Thursday, June 2, 2011

Identical Twins with Down Syndrome... Keeping it Real...

I thank God daily for doubly blessing Tom and I with these two beautiful, amazing, intelligent 5 year old identical twin boys he entrusted to us to raise in his sight.  I express my love for these boys to all who will listen to me babble on and on about them as I often do.. I always try so hard to turn negative comments into positives.  When someone tells me they are sorry, as so many often do, I tell them there is nothing to be sorry for, I tell them that the odds of having identical twins both with Down Syndrome and PDD Autism are so rare that we obviously feel "chosen" to do this.  When I talk to someone for the first time and tell them my boys have DS and Autism the reply I most often hear is "awwwwww".   I can totally see why someone who had never had the opportunity to live with a person with Down Syndrome to think and speak like this.

Here is my Boo Hoo..... My boys are five, they are non-verbal.  Right now as I type they are wanting something that I cannot figure out.  Since they cannot communicate to me they scratch and bite until I figure it out or redirect them to something else.  Caleb currently had a bruise the size of a silver dollar on his forehead from head banging when he is unable to communicate with me.  Tom and I are so scratched up from constant tugging of our face to look at them to figure out what they want.  My boys are five, they are still in diapers with no indication that they do not like messing in their diapers.  When they get into the tub and urinate they do not know what the yellow stuff is that is making a fun fountain to play with... 

*scratching me again*

My boys are five, they often hum and twirl socks or dangle toys while intently staring at them.  Until I had my boys I had never heard the word stimming, now that has become a daily routine.

*scratching me again*


My boys are five, somedays I wonder when I am going to find the right instructional book explaining Parenting twins with Down Syndrome 101, with the second edition adding in the Autism part.  As Caleb walks back over to me banging his head off all the furniture and of course, scratching me..

ok back from getting him a sippy cup. Where was I? Oh, my boys are five.  In five years I have learned so much about myself.  I have learned that I have taken so much for granted in life.  I have learned that I go and go and go and need to learn to slow down and smell the roses.  I have learned that I have ALOT more to learn in life.  I have learned that I did not treat all people as I would want to be treated myself.  I have learned that going up and greeting and/or hugging the least visually appealing person in a hospital waiting room will put a smile on that persons face for a week.  I have learned that the struggles I feel I am dealing with are nothing compared to others.  I have learned that everyones problem is the worst problem ever, until I really sat back and saw some people dealing with things that I never could deal with myself.  It was at that point, that I discovered THAT is how people look at me.  People see me struggling to hang on to one boy while the other throws a temper tantrum in the middle of a store floor.  People see me feeding both boys and myself when we go out to a restaurant to eat.  People see me going out in the public usually always with a wrap around worker (or two) handling the twins so I can accomplish my grocery shopping.  People see me sitting in the van at a baseball game watching Elijah from the parking lot so the twins can sit and watch a movie to allow me to watch the game.  People see me carrying one twin in each arm down a flight of stairs to their preschool room to save time until they master going down stairs themselves.  People see me not being able to attend things because I know that the surrounding will be overstimulating to the boys and they may scratch behind their ears until they bleed or bang their fists on their head. 

Why am I typing this post?  Because when I talk to my friends and family members I always make it seem as though raising these boys is just like raising my other three children.  When I talk to friends and family I only talk about the amazing things they are doing..  ( and that is ALOT ) but there are also things going on behind the scenes that often times brings my spirits down a little bit.  The boys have begun bolting from us, they have begun pulling things off the counters and taking things out of drawers.. Safety is a huge issue right now and its stressful to me feeling like I can't control everything and they may get hurt.  Elijah came in the house yesterday and left the door open... Caleb found the open door and ~whoosh~ he was gone, crossed the street and went to see Grandma and Papa.. How terribly frightening especially as we had a dog killed on the road last week.  Its an eye opener.  I have been thanking God that the warning came in the form of a dog losing her life and not my child.  Today we had someone come and give us a quote for fence for our yard... I am hoping that I can find some peace of mind soon so that we may all enjoy our summer instead of worry our way through it.

Thanks for reading and if you read this far you sure got an eye full.  I feel better now..  Any words of wisdom or been there done that talk appreciated :)

10 comments:

Casey&Connor'sMommy said...

Stacy-

I have never taken the time to tell you what an inspiration you are to me. I look at these posts that are literally GLOWING with pride about Caleb and Isaac and my heart smiles. I am only 18 months in this journey but I know well the pride a mother feels when he little princes masters something new.

That said, this post spoke more to me than most of your others. There are some BIG challenges on this road. I often wonder when Casey and Connor will learn to use a spoon or figure out how to stand independently. I worry over their safety and I wonder if I am doing enough to make sure that they are successful in life. This is a big job. You handle it with grace and compassion and you may not realize it but you are changing lives- mine included. Thank you for sharing these thoughts- it's good to know that the occasional frustrations I feel are normal.

You are an excellent mother.

=Meghan

Missy said...

I don't have a child with Down Syndrome but I do have twins and another child with a genetic syndrome, 16p11.2 duplication AND autism. There really should be a handbook for "us" moms that fit into more than one category. I have to tell you that your boys are beautiful!

Anonymous said...

Hello, I just found your site, What an inspiration you are. I am a special education teacher and have loved reading some of the stories on here. I was wondering have you tried a communication device for the boys? Either a vantage lite or springboard lite? I have worked with students in the past, this allowes them to be able to communicate.

Jodie

Stacy said...

Thank you for all the nice comments here. Meghan <3, Missy thank you for noticing how beautiful my boys are :), and Jodie, as of right now we have not tried a communication device. We have only been using sign, but they are far beyond capable of communicating what they are able to sign. Our speech therapist is contacting a DynaVox rep to come and evaluate the boys soon. I never heard of either of the recommended devices you mentioned. I will look into them.. Thanks for suggestion!!!!!

ginabad said...

Hi Stacy, while my kids are not exactly like yours, I have an 8yo with Down syndrome and a 5yo with Autism. I've walked that road of not being potty trained at 5 (little one still isn't), of not being able to communicate (she also can't speak), of the frustration, the pain, the "barely holding on". What is remarkable is that you may not realize it, but your post here is challenging and it made me smile too. I believe that we get to this place in life where we need to unload our burden a bit before we can go on. It'll get better - and worse too, but you're doing the best you can, I can see that. peace to you,
gina b
mom-blog

Anonymous said...

The ones that I recomend are similiar to what dynovox has to offer but a different company. Glad to hear they are going to evaluate them. Jodie

Mandy said...

I so understand where you are coming from with the safety issue....our son (almost 5 with ds) bolts to the highway if he has a second of freedom :( My other son (6 ds) is a stop, drop, flopper - the best of both worlds I guess :) PLEASE do tell if you find a trick to the potty training. I keep thinking "someday" but still not a flicker of hope yet!

Amy said...

OK, somehow I stumbled upon your blog---LOVE YOUR POST!! Many blog writers (like myself) tend to write about the fun stuff that happens when in reality it can be tough--very, very tough!! Last year we bought her a Dynavox ($10000--thank God for insurance) and because she does communicate, with 75% understanding, I rarely get her dynavox out. But, maybe your boys will use it everyday. They are heavy/overwhelming but seems to grow as the child grows. A dynavox can be used as a regular computer with WiFi but I haven't figured that out yet. Anyway, thanks for being human and blogging about it! Whether your a mother to twins/single typical/or not so typical being a parent is TOUGH!! And yes, I wish all of my kids came with a handbook---especially my 15year old daughter! :) I'll be praying for you when my 8yr old sits and bits herself---not because I don't understand her but because she's stubborn!

Anonymous said...

I work for the Ross Co. Board of DD and was doing some research and ran across your blog. Just wanted to take the time to thank you for sharing and to encourage you to continue you write!

Anonymous said...

I have identical twins with ds born on dec. 23,2012 and my journey has just started I luv seenin my boys home finally after havin them in the nicu for two months I luv reading stories on twins with ds bcuz it make me feel lik I'm not the only one out there and god gives special bbys to special ppl . I'm new at this but I'm sure its goin to b ok thou at times I do feel a lyl down but I kno I can do this my boys r amazin and so r urs ...