When Justin was born I was told he was a healthy baby boy. Apgars were 9/9, he was so cute, still is......but now he is not a 'healthy baby boy'. Somewhere, somehow, something went wrong. Now I get tiny windows of my boy and a whole lot of him somewhat inside of himself. All I know is that my son started developing fine, he started the Mama, Dada, Gaga then suddenly stopped. He started drooling....all the time. Even at over a year old he was still drooling, needed a bib at all times. When I'd ask his pediatrician she just said it might've been the teething, because Justin was a late teether. Nevertheless, my son was developing normal up until between 8 mos. & a year he started to change. I am at times angry, sad, frustrated because there are just a lot more questions than answers. All I know is that I have to try and make this a successful fundraising attempt in order to get my son the treatment that could potentially recover him. So here I am, spilling my guts out to many strangers, hoping for a miracle; that God by some miracle will grant us this wish. So we can only ask and see what happens.
When Justin was younger and we were transitioning to solids it was so difficult. During that time I had no idea that he was autistic. I believed there were certain things here and there that just didn't seem right, but as a parent, you never want to believe there is anything seriously wrong with your child and I'd mention little things of concern to his pediatrician, family members, friends, and I'd get the ole' I'm sure it's nothing....kids develop differently, he's fine.
I noticed he was extremely picky, irritable more than other children and didn't quite play well with toys, ok, who am I kidding, he
didn't play appropriately with toys. He was absolutely attached to mommy, still is....
When he was diagnosed, it was like the biggest fist ever, punched me right in the stomach. I cannot express enough the heartache to hear your child has a permanent illness that you cannot wipe away or cure with any regimen. I cried at home, I blamed myself, '
what did I do, what did I eat when he was in my belly, the stress maybe?.....there isn't enough room on this blog for how much I beat myself up inside......I was angry, I was sad, I was depressed, I wanted to know how....and .......no answers. It's a mystery??? Yet more and more children were becoming autistic and more and more questions left unanswered.
Why I even had a medical professional say to me quickly after my first diagnosis when I was numb at what I had just heard,
"and don't bother with the alternative things out there that promise cures, there is just no scientific proof"......not only did I leave that office with a devastating diagnosis for my baby, but my hope, ..... before it even entering my heart, was stolen at the moment she said that little bit of information, my hope was taken away......
That was before I know-- what I know now. I was not given the answers to my satisfaction of all the questions that I had, so from the moment that I found out that my son was Autistic onward, I became pro-active and began reading about all things Autistic. I'm still learning today. But I've read enough to have found HOPE. Hope in Biomedical and Hyperbaric Oxygen Treatments. I've been educating myself, surrounding myself with both parents of autistic children who have and haven't tried these alternative treatments, I've spoken with Doctors and other medical professionals who believe in the treatment and I'm going to try them if it's the last thing I do! My boy may not be able to talk, but he has a mommy that will talk enough for the both of us and stand up for his right, his right to be recovered from this horrible disorder, I don't even know what to call it, I've referred to it as a disease......all I know is that my beautiful little boy is somewhere in there and I'm determined to bring him out.
He only eats the same thing day in and day out, not because I am a bad parent and wish for him to eat these things, that is
all he will eat. It is part of his Sensory Integration Disorder. He has such an aversion to new foods, he gags. We've tried different feeding groups, different suggestions from just about anyone, nothing works. I am really desperate to get him on the Gluten Free and Casein Free Diet (GFCF), but I don't see how. Every day Justin eats the same thing, for breakfast, Apple Jacks Cereal with no milk, dry. For lunch either Burger King Chicken Nuggets (only type he will eat and trust me, you cannot trick him), or the other which I limit because of his constipation problems, TGIF Moz. Cheese Sticks, the only snacks he will have is Doritos or Cheetos and those he really doesn't eat much anymore. I feel so bad because sometimes he is tired of eating the same thing and will only ask for say, ......apple jacks the whole day! I am an organics person, I prefer organic, not that we can afford it much these days, but in a perfect world my home would consist of only organic food, cleaning supplies and everything else, but ofcourse the stuff that will kill ya is what I can afford....lol.....
Comments (4)
I feel for you, truly I do. I have two sons, one "typical" and the other is autistic. Feeding issues galore and never thought he would progress beyond 3rd stage baby food and things that could melt in his mouth before having to swallow them. Consequently we've had dental issues. The good news is that he has progressed, slowly but steadily and now eats a larger variety of food than his typical sibling. Don't ever give up offering him new items and reintroducing previously rejected foods as well. You just never know when they are ready for a change or experiment. :)
I wish I could offer some words of wisdom, but I don't have any. I do agree with the previous poster in that you should never give up hope on getting your son to try new things.
Some folks dig this, others don't but it could be worth a thumb-through: http://www.amazon.com/Louder-Than-Words-Mothers-Journey/dp/0525950117
Best of luck with Justin.
I'm an older lady with two normal (ha!) children, but I did just want to offer you a word of encouragement.
First, try to remember that to some extent, ALL children are weird. My so-called normal kids had habits that I was certain made them mentally odd. My son walked around until age ten or so with his arms bent at the elbows and hands in front of him, like a robot. It worried us. Today he is a little bit of an eccentric artist type, but normal. I have a friend whose son, at 18 months not only did not talk but was obsessed by fans. They would take him to the state fair and all he could do in the barns was point at the fans cooling the animals. He would sleep with a table fan, I kid you not. He is perfectly normal today, an engineer. I'm not saying your son is not autistic. I'm saying, be careful of thinking that everything he does has to do with autusm. At his age, ALL CHILDREN ARE WEIRD.
My son also had a friend whom I am certain was autustic, in fifth grade. He had been thrown out of about five schools for violent acts such as beating up kids on the playground, or spitting in their drinks. We had him to our house for a visit, and I could tell something was different about him. He obsessed on a noise-making toy my son had-- it was like he couldn't tear himself away from it. We went to the park, but he was kind of minimally 'there'. But my son liked him, and I had a feeling he was going to be OK. Well, he graduated from a Big Ten university with a degree in engineering. There was certainly nothing wrong with his brain.
Second, just having posted on this site should tell you that you are not alone. People are much more aware of autism than they used to be. Get what help you can, encourage him in what he can do well and/or enjoys, and be a safe person for him. Help him find other 'safe' people. He can still learn right from wrong, and to serve in some capacity. Autism does not make him invaluable to the world: this world needs all the help it can get.
Third, you didn't do anything wrong. This is an opportunity for you to acknowledge that you are not an island, that you need the help and love of others, and that you are in need of strength. I am a Christian. In trials of this kind, I truly believe God changes our lives to show us our need of dependence on Him and on the people of God. I encourage you to find a church that believes this as a vital part of church life. Certainly it is how Christ would have us live in order to glorify Him. Any church that doesn't should be viewed with doubt.
Your life has changed, but you're going to be OK. Be the kind of friend to other moms of autistic kids that you need for a friend, and I think you'll find that in the midst of need, life can be quite rich.
Hang in there.