My daughter can not tolerate certain textures. She can't stand mashed potatoes, eggs of any sort, mushy noodles, cereal that has been in milk too long, or anything of that consistency. She can't stand scratchy materials or socks that don't line up just right. She can not stand having her hair brushed, washed, or touched.
My daughter can't process stimuli. She doesn't know what to do with herself in large crowds, a lot of action, or loud places. She is known to spin out of control, cry, scream, cover her ears, and generally melt down completely. She is often looked at like a "bad" child in public. I get the "looks", quite often.
My daughter frequently tells us she is bad, that she has bad thoughts, that there are scary things in her head that will hurt her. She talks all the time about cartoon characters like they are her best friends, and told me today that she likes them better than her real friends. I actually understand this because her pretend friends aren't unpredictable. They don't frustrate her like other children do.
My daughter is on the autism spectrum. She was diagnosed by Tufts Medical Center (Boston University Medical Center) when she was just 2 years old. Months after her diagnosis we were advised to apply for SSI for her since there are services that she can benefit from, but only if she is receiving SSI. In just a few short weeks we will be attending a federal appeal hearing for our daughter. She has been denied 3 times, despite their own doctor stating that she is absolutely an autistic child. At this point we can only pray for them to finally approve her so she can get these benefits she so badly needs, and rightfully deserves.
Why am I posting all of this?
April is Autism Awareness month... I know anyone with a television is aware of autism. I know its been shoved down everyone's throats. So this year, I am making everyone aware of the struggles we face as parents, the struggles our autistic children face, and the way our own government overlooks or denies our children the services they need.
I love my daughter. I want what is best for her... and I will not stop fighting until she gets what she needs... one way or another.
16 comments:
Thank you for sharing. I don't think I ever read far enough back to be aware of this. I knew about the SSI battle, but not the specifics of the situation.
I have 3 friends in my town who have children with autism. Luckily they all attend Kennedy Krieger Institute and it has really helped the children.
I have another blogger friend in the Chicago area whose child is Autistic as well. (Doubleknot's Ruminations.)
As I read your words, I was struck with some of the dietary changes you work with in order to help your daughter. These don't seem all that odd to me as I'm used to adjusting foods and diets for health reasons. But 2 of the other items on your list did hit me. The day care you recently enrolled the girls in seemed more significant, and how to get your daughters hair clean and neat.
It seemed that finding a day care that both children enjoyed and thrived in was a bigger challenge than I first understood it to be, with even more benefits for them than I realized. That makes it even more awesome.
I know there are dry shampoos and detangling products but you said she doesn't like brushing either. I cannot imagine the challenge of caring for her needs and well-being with as little upset or distress as possible.
Thank you for helping us all stay aware of the needs of those with Autism. And I'm sending much positive thought and energy your way for the hearing.
huggggggggg
My sweet little love :)
She is amazing. She is inspiring. She is beautiful and sweet and smart and is defying everything "they" say. I've watch her grow into the beautiful young girl that she is today and I am amazed at how far she has come. Whether she has SSI to back her up or not. Whether she qualifies for services or not. She is still doing amazing and it's all because of how much you fight for her. You are an amazing mom and she's lucky to have you. I love you both.
Compared to where she was at the age of two she has come a very long way. I had a child I couldn't really hold, one that hit and bit herself everyday several times a day (this still happens, but its very rare) and was for the most part nonverbal. Early Intervention was called in and they taught her sign language and gently worked her into making fleeting eye contact and tolerating being held. They worked with her 20 hours a week one on one every week for almost a year.
The daycare search was a nightmare as I would be very open with the providers prior to her starting and then two months later they would begin telling me that they couldn't handle it. We eventually found the daycare she is in now, and this provider's own daughter (who is older than I am now) had severe anxiety growing up. This woman is wonderful with my daughter and always takes her needs into consideration without treating her very differently from the other kids. She is in an integrated preschool class of 12 children. Six of these kids are somewhere on the autism spectrum, and six are on target developmentally.
The hair thing... its a challenge and most mornings involves a lot of tears. She is better with that too, though. Its all a learning experience :)
Hugs for you and all that you have been through. This is the first time I will be telling anyone this but I have been going back and forth about putting together a fundraiser for next April. I used to work with kids diagnosed with ASD and I loved every minute of it. I always miss working with the kids and had decided not to do it any more because 1) I got way too attached to every kid I worked with 2) I got burned out from the politics you have to deal with working with the insurance companies and government and 3) it doesn't pay well and living in Philly is really expensive.
I have another friend who has a child with Autism. My husband knows a family with 6 children 4 of whom are somewhere on the ASD. So, for the last 3 months or so I have been thinking about organizing a fundraiser and donating the money to an Autism foundation to use for research. Now, I have one more reason to strengthen my resolve to pull this together.
Thank you for sharing your life with us.
That is an awesome idea! I know that we all know about autism, but people rarely see the challenges we (and our children) face on a daily basis. I love my girl just like she is, but when her frustration peaks I would give anything to give her some peace of mind.
*hugs*
She sounds amazing! I had a friend with an autistic child. We kind of went or separate ways when I tossed the child out of the way of a speeding car and almost got hit myself. (the mirror of the car was less then a few inches from me, the whole car would have hit him)The child had a fit! I can understand that i was was told off for not being "nicer". Sadly this parent says now that -all- the experts are wrong and this one is right calling it early childhood onset Bi-polar. *shakes her head* I feel for the child but there is nothing we can do. (I looked in to it)
In Rhya's case we may actually be looking at early onset schizophrenia because of some of her more quirky symptoms. We are not discounting anything but from what we've found and heard all of the early onset psych disorders are essentially autism until puberty.
Its awesome that you saved the child... I can imagine that child had a fit, but as a parent I always say I'd rather a screaming child than a dead one!
Thank you for sharing this. I have a child with bipolar but that doesnt seem has hard to deal with as what you face. And I understand the fight with the SSI which we have been through as well. Seems they want to give it to people that seem prefectly fine and that work rather then ones that could benefit from it the most. I dont understand there ways half the time and dont try to. I feel for you and realize that it must be a hard thing to go through but I know if anyone can do it it is you. take care of yourself and her and again thanks for coming out and sharing. I do remember thinking the same thing as tapestry about the daycare though. I couldnt figure out why it was such a challenge but now I understand completely.
Hi sweetie!
Wow! I certainly didn't know about this before but I'm sending you and your whole family biggest hugs and loads of cyber-support through all of this. As far as the SSI, well, that is definitely always an uphill battle, regardless of the proof or documentation or wealth of information. Such is the government, lol.
As for the autism, I've worked with autistic kids and adults and now I am even more impressed than ever with you! It takes tremendous patience and undying love to do what you are doing and maintain such a healthy approach to it all. As for your daughter, well, she is a very special gift, as you already know and fully appreciate.
Your love and sweetness pour forth in this post and in all you do!
Biggest hugs!
I can't understand what it is like to have a child with autism. However, I DO understand the autism spectrum and I definitely DO understand it can be a frustrating thing... especially when one isn't receiving the help and services one deserves.
I am a TSS and I work with 3 boys. One has PDD (pervasive developmental disorder... which is like a step above autism) and the other two are somewhere on the autism spectrum.
I can't believe that SSI would keep denying your little girl... especially when they have their own doctor saying "yes, she has autism." I find that incredulous. And people wonder why children with autism are given such a bad rep. It's like, they can't get the services they need and deserve and so they continue to "act out" because they don't have the skills they need... and then the parent's and the child are judged by society as being "bad." Ug. It disgusts me.
Good luck at your hearing. *HUGS* I'll be sending good vibs for you and your little girl to finally get what you so richly deserve!
hi there ppl. I'm really into shoes and I had been searching allowing for regarding that particular brand. The prices for the shoes were about 220 bucks everwhere. But completely I found this location selling them as a remedy for half price. I in reality love these [url=http://www.shoesempire.com]prada sneakers[/url]. I will definetly order these. what can you tell me about these?
good evening dudes. I'm actually into shoes and I have been looking allowing for regarding that particular brand. The prices for the shoes were around 300 pounds everwhere. But for all I found this locate selling them someone is concerned half price. I exceptionally like those [url=http://www.shoesempire.com]prada sneakers[/url]. I will absolutely order them. what can you say about it?
Hello. And Bye.
good afternoon bros. I'm actually into shoes and I had been digging for that meticulous brand. The prices as regards the boots are approximately 230 bucks on every page. But definitively I found this area selling them as a remedy for half price. I in reality like those [url=http://www.shoesempire.com]gucci sneakers[/url]. I will probably buy them. what is your opinion?
good morning ppl. I'm actually into shoes and I have been looking for that singular model. The prices due to the fact that the boots were all over 210 pounds on every site. But completely I found this area selling them for the benefit of half price. I in reality like those [url=http://www.shoesempire.com]gucci sneakers[/url]. I will probably purchase these. what do you think?
I love submissivesparks.blogspot.com! Here I always find a lot of helpful information for myself. Thanks you for your work.
Webmaster of http://loveepicentre.com and http://movieszone.eu
Best regards
Post a Comment