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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Thursday, October 1, 2009

31 for 21


We did this last year and are determined to try again this year, I cannot do it on all three blogs, so we will use our family blog instead of this one and Kara's and Amanda's LOL.

Every October I think about what it means for our girls to have Down syndrome in America. Now most well meaning folks say the same thing to us when they see the girls, can you guess what that is? "Oh, you are so lucky, all Downs kids are so sweet, so loving" and "You must be special people to have three" I just smile and say thanks and move on...I have given up trying to explain anything to them. Meghan has always been shy, I share that with her, I was a terribly shy child myself. My dearest friend was over a few weeks ago and Meghan hugged her for the first time, now B has been here quite a few times, but Meghan has always been so reticent around her, not sure what is going on in her head, but she gifted B with a hug and it made B so happy. It isn’t because Meghan dislikes a person; she just prefers to assess them before warming up to them.

Now Kara, our jolly and rascally little scamp, she will jump on all our visitors and say hi, she is learning that not everyone appreciates it and is doing it less. Amanda climbs in everyone’s lap, but she drops her head, grinds her teeth, and shows distress when she does, not sure what is going on in her little head, maybe she thinks she has to say hello?
So many people also say that they could never do what we do; that puzzles me until I think about what we do that other parents do not, that for almost 9 years our lives have been about therapies and developmental milestones. That is normal for us, but most parents take their children’s development for granted, I know I did with our first 5 children, typical kids roll over, scoot, crawl, cruise, and walk, and talk on their own and on a good timetable. With Meghan and now Kara and Amanda, we had to show them how to do each thing and then do it over and over and over until their bodies and minds learned to do it on their own. It took work from her (them) and us, and it took time away from our other children, but truly not an excessive amount of time, and often they would help us and do the therapy exercises with their sister while they played with her! Of course they are not here to do that with their two new sisters now. Trying to find a balance between Meghan's needs and the needs of our typical children has always been a struggle.

Besides our three little girls, we have their big sister Julia at home, our sons are grown and on their own. Julia is pretty independent, almost 17, and getting ready to get her license and finally get to drive her brothers (now hers) Camaro. I think that having a sister that needed so much attention was hard for her 8 years ago; it would be, she used to be the only girl and then had a sister that took her parents to doctor’s appointments sometimes 5 times a week. Now she has three sisters who have lots going on. When Meghan was a baby, Julia used to help with her therapies, she colored pictures for the therapists to use for other kids, she was a huge help. Today she is in a musical theater group that includes 8 young men and women with Down syndrome. I think being with these young adults and getting to know them has shown Julia that her sisters can and will have futures too. Sometimes we can get mired down in today and fail to see what lies ahead. It has also been a wonderful thing for us to witness, they love being in the productions and the other students are very helpful and kind to them, Julia says, very protective of them.

We have taken all there little girls to Julia’s performances, and the other children’s parents are also in attendance, but try as we might, we cannot get them to talk to us. There is a new young man in the group and we were walking behind him and his parents to our cars, they saw us but did not engage us in conversation, I admit I was befuddled; I ache to talk to other parents, why would they do that to us? Surely they see us with our three daughters; I just cannot understand their reticence. Does something happen after puberty in our kids that closes off parents to one another?

Today will be a busy one with dentist’s appointments for Amanda and Meghan. I hope they can see Amanda; she has 5 cold sores on her mouth right now. Poor sweetheart slept with us last night she was so miserable. She slept well though, hope it is not a trend; we already have Meghan sleeping with us.

Yes, we advocate the family bed, but Kara and Amanda rock themselves to sleep, even after falling asleep first and being placed in bed, they pop back up and rock for a few minutes, or in Kara’s case, sometimes much longer. No way can a person sleep with that going on.
I believed the rocking would diminish over time, but I am finding out that habits a child acquired and did for 3 years are pretty well ingrained in their coping skills. Their so called orphanage behaviors are hard wired. Sometimes it feels like we failed somehow because being in a loving home did not help them overcome this. Then I think about other bad habits some of us have, nail biting, chewing on pencils, chewing on hair, etc, and I guess I have to cut them some slack? After decades of living with one nail biter, I can tell you, I do not think he will ever stop doing it. I have bad habits of my own too…

I am worried about Amanda though, she is not eating very much because her mouth hurts, but her pediatrician says it is a virus, he cannot help her, for us to treat the symptoms, and doesn't that make you want to scream? All she can eat is yogurt right now; anything with even a tiny bit of acidity hurts her mouth. She managed peas and brown rice yesterday. Amanda is itty bitty; she does not have the weight to spare. It makes Tom and I so sad to see her so miserable. We were up with her at 1:30 this morning, she was moaning and so distraught and we were zombie like trying to console her. We gave her ibuprofen; we held her and rocked her to sleep. She seems a bit better this morning, those small steps are important. We would appreciate prayers for her recovery.

We have been working on getting Kara a communication device, the request has been sent in to DD, hopefully long term care will cover the cost, I doubt AETNA will, but you never know. We are waiting to hear when the specialist will come and evaluate her. Yesterday the girls got in their wading pool for a short time, it is still hot here, but the day went from hot to windy and cooler very quickly. Amanda was shivering in no time, Meghan jumped out and Kara was the last one to exit. She was in there saying ba ba ba ba, ha ha ha, da da da da, but get her out, and she says nothing at all. I suppose keeping her in water all day is not an option, but it does illustrate that she has some sensory issues. That is another evaluation we are waiting on for both Kara and Amanda.

Time for breakfast for all and then homeschooling, I need to check school emails as well, we are having an issue with her Odyssey Math program. See you tomorrow.

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