Sewing For Special Needs

You may wonder with all there is to do in a household with four boys, (not the least of which is  a handicapped child), why in the world I would bother sewing.  I've wondered this myself, from time to time. So, after some consideration, this is my conclusion on the matter.

Sewing gives me something viable to do, when there's nothing more that I can do. And, it is something necessary  that I can provide that costs little in time, money or energy.

Going shopping for clothing is a rare and courageous act for this Mama.  I feel much more comfortable at my desk, stitching up a pair of britches, than searching for the right thing at the right price away from home. To do that, I either have to leave Ethan with someone, and wonder how he is doing; or I haul him with me, and wonder if this stress will produce seizure activity by the end of the day.

That said, it isn't as though sewing is all fun and games for me. Sometimes, it is downright frustrating. I've never considered myself a "seamstress", it isn't "second nature" for me, as it is for some. I really have to work at it, and my "creations" are pretty basic.  But, when all is said and done, I feel a sense of satisfaction that makes it all worthwhile.

I've made pull-over bibs for Ethan since the very beginning. My favorite pattern uses small hand- towels to which a neck opening has been cut and stretch ribbing added. I have carried this one step further, and made it even easier with unwanted sweatshirts. I simply cut around the neck opening and perhaps add one layer of fabric to the front. No need to hem, since knits don't fray. It couldn't get any easier or more absorbent or more comfortable for him.

With Ethan's growth spurt came the definite need for new pants. The last batch I sewed for him were at least 4" too short, and a bit snug around the bottom.  I'm using a pattern that I have revised so that we don't worry about a "fly"...they just pull up (and down), with an elasticized waist. I have to admit, they are a tad big on him; but, better that than too small. He's growing, afterall!

The most challenging of my recent projects has been homemade "Pull-Ups".  First of all, let me say, that Ethan is virtually potty-trained - has been since he was a year old. But, apparently I'm getting more fluids into him these days, so...well, we protect ourselves.  After a trial run, using fabrics that I had on hand that turned out  NOT to be waterproof, I found some appropriate fabrics, through a dear friend. Not only have these fabrics worked wonderfully, the friend of the friend decided to make them her gift to us. Doesn't that just melt your heart?  I've finished the first test batch of 5 pairs, saving the best fabrics for last, after I've made any necessary adjustments. They work, though; and Ethan seems to like them. So, let the sewing begin!

Are you beginning to see a common thread in this thread? Pull-over bibs, Pull-up pants, Pull-Ups...

You should be aware that boys with athetoid/spastic cerebral palsy have 4 arms and 4 legs that are continually trying to knock over the aloe vera plant, the hamper, the drying rack, etc., etc. And, I only have two hands, one of which is trying to hold him up, while the other pulls at his clothing. That leaves me at a distinct disadvantage, don't you agree?  The easier the clothing goes up and down and on and off, the better. The best way to provide that is to sew it myself.

It is one more way that I tell Ethan "I love you."

Redefining the "Smoothie"

Ethan considers eating a necessary evil. This is partly due to his Sensory Processing Disorder, and partly due to the cerebral palsy hampering his ability to chew properly or to swallow thin liquids. Hence, his meals must take on the consistency of a thick milk shake.

The surest way to insure that his intake of food and fluids is sufficient is to mix the components of an entire, well-balanced meal together and blend, adding enough yogurt or buttermilk and water to bring the mixture to the proper thickness. I do this in a 3-cup or a quart canning jar, using a Braun wand mixer. I put 11-yr.-old-boy-sized servings of each food group in the jar, adding the liquids last.  If, for some reason, it is too soupy, I add crackers, bread, instant potato flakes or instant baby cereal to thicken it again. The resulting mixture is usually 3 cups worth of puree, each mealtime. 


I use buttermilk or yogurt in his "smoothies" for three reasons:
1. He cannot tolerate milk (not even our fresh, raw goats' milk!); but,  fermented milk products are just fine. So, we make yogurt by the half gallons.
2. Because he isn't chewing his food, I figure that the additional enzymes in buttermilk and yogurt aid in the digestion process.
3. This is an important source of calcium.

There are advantages to having complete control over what goes into his mouth...
I don't think that it is a coincidence that he is the healthiest member of our family!  :)
Whenever possible, I use fresh, raw ingredients...our own eggs, uncooked oats, spinach...
Otherwise, with a few exceptions, he eats what we eat.  I have learned that,in addition to milk, tomatoes and pork do not "sit well" in his stomach. I also avoid sugar, excess salt and fats.

Here is a typical breakfast "smoothie": 1/2 cup raw oats (soaked in warm water), 1 egg, 1 banana, 1/2 cup of yogurt, and 1 scoop of protein powder.  I give him "dinner" at lunchtime...that's his "meat-and-potato" meal, with lots of vegetables, too. The evening meal is lighter, so as not to cause reflux at bedtime. A mixture of cottage cheese and applesauce and yogurt with some sort of grain (bread) is not uncommon. I also add supplements, as needed, such as EmergenC powder, herbs, liquid calcium/magnesium, melatonin, etc., which are barely noticeable.

He drinks his meals, on my lap, from a tiny cup, in little sips, which I deposit into his mouth. After making sour faces, perhaps even gagging down the first couple of sips, he relaxes and nearly guzzles the remainder of the meal, willingly and hungrily, after we "get his swallower working".

I am so thankful that all these years (and especially in his early years) we have been able to avoid a G-tube.  Meals that used to take an hour or more, now take about 15 minutes.  I do hope to have him  feeding himself and chewing someday; but, in the meantime, he is consuming sufficient quantities of healthy food and growing "big and strong" accordingly. At 11 1/2 years old, he now weighs 60 pounds.

For now, Ethan "eats to live", not "lives to eat".  And, that is something we would all do well to consider.