Mom. I don't think I have Autism, I think I am just Porter. Will you make me a lunch now, so I can go to school?"
I felt a rush of the spirit testifying of the truth he just spoke. "Your right Porter. You are just Porter. A great kid. Yes, I will make you lunch. Lets go."
He helped the spirit teach me a valuable lesson. He does not need to be defined by Autism. I do not need to be defined by having children with Autism. I need to follow his example. He needs to be Porter. I need to be his Mother. We both need to be servants to our Heavenly Father. I'll let the Lord define who we are. No one else or thing. I love being the Mother to these kids. I learn so much!"
I hope that helps a little bit.
Also my 9-year-old has a high functioning autistic girl in her primary class. When this girl's mom went to the class one day and explained why she acted a little differently, it made a huge difference and Gracee was able to understand and help Eliza much more! That is just something to think about.
My heart goes out you!
Of course we could worry everyday what each of our children might have wrong with them, but that makes a pretty unhappy life.
Charlotte, you're such a good mom. I cry as I write this remembering how you came over with Damon and Claire to play when we lived in MA and read as many books as they wanted you to read to them. You gave and are most likely still giving so much of your time to them. That's what will matter in the end.
Rochelle, thanks for that quote. It is very comforting. Also, I'd love an invite to your blog, if it's all right with you.
Jamie, you're a sweetheart. I can't help but feel some regret because if ABA therapy starts at age 2-3, there's a 50% chance of losing the autism diagnosis.
Charlotte,
Doesn't sound fun what you are going through. I'd love to talk to you sometime. I worked with kids with Autism Spectrum Dx for a long time and have read a bit (I noticed that you have been too). I just went to an Occupational Therapy conference where one of the classes was taught by someone with Autism about how to work with kids with Autism spectrum. My heart goes out to you. Any way, if I can be of any help to you, let me know!
Cindy
Charlotte,
Visit my blog anytime. I have obviously checked out yours :) I am going to go private soon but I haven't figured it out and life is a little crazy right now.
Rochelle
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