Friday, April 13, 2012

How I handled...

I had the good fortune recently to be Blogger of the Week on Circle of Moms. From that article, I received several questions and I thought I'd share some of the answers to the most frequently asked.

This was possibly the second most frustrating parenting thing I dealt with when it came to E. Potty training took us 5 years from beginning to end. The end being full independence - going on her own, wiping on her own, flushing, washing hands. We started at 2 like every other family I knew at the time. No luck - she didn't care one bit. When we switched from PullUps to cloth diapers at 3 yrs, she finally got pee trained because she could not stand the wetness. #2 was another story, which honestly surprised me since she disliked having dirty or messy things on her hands. But she didn't notice or care if her diaper had a mess. We resorted to treats and her physical therapist gave us some pictures as a visual aid which we laminated and taped by the toilet. And with a little time, she started to get it. By 4 1/2, she was going in the potty with hardly any accidents, but we had to do a re-training without the treats. Then the next big hurdle was public restrooms. She started kindergarten being terrified of the louder flush noise and would hold it all day until she got home. She used to walk home waddling like a penguin because she really had to go. I came up with the idea of covering her ears with her hands and using her foot to flush so the noise was less. Over time she has become less sensitive to the noise and uses her hand to flush but still covers her ears right away. My suggestion is try to break the overall training into small steps, and work at each one. No yelling, no pressure. Calmness reaps rewards.

This is definitely an ongoing concern. I worry about if she is getting nutrients, protein, fiber. It is touch and go still. We have phases where she does fairly well eating a variety, and others where we go back to one or two foods. She still asks for the same thing for lunch every day - PBJ, apple slices or grapes, pretzels. Occasionally she will add carrot sticks to the list. If I send something else, it won't be eaten.
Something that worked for us was her PT's suggestion to have her just lick a new food. E really liked that she didn't have to stick the food in her mouth and chew it. Her pediatrician also talked to her directly about food and said she should make sure that mommy was giving her one fruit and one vegetable with every lunch and dinner. She really took to that idea of being able to 'be the boss' of telling me to make sure she got a fruit and a veggie.
Now that she can write, I have her make her own shopping list. I tell her she can choose 2 grocery items. The rule is it cannot be candy or snack food. I know that might be tougher for a young child, but perhaps you can start off with having the child suggest a food no matter what it is. Having control seems to work tremendously with kids, especially the asperger's or high functioning autistic contingent. And keep trying. Experiment. Note what works and tweak it slowly to make it healthier. Note what doesn't work and if your child is capable, ask what he/she thought they did not like. E doesn't like sliced cheese because it "sticks to all my teeth and mouth and makes me choke". Granted it took her several years to give that sophisticated an answer, but if the child tells you what or why the food is not liked, you have an idea of other similar foods that may not work, or you can try a different form of the food. Example: pizza and macaroni and cheese have melted cheese, which does not stick or make E choke. However, a grilled cheese sandwich is still not liked.
Sometimes there is no rhyme or reason. It is best to not get caught up in it and move on to a different food. Come back to the offending one later (much later) and give it another try. Never force, and never use food as a bargaining chip for dessert, TV or game time, etc. The autistic child may never become a foodie; use the approach that he/she needs it for basic survival and expect nothing else. I try connecting it to a body part AND to an activity they like: the carrot you ate makes you see well so you can see birds better. Yes, it usually sounds corny but so far E believes it every time.

 Ah, stress relief. I am still working on that one. Calm even tones work wonders when speaking to your autistic child but can leave you with pent up frustration, anger, sadness, feeling sorry for yourself at the unfairness of having a kid with special needs, feeling hopeless and wondering if the child will forever be dependent, hostile that your partner does not help as much as you want, irritated, depressed, fantasizing what life would be without ...

ALL VALID FEELINGS! Most of them diminish, but the frustration and anger and irritation are the ones that like to stick around and mess with your head. I would say that it is probably best not to do what I did - push it all aside for as long as possible because gosh darn you have to fight for your kid. Don't be a saint. Don't be heroic. If someone offers help, take it. Chances are they, at best, will offer a different perspective or discover some trick that made that 4 hour tantrum into a 1 hour one. At worst, they won't offer help again. You quickly discover who are the truly wonderful people, and you embrace them into your life and sweep away the rest. You have only so much energy and chances are 90% of it is going toward fighting for your child. That leaves 10% for your other children, your spouse, chores, you.  And sadly usually in that order.
It took me breaking a wrist and being semi-helpless to understand that other people can do what I do, and even if they don't do it how I would, they stepped up and helped me even though I didn't ask.
Put yourself a little higher on your list for at least one night a week. Even if it's after the kids are in bed, take an hour and do what you want. I started by waking a half hour earlier and sitting in complete silence and no lights drinking my coffee. That lack of stimulation does wonders for calming me before the chaos of the day. I also make myself take a break at lunch during my workday. I make myself go for a walk or leave my desk and go somewhere quiet to read or go to the gym. Sometimes I will come home and take 10 or 15 minutes to also just sit and sip some water before I go pick up the children at daycare. If I am really desperate for some time, I declare a "mommy timeout" and go lock myself in the bathroom to calm down. This doesn't always work if they come find me, but even a minute or two to catch my breath and bite my tongue keeps me from yelling. If I don't, I find I am cranky and not as effective at being a good role model.

We avoid them. Well, we sort of did. Team sports are generally not the best ones for autism/Asperger's. Sports that are more individualized, even if there is a team component, have been ones that E has taken to. When she is done with her swimming lessons (she is an excellent swimmer, which is funny considering she does not like otherwise getting wet), she wants to join a swim or dive club. She also likes hiking because of the nature. She likes running, although she is not that good at long bouts. She gets tired quickly.
What we did here was find opportunities that let you try a class free or for minimal cost. We did a dance class, which was okay but more anxiety filled than anything. We tried soccer. It all just came down to her enjoying activities that were singular entity.

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