For years Kurt and I have known that Carter has special needs. When I stayed home full time I worked with him for hours each day to try and get him to “catch up”. I am so thankful for the time I was able to be home with my children, because of that time I was able to witness firsthand the miracles that they both are. I worked hard and homeschooled Carter in a little preschool Kurt and I made him. It had a whiteboard, corkboard, and lessons. I worked for 1-2 hours each night to prepare the lessons; the lessons themselves were only about 30-45 minutes. Because I knew Carter so well I was able to REALLY work with him and use his strengths to his advantage. Kurt was skeptic at first, but after the progress Carter made Kurt believed (as I did) that home school would be the best option for our children. At 2 years old Carter couldn’t say 20 words. With speech therapy (1x a week for 20 minutes, plus homework- usually in the form of practicing sounds) and our little home school, Carter was speaking in phrases within 6 months. Full sentences 6 months after that. Carter has been READING since he was 2 ½, he could read most of “Happy Birthday Thomas!” by the time he was 3 (he enjoys memorizing words so he can read them by himself). A few months ago I greeted Carter by saying, “good morning, Superman!” because his night shirt had an S on it. Carter looked at me, stomped his foot, and said, “I am NOT SuperNan, my name is CARTER!” (Yes, he says SuperNan). To Kurt and me this is amazing. We look at Carter and he is talking to us!!! It is astounding and we are thrilled.
I am betting most people reading this had no idea that we had a child with special needs. Why? It is not because we are ashamed of our son. No. Not at all. We don’t talk about it because Carter's language delay and disability is NOT what defines him. Carter is a happy, playful, considerate, sweet, and caring little boy- THESE traits define him. Carter likes rules and loves fairness and justice (1st child, go figure). Carter’s favorite toys are Thomas trains. Carter’s favorite movie is The Princess and the Frog. Carter doesn’t like to eat veggies, he would rather eat pizza. Carter’s favorite animal is the elephant and he is scared of the whooshing sound busses make when they drive away. He sounds like a normal little boy, right? That is because he is. Carter doesn’t talk a lot. Carter has a very hard time understanding word commands that are very long. Carter has an auditory processing disorder. Carter functions DISPITE his disability.
Like every parent, Kurt and I were (and are) faced with choices. One choice we had to make was what to DO with the information about Carter’s disability. Parents with special needs children know what I am talking about: there is something “wrong” with your child- you just know it… Or, maybe someone pointed something out to you, so you got it checked out just to crush all doubt in your head. Whatever the path, you end up sitting in front of some expert. Someone tells you the news… you go part deaf (perhaps a mental block) and all you hear is blah blah special, blah blah disorder, blah blah disabled… and it happens: POOF, you are now the parent of a special needs child. For some people the news is freeing: their fears aren’t just fears- they are real issues, and now they can begin to deal with them. For some the news is a blessing, finally they will have the resources and help their child needs. For us, it was devastating. I cried for hours. I grabbed the keys and left Carter with Kurt. I think it was about 7 hours later when I showed back up at home. I walked in, looked at Kurt, and said, “Screw this.”
It was that moment that Kurt and I decided that Carter’s disorder would NOT define him. We would NOT lose sight of who he is and certainly wouldn’t allow anyone to treat him any differently than they would any other kid (exception being they may have to repeat themselves a few times). We would have to work harder, oh yes, that we knew- but there was NO DAMN WAY we would allow our son to get less than we would have given him without the disorder. More than that, we weren’t going to allow Carter to allow himself to work any less hard than he otherwise would have. Now, before I get angry posts for this, please let me explain: this is how WE reacted. There is NO CORRECT WAY to deal with the huge blow that comes when your child is diagnosed with any type of disability. This is simply how we choose to see it. Becky said it best when she said, “Yes, you [Carter] are going to have to work harder, but you CAN do anything!” And THAT is how we treated (and continue to treat) this news about Carter, and THAT is why we do not introduce Carter by saying, “Hi there, this is Carter, he is disabled. Please, excuse his horrible behavior; the poor kid has a disorder.” What you WILL hear me say is, “CARTER JEFFERSON LYLE! Don’t you DARE stick your tongue out at me- go clean your room this instant!!!!!”
Yes, we have dealt with this for some years now. Carter has good days and bad, but so does every other 4 year old. Carter tries to get away with more now, but that is because his daycare feels that it is easier to ignore him then it is to discipline someone who needs their punishment repeated 4 times. Does he act out at home? Rarely. Why? Because we don’t put up with any of his crap (most stay at home moms can relate… you give the kids an inch and they will take a mile, so it’s best to just be consistent all the time). So… Carter is smart enough to know he can manipulate people based on the situation- to me that’s not a sign of a life-altering disability, but the sign of a 4 year old trying to get what he wants.
The reason I bring this up now is because Harrison was just diagnosed with speech delays, after which we took him for a hearing test, and he didn’t do well. Harrison did not score in the normal range for children, but he did score within normal range of adults, so he currently does not need a hearing aid- it is a “slight hearing loss”. The audiologist did many different tests; they all showed the same thing. Because of Harrison’s language delay, he is now also classified as disabled. Will we allow this to define our little boy? NO WAY. Harrison is just like any other kid: he hates nap time and loves hugs. He adores food (just about any kind) and the only thing he loves more than food is Lightning McQueen. Harrison enjoys seeing movies and has a crush on his preschool teacher, Ms. Jen. Harrison’s favorite color is red. Harrison can frequently be caught stealing gum from my book bag. When Harrison grows up he says he wants to be a teacher. He can do all that, and we will help him- we all just have to work harder (and speak louder).
Kurt and I want to thank everyone who has helped us with the boys over the years. They really are wonderful kids; just about everyone would agree. Kurt and I continue to believe that this does not have to be the end of our dreams for them… but at the same time, we won’t lie and say it isn’t heartbreaking to hear the neighbor kids (who are younger than our boys) say more in 3 minutes than our boys will say in a whole day. We are thrilled with the progress our boys have made, but we eagerly wait for the day that we can have a full conversation with them- we are dying to know what they think about things- anything, everything! We are blessed- the delays and disorders our children have are not serious enough to completely take over their little lives, and for that we are eternally thankful- in fact, depending on the expert you talk to- this may all be a distant memory in just a few years!!!!
I just wanted to share this with anyone who felt prompted to read it. There is nothing in the world more precious than one’s child- and ours are no exception. I am not eloquent enough to put this a better way, so here is how we feel that living with special needs children is best described:
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
**before I forget... not to be rude, but if anyone comments to us that we should talk to our kids more, just describe what we are doing more, read to them more, etc... I will slap you, and obviously you dont know me very well to ever be able to assume that I wouldnt have already been doing that since they were born (yeah, I read the entire Harry Potter AND Narnia series to Carter AS A NEWBORN because I thought it would help his language skills and Harrison sat in on the home school and knows all his letters, shapes, colors, animals, can read about 20 words, can count to 13 and is currently 3 years old). Flashcards, worksheets, specially designed dvds, therapy, preschool... yeah, we tried the basics BEFORE all the extras, so please, no stoopid suggestions.
**Taken from January 2010 Facebook notes by Mellissa.