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Special needs

Bitter/Sweat Birthday

The twins turned 18 on the 28th of July. Yesterday, we celebrated their birthday with a small family gathering. Birthdays are always a bit emotional, both happy and sad at the same time. For typical kids, families celebrate the anniversary of the birth of a child and it is a time to marvel at how much a child has grown and developed. For the twins – and many other children with special needs – the birth date was not a happy time, but a very traumatic and scary time. When the twins were born three and a half months too soon we didn’t even know if they would live or die. At that time we were only thinking in black and white terms, would they live or die. Of course, few things in life are that simple. As we’ve learned, survival was only the first of many challenges we would face.

The 18th birthday is a big milestone for all kids; the boys are now technically/legally adults. We been busy with mountains of paperwork including guardianship, SSI, DDS, ACF to name just a few of the alphabet soup services we need to deal with. For kids with special needs, moving from children’s services into the adult system is a lot of work and red tape, and we have three kids transitioning at the same time. Anthony also turned 18 on May 1st. All three will remain in public school until their 22nd birthday, then we’ll have our next big transition. But these transitions are very different from typical kids; graduating from high school, going off to college, and hopefully becoming independent, productive adults. At least we will never have to worry about “empty nest” syndrome. The biggest worry for us and most parents of kids with disabilities is “what will happen to my child when I’m gone?” syndrome.

On the bright side, the twins are doing amazingly well in spite of their challenges. They are happy, healthy kids who love life. And really, what is more important than health and happiness?

Here is a little birthday party video:


In The News

Here is a scan from this weeks Grafton News. Hard to believe the twins are 16 years old. I think they were about 18 months old in this photo.

16 years and we are still wondering what their full potentials will be. I guess that is true for all parents, although the expectations and possibilities are quite different. That said, parents of children with special needs usually learn early on that as long as their children are healthy and happy, the rest is just icing on the birthday cake.

16 years ago the twins were born on July 28, 1993; three and a half months too soon. Their due date was October 31, so more of a trick than a treat for their parents. But still amazing how far they have come. Had they been born just 10 years earlier, they would have been a miscarriage, so I suppose whatever they accomplish in their lives is just more frosting. But for myself, I would have missed out on so many valuable lessons. My life would be very different now and quite dull, I’m sure.

We took the twins to Six Flags for their birthday. Cousin Nick came along too and we had a fun time. Happy Birthday Eric and Aaron!

Six Flags New England
Six Flags New England

Welcome to Beirut

Those of us who have children with special needs inevitably receive a copy of “Welcome to Holland” early on in our journey from some well-meaning person. I’m sure the vast majority of friends and family who read this blog know it well, so I’m not going to post it here, but here is a link if you haven’t read the Holland this piece:

When I first read Welcome to Holland – when the twins were babies – I did find it helpful. But now that I’m a slightly jaded veteran, I prefer the lesser known, somewhat sarcastic version called “Welcome to Beirut”. Welcome to Beirut is a response to Welcome to Holland written by Susan Rzucidlo who’s son has Autism. I think the Beirut version is a more realistic description of what it is like to have a child with a disability.

“Welcome to Beirut”
by Susan F. Rzucidlo

“I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this..”

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM”!

There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping “Life long diagnosis” and “Neurologically impaired”. Bullets whiz by “refrigerator mother” ” A good smack is all HE needs to straighten up”. Your adrenaline races as the clock ticks away your child’s chances for “recovery”. You sure as heck didn’t sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life, well you tried, well, you weren’t caught too often. Hey! you’ve never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She’ll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You’re insurance company refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn’t sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful. Don’t get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.