Wednesday, June 16, 2010

Cure OR Acceptance?

Yes, it is a hot topic among the community of us who have children affected by ASD. On one hand you have folks who have seen changes happen. A "cure" persay...something that made their children act, talk, react, and socialize like most other children out there. On the other hand, you have parents who are happy with what they have been given and say that there is no need for these cures.

I can see both sides of the fence. I'm just not sure where I stand on it. We did the gluten-free, casein-free diet for a while, but it was tough. We finally went off of the diet and Henry actually started doing better. So...I'm going to guess that gluten wasn't our issue.

I have looked into the biomedical research. It's scary. Needles and pricks and hyperbaric chambers. I'm just not sure I can put my sweet baby through all of that.

I've researched supplements. I may begin to use a few eventually. I have just yet to find a book to tell me about them all without the author plugging their own agenda.

As much as I would love for my son not to struggle with things in life, I just don't know that I can put all of my eggs in one basket to try to change what he is. I love him the way he is. Everything about him is awesome. So, for now I guess I'm on the side of the fence that is just looking for acceptance. Who on Earth knows where I'll be a month from now, but I'm sure that where ever it is and whatever we decide, that Henry will have the happiest of all lives.

Now....on to vacation. :)

Wednesday, June 9, 2010

Singing their praises

You know, we spend so much time in therapy that sometimes we forget to step back and look. Look for what? Well, is the therapy working? Every child is different so what one may learn from a type of therapy, another may not. Some children don't tolerate ABA therapy, yet when my daughter had speech issues, ABA was all that would do her any good. Play therapy wasn't cutting it for her. But we are currently trying play therapy for Henry because our insurance isn't all straightened out in order for him to receive ABA yet. Thank God our therapy is doing some good.

I noticed this yesterday while out. Normally a trip to the store is so stressful that I just wait for my husband to get home and either we all go or one of us goes alone. Not yesterday. I figured that it is way past time for me to figure this out. I decided to start with a quick trip and if that went well, we would add a little more. So I went to the grocery store just for one thing. It went great! Load back up in the car and away we went to that big department know which one I'm talking about. That place can inspire meltdowns in the most composed adult. I put the kids in a buggy and headed straight for the bakery for a box of cookies, just in case ya know. Didn't need them!! Then I really pushed my luck and went to that big named club store. You know the one where you can buy a year's supply of cheesy puffs all at once! One little tantrum, but Mama was smart. She had put the aforementioned cookies in the diaper bag. Problem solved. :) Henry even sat beside of his little sister in one of the store's awesome buggies that has TWO seats up front! Who thought of that genius idea?! Normally he would have hit her or bitten her....or something. And then I would have had 2 screaming children in the middle of a store. That describes almost every trip for me anyway, 2 screaming children. But I had to man up and go and it worked out for the best.

This shows me that Henry has come SO FAR in these past few months. He not only handled going into public places well (which used to be a big problem), he handled going to several places well! No, not well. Great!

In the past few days he has also picked up on more words. He is now saying "Thank you. Thank you." in the correct context. It's the cutest thing ever. I'm not sure where he picked up saying it twice and sounding like a Las Vegas Elvis impersonator, but it's adorable. "Drink" is becoming more clear, as it "Eat". It's wonderful to have some communication. It makes things much easier when I don't have to guess at what he wants.

I'm so proud of how far Henry has come in a short time. It gives me hope that in the future (and maybe not that far off in the future) he will no longer be considered as someone with "severe" problems. Because in reality, he doesn't really have "problems" at all. He has quirks and WE just have to learn to work with them.

Saturday, June 5, 2010

One day the world will understand. (A Mama's Lesson)

These are words that I never want to tell my son, but I know the day will come when I will have to explain someone else's lack of knowledge to him. Yet, apparently there are people in this world who still think saying things like "your child isn't average" or words like "abnormal" are okay ways to describe an autistic child.

People should know (so hopefully, those people will eventually find this blog and maybe learn from it!) that it is not okay to consider my child, or any other child, below average or abnormal. There is nothing abnormal about my son. What is normal? Who decides that? Meriam-Webster Dictionary defines it as : "conforming to a type, standard, or regular pattern." Well, no one in my family has ever conformed, so I guess none of us are normal.

I realize that we live in a time where most people have given up on being politically correct. I will be the first to admit that I've slung words around that I am NOT proud of and yes...sometimes things come out of my mouth NOW that I hate myself for later. It almost seems though, that sometimes people pride themselves on being as un-PC as possible. And then sometimes the person doesn't even realize it because the world has become so desensitized to everything. That isn't their fault. It's ignorance and you know what they say about that being bliss...

I try not to get angry when people say out of the way things. It does hurt, but I try to remind myself that they aren't in these shoes. They don't know. My fear is though, that they never will know because so many people DON'T WANT to understand how they make others feel. Sometimes I do get angry though and say things that probably shouldn't come out of a Mama's mouth (well, not until the kids are out of earshot anyway). But...

I guess, along with the very people that chap my hide sometimes, I'm still learning too.

Friday, June 4, 2010

A "No Therapy Allowed" Day

Henry spends so much time in therapy that yesterday I decided that we would do none. He would get to have a day to just be a kid. No Mommy standing there trying to get him to say words, no using his toys for motivation to do something, just playing. He didn't have to ask to get up into his highchair, I just put him there when he wanted. He didn't have to say "up" to be held, I just held him. He didn't have to say "drink" when he wanted his cup, he just got it. It was a completely therapy-free day.

As far as therapy goes, I would say that, by far, his favorite motivator is bubbles. He loves them. They calm him down, yet at the same time, we can use them to get a few words out of him. Mostly "bubbles", "more", and the occasional "please".

But not yesterday. We filled up the bubble blower, turned it on, and went to town! Henry loved every minute of it! All in all I would say that it was probably one of the happiest hours that he has had in a while. His smile was almost as big as his happy squeals........That's enough to melt this Mama's heart.

Wednesday, June 2, 2010

Well, Hi there

A lot of you already know me, for those that don't, just call me mama. That would be the name that I recognize the most. I may also answer to Tiff on the rare occasion that I remember who I am. I'm using this blog for my son, Henry.

You see, Henry was recently diagnosed with Autism Spectrum Disorder. According to the evaluators, he is considered "moderate to severe" on the spectrum. He was also diagnosed with a host of other problems, but those are issues that, in general, go back to the Autism. I had known in the back of my mind for a long time that Henry was Autistic, yet when that diagnosis was spoken aloud by a medical professional, my whole world fell apart for a few days. After wallowing in my own little tidal pool of self-pity for a few weeks, I decided that it was time for me to do something. It is time for me to be strong for my son. Time to be his voice until he finds his own. Time for me to stick up for him and every other child that needs it, so that they aren't teased anymore. Time for me to teach acceptance.

Yet, I've noticed in family members that the words "He's Autistic" are being said a lot. This is what I want, more than anything else that I've listed, to put an end to. Yes...he is Autistic, but if he could say anything right now I'm sure it would be "I'm Still Henry" . I guess it goes hand in hand with acceptance. I don't feel the need for everyone to know that he is autistic. I'm sure he LOVES being Henry because he is bright, intelligent, fun, happy, hilarious, and one of the best kids I've ever known...meltdowns and all. This is the place for people to see that Autistic children are still children. They still need love, not because you feel sorry for them, but because you truly love them. Love them like you would any other child, just know (without mention) that it may not always be generated back in the way that you would like. Sometimes I hug my son only to have him push me away, but I know that he loves me. He just shows it differently and sometimes not often at all.

I like to think that in Henry's mind he is saying "Just play with me. Just be my friend. Just love me." I want people to look PAST the Autism and see that I have one of the sweetest children matter what his diagnosis is.