Special.

We are in the midst of transition around our house.  Charlie will be three at the end of this summer and as every parent who has a child with special needs knows, the third birthday marks a big transition for their child.  It is the end of the birth to three early childhood intervention program and time to transition into the school district for services and education.  As we begin this transition, I’ve been reflecting on our journey during the last few years.  The choices we made.  Things we would do differently, decisions we were pleased with.  Hopefully these posts will help other families who are a few steps behind us in this journey.  And I welcome any words of encouragement or advice from parents who are further ahead on this path.

——————————————-

Special.

The word seems so benign.  Add another word behind it and it becomes fully loaded.

Special.  Needs.

As in Charlie has “special needs”.  Because he has Down syndrome.

Yet “special needs” isn’t a term that we use often around our house.  Of course Charlie is without a doubt special, but his needs seem no more demanding or special than his brothers.  Yes, he maintains a packed calendar filled with therapy appointments, music class and meetings with teachers, but each one of my boys has their own busy agendas.

To us Charlie is simply Charlie.  In the small world that includes our family and friends, life seems to go about smoothly with only the occasional bump here or there.  Charlie plays right alongside his peers.  Day to day he isn’t any more different or special.  Yet I wonder if that is just our mentality.  Is this the result of a decision we made early on; to raise Charlie the same way we would raise any of our children?  Are we being naive in thinking Charlie isn’t that different from his peers?

My biggest fear?  These early years are the “easy” part and the real challenges are waiting for us down the road.

I’m pretty realistic.  Down syndrome will always play a role in our lives.  But as time has gone by I’ve learned it isn’t as scary as it first was.  When Charlie was first born I would work myself into a panic, frightened about all of the unknowns the future held for our sweet boy.  {As if I have a crystal ball for Henry and William}.

Initially I was fearful of the unknown.  And as far as Down syndrome was concerned I knew nothing.  So I educated myself.  I poured over books, searched online, called special research centers and clinics, talked with other parents and scheduled appointment after appointment with any specialist that would see us.  After all, my sweet boy may have Down syndrome, but he was going to be the best darn little boy with Down syndrome ever.

Weeks and months passed by and while I read everything I could get my hands on, I realized that no amount of research was ever going to reveal all of the “unknowns” of Down syndrome, or relieve any fears I had about the future.  My best bet was to simply focus on my son.  To enroll him in the local therapy services available to us.  Acknowledging that the emotional cost of travel and choosing to separate our family would never outweigh the advantages of a Down syndrome clinic half way across the country offering cutting edge services.

So instead of racing from one specialist to the next, we focused on Charlie.  We still welcomed therapists into our home, but I know without a doubt the best learning was done while brothers played together, during a playdate with friends, or around the kitchen table at dinner.

I also had to take a step back and be realistic.  There are plenty of {strong} opinions about the “right” and “wrong” way to raise a child with Down syndrome.  Were we delaying speech by allowing Charlie to use a regular sippy cup and not the special “honey bear” that so many other families choose?  Were we damaging Charlie’s feet by using orthotics in his shoes?  Was is wrong to choose a healthy and balanced diet instead of expensive and controversial supplements?  And the list goes on.  {Though I do have to report so far so good –  Charlie seems to be able to master any cup or water bottle that comes his direction.  He walks {runs} pretty much everywhere.  And the kid is healthy as a horse.}

I’ve learned that in all reality raising Charlie is no different from Henry or William.  My “mommy instincts” are just as accurate for Charlie as they are for my “typical” children.  And I don’t think we were or are naive in our choices for Charlie – realistic is the word that comes to mind.  Obviously there is a place for each specialist, or clinic.  But the harsh truth is nothing will “fix” the Down syndrome in Charlie.  It’s literally who he is and I’m thankful that we came to that conclusion early on.

Instead, when it was time to place our bets, we put all of our chips in the family category believing a balanced family life would be the most powerful advantage we could give Charlie.  Because when all is said and done – when all of the therapists have come and gone, special sippy cups have been trashed, specialists have changed their theories – our family will be the one constant and solid foundation for each of our children.  “Special” or not.

Funny how it always comes back to balance, love and family doesn’t it?

Advertisements

9 thoughts on “Special.

  1. i’m not a DS Mom, but I have an Uncle with DS. He’s 30 now, couple years ahead of me. He just moved into a community home with other special needs guys. He was so excited for it, he invited my husband and I to come check out his place, he loves it, I’m kinda glad my grandparents didn’t push him to move out, but waited until he was ready. He’s also getting baptized next month, he made that decision on his own too, I can’t wait to attend one of the biggest moments in his life. All the best to you and your family.

  2. I could’ve written that post word for word! Can I steal it LOL! (I won’t). I fretted, read everything I could on Ds in the first few weeks and was overwhelmed at all the things that “could” happen, but might not. Instead, I focused on anthologies of families who came before me and were in love with their children and were doing great. This helped me put John Michael rightly where he belonged… just as another sib in a busy household of 4 kids. You’re right… JM’s best therapists are his sibs and the interactions they have, the outings we go on and the things we do around the dinner table. I have to be realistic as well. I think it partly comes down to the fact that Charlie and John Michael are healthy and maybe don’t have some of the challenges other kids do where they need to try the Honey Bear cup or they need better nutrition or whatever… It’s such an individual decision and I see how some of these things have helped our other little buddies with Ds. I can’t tell them to just let it all go. But for our family, I agree with your approach… that’s just what works for us and I’m so grateful for our little guy. Great post.

  3. I think the most challenging part of all this is finding a balance in our family. It sounds like you have that all figured out and I think that is very important.

    Our children with Ds are still individuals and how we raise our children is still very personal regardless. So your choices are based on what is best for your child, that is how I see it.

    It sounds like your family is thriving, that’s wonderful!

  4. Libby – Thanks for this post; I know it was written for me in so many ways! I agree with Erin, trying to find the balance for each family is the hardest part, but with any family (Ds or not)finding the balance is the hardest part!. I am looking forward to being able to look back when Parker is Charlie’s age and feel satisfied with where we are in that process!

  5. I am not a DS mom. I have a boy that is HOH (Hard of Hearing). This is pretty much the same approach I have taken with him. I want it all to be “the same” because in reality, they are the same, but for the hearing. I have, however, come to the realization that there are times that things will need to be different for him. For instance, my children all went to the same pre-k, except for Henry…he went to a deaf and hoh pre-k. Can I tell you how I hated that? But I knew it was going to be the best thing for him, and it was. I am sure there will be other things, too, and we will cross those bridges when we get to them. To be honest, I have learned that each of my children is different, and that no one approach is right for all of my children, hearing loss or not. When I look at it in those terms, I realize that trying to do everything the same for everyone would really not be best. Am I making any sense at all?!

    I guess what I’m saying is this: I love him the same, and from him I expect the same that I expect from my other children. It’s just that the path we travel may vary a little from child to child.

    Oh, and this is getting long-winded, but just real quick, we went against the advice of experts on a few occasions, because we just didn’t feel right in our guts. In the end we were right (at least I think we were!). No one can really decide for you what is right for you and your family. They can give you advice, but that is all it is. I think you are right to use your mommy instincts!

  6. Libby, this post is amazing!! I know exactly how you feel (or at least, I understand everything that you posted!) and couldn’t agree more that sometimes the best therapy is not one that is paid for. We have given up hunting down and chasing a therapist that seems to have big problems with making & keeping appointmens.

    We try to treat Ainsley like she is just one of the kiddos. And we try to remember that we don’t always pay attention to what the “experts” are recommending for the other 2, so why get so hung up on it for Ainsley?

    As always, thank you for sharing!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s