Monday, August 11, 2008

Labels, and His Future

Most labels that doctors and specialists give special needs children come with specific lists of what to expect and what the future holds. Don’t believe them.
What the future holds is not something that can be predetermined or preset. Each individual is different.
What the future holds is based upon the opportunities that are presented to the individual.

I strongly believe with every ounce of my being that the above statement is true. Had we believed what we read when we first found out about Daniel's "problems", had we given up right then and there and accepted what we read, what people told us, what the world says. Daniel would not be doing the things he is doing today. As little as some people think these accomplishments are, they are huge. Daniel is a fighter, and funny enough I've come to learn that I am a fighter and his dad is a fighter. As much as we don't like being aggressive, or harsh, or b*tchy, yelling or whatever people think we are. We are this way because we are fighting to give Daniel everything that we possibly can.

Granted I have probably burned some bridges that I wish I hadn't along the way, and for that I am sorry. We lash out at people when we are hurt. Let me rephrase that. I lash out at people when I am hurt, scared, confused. I tend to pull away from people who are willing to help, who want to help because I feel like I am a charity case. I don't want any ones pity, I don't want anyone feeling sorry that Daniel has issues. I wouldn't change a thing with Daniel. I love Daniel more than life itself. I have a special bond with Daniel that most parents don;t get to experience with their typical children. I can communicate with my son without words, without hearing his voice. I know, I can feel what he wants, and what he needs. Sorry, I got off topic there. At the beginning I pushed people away because I didn't want to answer questions, I didn't want to have to explain. Why? because I didn't know the answers (I still don't) I didn't know what the future held (I still don't, I can't even think about the future, all I think about is the day and how we'll make it through today.) I didn't like having to see other children, who didn't have issues. I didn't want to see typical children and them succeeding in everything that they did. I didn't want to hear how well they were doing, nor see it. (I still don't but its getting better). It is very hard to see a child younger that your child doing things your child CAN'T do. It is very hard, although you are really happy that child is succeeding, you secretly wish your child could. Its a heartbreak every time. So you pull yourself away from those situations and don't put yourself out there to get hurt. Although no one is trying to hurt you purposefully, it still does. People don't understand. They can't unless they are walking in your shoes. Your whole life/dreams are now changed, you might not have wanted it to, you didn't ask for it to be this way. But guess is. And we can say "oh it's OK we're handling it, things are fine" and we are handling it. But please, don't think that anyone ever totally accepts it. Yes I understand we have a special needs child, and I love him with all my heart, and I know that he will have his issues, but do I wish that he didn't? Hell yes. Do I see other 3 years old walking and running, and wish that Daniel was doing that? Yes. Do I see other 3 year old little boys talking to their mommas and telling them they love them and wish that I could hear those words from Daniel? yes you better believe it.

Anyways, back to the topic, "what his future holds". Daniel is where he is today because of countless hours of physical therapy, occupational therapy, speech/augmentative therapy, feeding therapy. And he is doing well. But I have this nagging feeling that there is something more that should be done. As many hours as Daniel has put into this therapies, I have spent researching alternative therapies, researched different techniques, asked thousands of questions to numerous people, read books, read research papers and then had to look up the words to see exactly what they were talking about! We had to learn things we never even heard of before. Ask me 3 years ago what augmentative was and I would have shrugged my shoulders. Ask me what a Bilateral Perisylvian Polymicrogyria was and I would have looked at you with a blank stare, glazed over eyes and said "huh?"

With all this research, I think that Daniel is unique in what therapies he needs. There aren't many children out there that have exactly what Daniel has. (BPP, epilepsy, spastic quad CP, feeding issues, apraxia, global developmental delays, etc.) So I don't think there is just one type of therapy that will work for him. I do believe that the traditional therapies that he has been going to for the past 2 1/2 yrs are helping him. BUT, I follow it with a "but" because again, I think he needs more. The "more" that I think he needs is at the Institute of Achievement for Human Potential. And the "more" I think he needs is also the ABR therapy in Canada. There are numerous reasons why I believe these two types of therapy along with his traditional therapy are needed. Currently we are treating Daniel's arms, legs and body, trying to make them work and heal. But we aren't "healing" his original problem. We aren't "healing" his brain. That is where the IAHP comes into play. I want to attend the one week training course of How to help your brain injured child. This trains ME on how to help Daniel reach his fullest potential. This doesn't require Daniel to go outside the home, this doesn't require someone else to attempt to help my child. This requires ME to learn what I can do, and what I need and want to do because I believe so strongly that there is more to Daniel that what the specialist believe. I don't need years and years of training, to look at reports, MRI, CAT scans, IQ tests, to tell me what Daniel is capable of. All I have to do is look into his eyes. I can see in his eyes that he is aware, that he is there. The eyes tell it all.

What the future holds is based upon the opportunities that are presented to the individual
and we, as Daniel's parents intend to give him every opportunity we can. So knowing that, please accept apologies from us/me if you think we are harsh, or rude, or mean spirited. We are not. I am not. I am trying to cope, and fight for sanity in a very scary world that I know not much about, and I am trying to learn as I go, keep my head above water,maintain some normalcy, and give my son every opportunity that I can.

So, please follow up in the next couple of month because we will be going to the IAHP, and we will be selling off whatever we need to sell to be able to go! :) (you think I'm joking, I am not!)
If anyone is a crafty person and wants to buy a really kick ass sewing machine, I have one that is less that a year old. Lonnie has some guitars he is selling, and oh yeah, we're thinking about downgrading to the large cardboard box for a house, so if you're looking and in Michigan! LOL


Anonymous said...

awww what a good picture of daniel! xoxoxo

Melissa said...

You're doing a great job Melanie! I know you will succeed in giving Daniel every opportunity in life because you are such an amazing mother. :)

Justinich Family said...

I reacted the same way you did in the beginning, staying away from typical kids and migrating more towards others who has special needs and understood what I was going through.

I am going to research the first therapy that you were talking about, I need to do some more for Evan and that sounds like a great option.

Jacolyn said...

You go girl!!! Love the sweet photo of Daniel!!!

Mamá Terapeuta said...

This is the way to go!!! What a great perspective!! I think you are absolutly right... Well, we do ABR and are totally happy about it. I think the most important thing is to do what you, as a parent, feel its right. We are the only ones who truly know our child!!!!!

I love that red line!!! Totaly true.

Bird said...

I feel the exact same way. I tried contacting IHP, but never got a response, so I decided to just start a home program. Charlie adores the reading and I'm getting revved up to start the math. I can't wait to hear what you are going to learn when you go--you must share!

We are also heading off to Canada this October. Charlie's brain is growing and he's taking so much in--I just need to give his body a chance.