News and commentary on the autism epidemic and my beautiful boy who is living with autism.
Information - coming together - Awareness.Best wishes
That was an interesting video. I saw some of our Edith Rose in that video. While I personally don't ascribe to the "cure" viewpoint, I found this video much better than the "Autism Everyday" video at Autism Speaks. There wasn't the sense of a parent "pity party" that "Autism Everyday" exuberates. Plus, there wasn't the horrid scene of a mother contemplating killing her autistic daughter by driving off of a bridge because she couldn't get the educational classroom she wanted as can be found in Autism Speak's video.I like what the one mother said about not giving up on a 2 1/2 year old child. The only slight cringe moment was when she said that she felt like someone had turned her home upside down and stole her child's soul. But, I'll let it slide as a metaphor in passing.The doctor's "wait and see" attitude, turns out to be right. We never know really how our autistic children will turn out, despite what medical professionals may tell us.Edith is still not potty trained, but there are good signs (fingers are crossed) that she is beginning to take steps in the right direction.She is also beginning to speak full sentences more and more.Edith is, by all indications, a very bright child. Her autism presents some impediments to her learning process, but it is not a curse, it is just who she is.I'm not so sure I believe that the boy in the video is no longer autistic. He is just functioning better developmentally now than he was earlier. I don't think a cure for autism is even possible. What I like about this video is the stress on acceptance and love for autistic children and equally the effort to help them educationally as much as possible.I haven't had the chance to check out TACA fully yet, but this video is refreshing to me, and miles above the offensive Autism Speaks video.Thanks for sharing this video.I wish the best for Chandler. With your love and affection for him, the future can't be nothing but bright for him.Congratulations on the award that you received as referenced in your previous post.Clay
What an inspiring clip
Hi Ginger,I would like to ask you a few questions about concerns with my son. Could you email me at critterbug79 (at) gmail dot com? Thanks,Christy
I loved this video, too! I hope they publish what therapies they did for the recovered boy. And I do believe it's possible to recover fully. I know two people who've done it. It think it helps to be higher functioning to begin with - less for the body to overcome. I can tell a big difference in Hutton from what little we've done so far, and I know he's going to continue to develop as he grows. I think helping him get rid of his various digestive issues (yeast, allergies) will lead to huge gains! Hope is very important for us, and dwelling on pity and sadness drags us down, though feeling sad every now and then is perfectly normal.
As an adult autistic, I don't want to be "cured." I don't want to "recover." I have a job. I live on my own. I have a partner. I achieved all of that without having been cured of anything. I did have a lot of help along the way that helped me to get to where I am today -- group therapy, individual therapy, lifeskills groups, and supportive friends. But that didn't cure me or make me want to be cured.
Rainbow,I am glad to hear that you have such a fulfilling life. I am hoping that Chandler will be able to have what you have when he is an adult.Thanks.
It's been a long, hard road to get to where I am today. I am sure my parents threw up their hands in despair many times when I was growing up because there wasn't a lot of information about austism spectrum disorders when I was growing up in the seventies. I wasn't "severe" enough to be institutionalized but I also wasn't what people would call "normal." (I'm still not normal!)Your son does need to know that even if he doesn't achieve what I have achieved you will still love him and accept him for who he is.
Each time I see a video featuring parents of autistic children, I'm taken back 6 yrs to when my own son was diagnosed. He is now 8 yrs and does very well. I would also suggest newly diagnosed families to read Karyn Seroussi's book 'Unravelling the Mystery of Autism and PDD'. She chronicles her journey of helping her own son overcome many aspects of autism. In it she also gives the basics of the GF/CF diet that she was intrumental in getting recognised as a genuine help to many children. She also lists the many supplements that her son was taking, and benefiting from. Her book is what got me started in helping my own son to succeed. It's a long bumpy road, but with great effort you can smooth out many of those bumps. Your child is worth every bit of effort.
I don't agree with the "cure", "recovery" viewpoint.I think what we are seeing when someone "recovers" is the adoption of some skills to appear to function neuro-typically. But, the person is still autistic.Today, at Edith's neurologist appointment, the doctor told me that Edith is no longer autistic because she is speaking better (she has started to speak with some sentences, thanks to her speech therapist)and because she can look you in the eye, therefore, she her autism diagnosis is now gone.What the neurologist didn't see in her brief time with Edith, apart from her hyperactivity and tantrums, was the many times that Edith babbles nonsense for conversation, her echolalia, her hand flapping, her other stimming, the moments that she "zones out" and doesn't respond to her name. It appeared to me that the neurologist was only basing autism on the Kanner definition of total withdrawl. I countered back that Autism is now recognized as a spectrum and that contrary to her opinion, Edith remains Autistic. She just isn't on the extreme withdrawal side of the spectrum.I am not praying for a "cure" for her autism (autism isn't a disease) nor for "recovery". Edith is the way God made her. She is autistic. We love her as she is. It is now our job to try and get her the best education as possible and to hope that she can develop, later on, the life skills that she will need to live her adult life independantly. But, even if she has to live with us when she's older we will gladly accept that and continue to do our best to take care of her.No one ripped the soul out of Edith. To the contrary, she is full of soul, and love, and humor and intellect and personality.The only thing we are praying for a cure for his her epilepsy. She has a history of seizures, many of which have lasted for over an hour.Now that is something we could do without! She hasn't had a seizure in a month now and we are crossing our fingers.Rainbow,While I am not autistic, and even though I am neuro-typical, I can appreciate your desire to not be "cured", or "recovered". I am glad to hear that your life is productive and satisfying.
Clay, I have seen twice on Discovery Medical channel the story of a small boy who was displaying autistic symptoms and also having seizures. His mom refused to put himon anti-seizure meds until the cause was identified. Long story - short, the child had an allergy to gluten (there was family hx of this allergy) when his diet was changed, his seizures began to disapear and w/therapy he was brought up to speed w/other kids his age. Incidently, a good friend of mine looked into her won daughters seizures and found that her anti-seizure med was excaberbating her seizures. She also had a few autistic symptoms. Apparently this can be due to essential nutrients not being absorbed properly. Look into Celiac's Disease if you suspect a gluten allergy in your Edith. I agree with you regarding 'curing' autism. I feel most 'cured' autistic persons/kids have learned more acceptable behaviors and thereby are better able to mask the life-long affliction that will always be present even if undetectable by others. I do not subcribe, however, to the thought that God wanted my son or your daughter or anyone else to be autistic. God did not make my son autistic, but God does make his imperfect parents patient, understanding and he gives us wisdom to make wise decisions on our son's behalf. How could my son love God if I told him that God chose to make his life this difficult? I prefer to teach him of God's promise to make life better for him because God loves very much and wants him to have a good life. Rev. 21:3,4
anonymous,Thanks for the advice. It is interesting about the gluten/casein diet stopping that child's seizures. I'll have to check into Celiac's disease. Her pediatrician doesn't think Edith has any signs that would indicate that she is gluten/casein intolerant.I already knew that anti-seizure medicines can cause seizures (oh the irony of that), in fact one of her medicines, Lamictal was working really great until it started approaching the levels that the neurologist wanted, then it started causing seizures.In fact, anti-seizure medicines are also the same types of medicines that psychiatrists use for some types of mental problems.I respectfully disagree with you regarding Edith being the way God made her. She didn't catch any disease that produced her autism. She simply regressed into autism at around 18 months.That being said, there is an alternative possibility. She contracted encephalitis at around that time. I don't know whether or not encephalitis can cause autism. If it can, then, you might be right.Either way, I don't view Edith's autism as a negative curse on her. It is just simply a part of who she is.My wife and I didn't experience the depression etc. that many other parents report to have experienced upon their child's diagnosis. This is because, like with her seizures, we were left in the dark about why she was behaving the way she was (head banging screaming, biting herself in the wrists, throwing things, screaming and crying alot).In fact, we were constantly ignored by her first neurologist, while the second kept insisting she was spoiled and recommended parenting books for us to read.So, as horrible is this probably sounds, it was actually somewhat of a relief when her diagnosis of autism, adhd came. At least we then knew what was going on and could begin to start researching what we should try and do to help her.
Clay,I am so glad someone mentioned the gfcf diet to you. I know of a number of autistic kids whose seizures went away after getting on it.I think I have the info for one of the families if you would like to talk to them.
Ginger,I would very much like to talk to that family. Last night Edith had 3 big seizures. The first one subsided in the ambulance. The other two occured in the pediatric emergency room. What really scared us was that her left arm became paralyzed and we feared for the worst. Something like that had never happened before.In the end she regained use of her arm. Turns out what happened to her is what is called "Todd's Syndrome". Basically, the brain is so worn out and numb after the trauma of the seizure activity that it shuts down some of it's services.Her behavior over the last month has regressed back to violence (to herself and others i.e. biting her wrists, throwing things, biting, scratching and hitting others) and her hyperactivity and nervousness is through the roof. It only takes a brief observation of her to see that she is in torment right now.Today, her behavior was extreme. The base pediatrician is worried. My wife is completly worn out. At first she wanted to get Edith into the Brentwood Hospital (it has a psychiatric ward with one of the best child psychiatrists in town who isn't open to new patients and the only way to see him is to get admitted into the hospital), but, alas, Edith doesn't qualify. They won't see her because her seizures aren't under control.Anyways, sorry for the rant, yeah personal testimony from other parents is always welcome if they are willing.Although her behavior is a major concern for us, her propensity to have prolonged seizures is what has us the most concerned.Her seizures can kill her. Her autism, ADHD won't.
Clay,Ugh... that is just heartbreaking.I found their number and will call them today. "Her seizures can kill her. Her autism, ADHD won't."Conventional wisdom says that these are two different things. The thing that parents who have been where you are is that they are both symptoms of the same dysfunctional physical processes.Parents who successfully treat the seizures via GFCF find that the rest of their "autistic" symptoms improve.Of course Chandler never had seizures, but when we put him on the gfcf diet, the horrible constipation that he had since he was three weeks old ended and he also began answering to his name and making eye contact. All this started after only two days on the diet.Can you email me your phone number so I can get you connected with them?
Ginger,Edith's behavior after these last 3 seizures (last Tuesday) has regressed back to screaming, biting her wrists, biting us, scratching us, throwing things at us, hittin us etc. I am at a loss right now as to what is going on.We do have a referral to take her to the Dennis Developmental Center in Little Rock, Arkansas. The form I filled out today talks more about Autism and ADHD. Nothing is mentioned regarding epilepsy. Which as I have said before is the biggest threat to her. A seizure can kill her, hand flapping etc of autism can't.Edith has had bouts of constipation before, but they were usually connected to after hospitalization times. I don't know whether the gluten/casein diet is right for her, since she has never exhibited any signs (i.e. yeast infections) before.Hopefully the Dennis Development Center will test her throughly enought to identify if her diet is wrong or right. Her latest preservation is for peanut butter and jelly. This is to the point that she expects it for breakfast, lunch and dinner. We stopped giving her peanut butter for 5 days to see if it improved her behavior but it hasn't.I guess we are going to have to see what the Dennis Developmental Center finds out for us. Hopefully, we will finally get an answer as to what is causing all of this and how to deal with it.My e-mail address is: firstname.lastname@example.org. Send me an e-mail and I will send you my telephone number. If you want to see what Edith looks like, I will send it to you via e-mail. I trust you. I don't trust the entire Internet, which is one of the main reasons that I have never started a blog on Edith. Besides, you and Kristine (Autisim Vox) and others have already done an excellent job of representing what it is to be a parent of an autistic child. What more could I possibly add?Clay
Ginger,Since you haven't responded to my comment on this post to e-mail me, what is your e-mail address? I would like to speak with the parents of the autistic child that you spoke of who had some success with the gf/cf diet.
Clay,So sorry I missed your comment! Will get you the info now.G
Rainbow,Thanks for sharing your story. I love hearing from adult autistics who want to share their stories, because we really have to guess at many of the the things that are going on with Chandler. Much of what he is going through we you have already gone through and can give us a peek into his world.Over and over we have heard the message from people like you that we need to make sure that he feels treasured, and the message has gotten through loud and clear. It has made me realize how easily it is for me to slip into not interacting with him when we are alone and he isn't demanding my attention. I find myself going, "wait... if his brother was in the room instead of him, I would be talking to him right now, I need to go play with Chandler". It is definitely a hard road for us, but we are so crazy about Chandler. No matter how hard it was that day, when we go to bed at night we always believe it was worth it, and every night we share stories with each other about him. "Today he kissed me 10 times". "Well he asked me to take a nap with him". "Really? What did he say"...I know that many adult autistics see us 'curbies' as not valuing their children the way they should be, but I really feel like nothing could be farther from the truth. We love him so much and want to make him as healthy as possible and give him the best chance he can in this screwed up world. But no matter what, we will let him know how much we love and accept him for who ever he is until our last breath.
Post a Comment