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Autistic Child: "Mommy, I hate my brain, I just need a new brain"

2012-05-03 15:29
Autistic Child

Being the mother of a child with autism, I describe my experiences with noticing and denying my child had autism, difficulties with communication, getting services, and how the family coped and improved our lives.

I knew something was wrong even before she was a year old. She had many of the warning signs of autism. But I was in denial. I did not want to admit that my child may have autism. I think I thought that if I denied it long enough, it would go away. Even so, I did realize she needed to be tested for a disability, so at age two I took her in. The fact that she could not communicate made it impossible for testing to occur. For reasons I do not understand, we were told they denied her placement in the county preschool for children with disabilities. So, a few weeks later when she turned three, I had them try again. This time, she qualifed.

At this point, she still was not diagnosed with autsim and I was content that she was getting services. But the word autism rang through me each time she would have a meltdown because she could not communicate with us. She would cry and throw things, such as Christmas tree decorations. One year, she destroyed a large part of the tree ornaments. As I watched other children in her class who were autistic, I think it slowly crept into my mind that my daughter needed more help. I began to accept that autism was not necessarily a bad thing. The day she bolted in front of a large bus in the road, I knew I had to get her some help. She was diagnosed with high functioning autism soon after.

She did not begin to talk until she was four, a common sign of autism. The school had been teaching the children how to use sign language and this was the major starting point for her. We wanted to learn sign language of course so we could work with her at home, but no classes were offered for the parents. We found this to be the case with many struggles that she had. No insurance also meant that fewer services would be available to our daughter. Many of the ways we adapted was through reading books, talking with friends who had disabled children, and sometimes begging for help from the public school system. One psychologist spent his own time to teach us some skills to use with the many different behavioral issues that come up with autism. I will forever be thankful for that man who offered his help without compensation.

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We still struggle, and we have to fight to get what we need. The wonderful schools that are available for children with autism cost money that we do not have. We do not get counseling or training because we do not have the money, and when classes are held for parents with children with autism, we often cannot attend because we are working during those hours and variable times for the courses are not offered.

Many of the struggles we went through when she was younger are now gone, but with changes in age come more struggles. She often has severe meltdowns, sometimes to the point of being violent. Finding a doctor to help manage these autistic behaviors was like pulling teeth. But when we finally found one, I felt like crying because I knew we could help our daughter and help the family as well. A small dose of medication began to help her impulsiveness and with the scaled down meltdowns, we could then work with her. Each family member takes a part when she is melting down. The younger ones know to leave her alone and the older ones know that sometimes their presence actually gives her a sense of comfort.

One day I asked her what made her so sad to cause a meltdown. She hit her head with her fist and said, “I hate my brain. I just need a new brain.” With tears streaming down my cheeks, I held her in my arms and stroked her hair. We are so thankful for this little girl in our lives. We may hate autism at times but she brings such joy to us that we never would have known without the autism. Sure, we want to give her a new brain and cure the autism so she could be normal, but would we have those same blessings in our lives if we changed her? Would we have grown and developed like we did if we changed her?

Note: The picture is the child mentioned in the story

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Comments

Awesome story!
This story made me cry , God bless her and bless all autistic children and adult May God help u and ur family to get through this blessing
Hi Can someone tell me whats the first step to get a dianostic? Where should i go? I live in texas Thank you
Try writing your local school district and requesting a psychoeducational evaluation. Call a local advocate from the yellow pages and ask for advice. They would probably get you started. The school may deny the disability, so you should go to your primary care physician or family doctor, too. Ask for a referral. Or, call your insurance company. Some that I have used have a behavioral health service and they will pay for an evaluation there. No insurance? Ask the advocate if he/she knows where you can start. We have Regional Centers in California that help with services. Don't know anything about Texas. But definitely get a letter to the school district ASAP. Good luck!
People can mean very different things when using the word 'tantrum' or 'meltdown'. Regardless which word is used, some scenarios can seem uncontrollable and be severe enough to pose a risk of injury. At that level of severity it may be Immature Adrenaline Systems Overreactivity (IASO). IASO is not a mental illness. However, autism and other mental illnesses can make a child more susceptible or prone to Immature Adrenaline Systems Overreactivity. IASO can also occur in people with no diagnosis of mental illness. IASO includes two different adrenaline crisis states: the beta-adrenergic” rage reaction (evading danger), and the “alpha-adrenergic” rage reaction (fighting perceived threats.) These two states are naturally built into all humans, but can occur in unexpected situations for some people, such as autistics. IASO is a new diagnosis and treatment regimine not yet covered by DSM which has been very successful in helping patients manage and eliminate such behaviors. The regimine is based on adrenaline acting medication (not psychiatric drugs) and often provides rapid results as well as the opportunity to eventually overcome these bahaviors and cease the treatment. Search for "Hope for the Violently Aggressive Child" for more information.
The story of thi family sounds sooo familiar. I too didn't want a diagnosis of autism. With the diagnosis for our family actually came relief and an answer. It finally explained why my 9 year old son did and why he said what he did. It made sense to most of the family. Not everyone was accepting of the evaluation until I did my research. Now the entire immediate family gets it. I thank you for posting this. It helps tremendously. Thank you! God bless u and your family!
The story of thi family sounds sooo familiar. I too didn't want a diagnosis of autism. With the diagnosis for our family actually came relief and an answer. It finally explained why my 9 year old son did what he did and why he said what he did. It made sense to most of the family. Not everyone was accepting of the evaluation until I did my research. Now the entire immediate family gets it. I thank you for posting this. It helps tremendously. Thank you! God bless you!
The story of thi family sounds sooo familiar. I too didn't want a diagnosis of autism. With the diagnosis for our family actually came relief and an answer. It finally explained why my 9 year old son did what he did and why he said what he did. It made sense to most of the family. Not everyone was accepting of the evaluation until I did my research. Now the entire immediate family gets it. I thank you for posting this. It helps tremendously. Thank you! God bless you!
This described our situation in a lot of ways. But my daughter has Asperger's. I'm thankful that she was verbal early on but she couldn't communicate her needs due to the delay in pragmatics. Being verbal prevented us from getting services. It wasn't until kindergarten when her meltdowns became worse and she was suspended that we finally got an IEP after months of testing. I'm so proud of all you're doing for your little girl. I wish I could be proud of myself. We had a "I want a new brain" comment from her the other day and it broke my heart.
Your story was very heartfelt, thank you for sharing it. I just want to let you know that.
This story hits so close to home as we have endured the struggles with Autism for the past 7 years....my daughter is such a blessing in our lives; with every tragedy has come a triumph. But it hurts as a momma to hear her now say "Momma, why is my brain so dumb?". They get it. Amazing as it is, but children with autism are so unbelievably intelligent....just in different ways than most of us are. She's my rockstar. Payton, you're brain isn't' dumb, it just thinks a little differently. Love, the momma. :)
Thank you for sharing. I have 5 yr old twins and my son was diagnosed with Aspergers while his twin sister has speech and cognitive delays. Life is hard at times for is, but the way I see them grow, makes my their life with me more precious. They need me, but I need them. Us, mothers, make sacrifices, tht no one sees...but ppl only knew how special they make us feel, they wouldn't understand our tight bonds with our kids. If I could change my kids "disability," I would. I will fight for them after I love them up.
This story really hit home for me. My 7yr old son has the same issues and even said the something similar thing about his brain which broke my heart and made me cry (still does till this day). Since having to change insurance plans, I am having a very hard time getting him the help he needs. What needs to happen to make government & insurance agencies realize that this disorder is REAL and our children need HELP. When is enough enough?
My older brother has autisum but he can not speek and this frustrates him a lot to the point of somtimes being agressive (unintentionaly) he just needs to get it out and dosent understand that in doing so he can cause harm but he is a great kid he is now 21 its still verry hard on us my parents and I can't stop thinking what will happen once they can't care for him anymore but I guess we will just have to wait and see I do wish he was a normal kid so I could have grown up with that big brother figure but that would have changed who I am now completely I had to take care of him since I was about 7 or 8 when my mom would have to run out on errands and that made me mature at a young age and I am verry thankfull for that ... I Love You Eddy!!!!
I remember reading a perspective that touches on this topic. I remember reading how an autistic girl's parents were taught she could never be happy while also being autistic. I remember reading about how the girl had low self esteem, and how she grew out of it, learning to love herself. How my heart aches for those who haven't accepted themselves! I don't, I can't believe that it's solely based on how their brain is. I believe that the ones who hate themselves have been taught that self-hatred. We need to accept every square inch of those we love who are autistic, so they have no reason to self-hate because of their brains. I'm sorry if I offend people, but it needed saying.
Our daughter who is nine and half was diagnosed at 21 months with severe autism. We were told she would likely never make eye contact or show emotion or expressions to us. I knew the doctors were wrong, since I have autism as well and the misconception about autism and emotions is still quite prevalent. Long story short, she still has the speech of a 2 year old, comprehension and computer skills of a teenager, and is able to make eye contact and show affection. We worked hard with her and it helped that I have autism as well to understand where she is and "translate" for her. The biggest changes we saw were when we were able to also diagnose the acute anxiety and address the anxiety issue. We have her on half a tablet of Citalopram to manage the anxiety, which helps her be in the space to learn , live, and enjoy life. She is a much different child having dealt and addressed the acute anxiety which often accompanies the autism. She has defied all the traditional understanding of how to deal with autism and she will continue to do so, but she will have autism her entire life. We are making sure we put the support systems in place tohelp the world work for her.
This story hit me. My son is autistic and 13. He did not even receive his diagnosis until he was 12. He had wrapped a mouse cord around his teacher's neck and tried to choke him during a meltdown. The court ordered a competency evaluation and this is when I was told of his autism. I knew for years that something was wrong. When he was a year old he got kicked out of daycare bec he was biting the other babies all the time. He grew increasingly violent, had speech delays, etc. When he was 10 or 11 his counselors at the local mental health clinic for kids mentioned that maybe he has aspbergers but the resident psychiatrist refused to diagnose him or screen him for autism bec "it doesn't matter what the label is, it is not going to change the day to day reality of dealing with him." Well, bec of this, we went years without being able to get the kind of services in the home that we need. He is just now getting connected with DDD services, but I have been told that the most effective time for services is when they are young. So in short, if you think there is something wrong, there most likely is, and don't give up on finding the answers. Fight for you and your child. If you don't get the appropriate help from one doctor, do not be afraid to seek out help from another. I was grateful for the when the psychiatrist from the mental hospital who did his evaluation told me he was autistic. She was worried I would be upset, but I told her quite the opposite. I was relieved to finally have an answer to all the questions I had had for so many years.
I thought I would give an update on my daughter who is turning 10 soon. She has been on Citalopram coming up on one year to deal with her acute anxiety. With the anxiety managed, the meltdowns are brief and only a couple times a week (compared to the 5-6 hours a day prior to us uncovering the anxiety underlying the autism). She is able to spend 3-4 hours a day with her 4 1/2 year old sister now in the "sharing room" (which is what we renamed our family room so that the girls would learn to play together in the room). We go on almost daily trips to the supermarket, post office, bank, etc... and where she used to meltdown around the noise of other children, on Monday she watched the landing of the Mars rover in a party of 40 people of all ages and could handle even the cheers of all the people when they celebrated the landing. So we have gone from a child one year ago who wouldn't leave her room, couldn't be on the same side of the house as her sister, would relive herself in her room, and tear holes in the drywall of her room and wouldn't say even a single phrase to now looking to going to school in six months and able to read and write stories, play with her sister, and go out in public. Too many people are willing to focus on the autism and trying to either cure or cope with the autism, but without dealing with the underlying anxiety and frustration that many of us with autism have, we won't make the progress like I have seen in my daughter. To go in one year from being told she will never go to school or leave her room, to being definitely "quirky" but also extremely creative, funny, and compassionate makes it worth everyone looking at other factors in their children.