Saturday, May 9, 2009


A couple days ago I had one of those 'grieving' experiences that come to parents of kids with special needs from time to time. I guess many of you can relate to what I'm saying: when you first receive a child's diagnosis--like when I found out our oldest son is on the autistic spectrum--there is a very definite grieving time (sadness, anger, denial, etc) and then life just kind of evens out and you go along fairly reasonably for awhile and then something comes up and it's just like another kick in the gut. Anyone else experience this?

Well, this time had to do with Caleb who of course has Down syndrome. I have been sooooo tickled with his progress (AND really wanting to brag about it, too) He's enjoyed playing with scissors for quite awhile--just most snipping along the edges of pages--but I was impressed when several weeks ago in Sunday School he actually cut the 4 figures (Jesus, Lazarus, Mary, Martha, I think it was) into 4 separate pieces. No he did not cut straight on the line but he did cut the paper from end to end and he didn't cut anyone in half. With jumping he's gone from bouncing on the trampoline to being able to jump repeatedly on a level surface to even trying to jump off a small incline (he fell on his bum the first time so he's been scared to try it again without holding someone's hand) With praying before meals he can do the whole thing himself: "Thank you . . . Jesus . . . food . . . amen." And his speech and language have just been blossoming--he's putting the ending consonant on several words (like "I did it!"), he's stringing words together, he's labeling things spontaneously rather than just copying. He can trot (he doesn't really run yet) the length of the gym without tripping. I am just so proud of him.

Then Thursday I took him to his first T-ball practice and was hit in the face by another side of reality. Though I often feel like Caleb operates at about a 2 year old level I had forgotten how much more advanced 'typical' 4 and 5 year-olds are. Part of me thinks 'surely there is some mistake-- these kids must be 1st graders'--they're so tall, coordinated, can run and throw, know where the bases are . . . they seem way more advanced than when my other kids played T-ball. Caleb really enjoyed batting the ball but was pretty disgusted at the idea of having to run to 1st base and totally uninterested in running any further, though he did with the coach holding his hand. When practicing outfield, he'd stand in his place awhile and then just walk toward me. I know much of this will improve since he has basically NO baseball experience at all--barely even watching any games, let alone participating. I know he will gain from being around typical kids.

But part of me just wants to grab him and take him home where he is safe and protected and celebrated--rather than so obviously different.

Just being honest.


MamaPoRuski said...

Happy Mother's Day my friend. May the sunshine and God's grace and peace be yours! HUGS!

Hi~I'm Alysha said...

Joy I love your honesty & I get it :) My Eli is only 2. At home he's celebrated daily for all his wonderful accomplishements and I honestly am not aware of his being behind..until..well, he has a cousin who is only 3 weeks older then him and when we have family gatherings THE WHOLE FAMILY likes to point out all that my Eli isn't doing yet compared to his cousin. The questions come like "how's he doing?" as if he's suffering some type of disease. My heart breaks and most times I end up sitting inside the house "protecting" my little guy from the looky-loos who just don't get how awesome he is. Bittersweet for sure. Glad we have a great God to go to with our hurts :) So here's to you...a great mamam! Happy Mothers Day!!

Mandy said...

Joy - right here feeling the same pain. I KNOW in my heart that God gave Bryce and Alex to us not just for me. There are so many lessons that these boys will teach but man it just bites at times. Hearing others laugh or make ignorant comments is just like someone is ripping my heart out. SOMEDAY everyone will get it - I just keep thanking God that he let me in on his secret a little earlier :)

Carson's Mom said...

I totally do understand- I think we all do have those moments. Thankfully the good times far outweight those painful ones and you are right, life just goes on. It sounds like Caleb is doing very well!


Alice said...

Joy, Thank you for your honesty. I was embarassed and ashamed to admit that I was devastated and depressed for months when I learned that my 2 oldest children have learning disabilities. Before that, I was sure they would eventually "get it" and catch up. I was floored to discover that in some areas they might not. It was not the way I had planned. It was definitely not the way I wanted it to be! At first I blamed myself because I homeschooled them. Gradually, I realized that the problems would have been there anyway. They are still the same wonderful kids they always were. They both have great attitudes and work VERY hard to overcome their difficulties. Still, when I see my daughter trying to send an email to a friend with almost every word misspelled, I cringe and sometimes let it get to me....again.
Thanks for bragging on Caleb! I loved hearing all the progress he has made. I can't wait to start bragging on Andreas!

Rich, Andrea, Reece & Owen said...

Oh Joy....I feel this every day with Reece. Last summer he played in a 3/4 year old tee ball league with our youngest son, Owen. And even the 3 and 4 year olds were better able to stand still and know what to do. It was so sad, but I just hooped and hollered for Reece, and sometimes had to run the bases with him riding piggy back just so he'd make it home. But the fact that he is included to play is the most important thing for me.

Arizona mom to eight said...

Joy, I experience this from time to time, Meghan plays with a typical little girl, and the difference between the two is so vast. I am like you, I celebrate everything all our little girls CAN do, but when they are next to their same age peers, the delays are profound.