Narrowing Solutions for Your Special Needs Child

   By ginabad  Sep 11, 2011

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I learned an important lesson this summer: I can’t do it all.  And by “all”, in this case, I’m referring to “all” the therapies and treatments I can implement to help my children improve their skills sets and behaviors.  Case in point: I decided this spring to test out restricted dieting on my children.  I couldn’t see what harm it would be in removing glutens or caseins (dairy products).  I thought I’d start slowly, learning while at the same time trying it out. We started with removing caseins from the menu, because this, for us, was the easiest.  We are not big fans of any dairy products except perhaps cheese, so it was a not a big deal, at first.  Then we realized how difficult it is to eat out without dairy products of some sort in your food, and with the onset of summer, our kids were pining for ice cream!

I quickly learned that before jumping in, it might be a good idea to have some strategies in place.  Now, we are also gluten-free, and my daughter has displayed new unacceptable behaviors that we are dealing with.  Once again, I was overwhelmed, especially after the summer programs ran out and my summer child care provider quit.  The stress and the tension got to me, but I realized from past experience that the only way to work this out was to make a plan.  I’m not a very organized person but raising special needs children has taught me that organization is a lifeline when things are insane.

This is my plan of attack when an endless array of challenges faces my kids:

1. Have a plan. I’m not good at this, but as a special needs parent, it’s a necessary practice.  You not only do you have tons of options of treatments and providers to choose from, you also need to learn about them in-depth.   Before you start something new, take the time to sit down and learn the pro’s and con’s of each thing.   Some things you’ll need:
   
   • Files:  You can’t do this without a filing system. A lot of treatments new require paperwork, and the paperwork usually records - lots and lots of records. If I didn’t have a folder and area for each child, I would never find what I need to get started, and might miss some critical deadlines.
   • Organization system: Whether this is a paper notebook, a spreadsheet, or one of those online systems, you’re going need a place to sort all these new ideas.  I have not mastered this area, yet, I’ll admit, but I’m very good with notebooks as opposed to software – that just takes too much work for me to maintain!
   • Calendars: I live and die by these! I have a desk calendar, two wall calendars (one on each floor), and my Outlook calendar.  My upstairs calendar is for my work projects, my desk calendar is for daily things I need to review, the downstairs calendar is for appointments – and all of it goes into Outlook.  This actually is my organization system!
2. Prioritize.  Ugh, for a person who is as disorganized as me, this is an ugly word, but when I think about my children’s priorities, it’s easy.  I break it down like this:
   
   • Safety: Is the behavior my child is displaying dangerous or harmful to herself or others? If so, then testing out strategies that can resolve the issue are tried right away, be they behavioral or biomedical.  We may even forego planning if it’s a big enough concern. For example, Zoe started biting her wrist in times of stress this summer, rarely, but in the last few weeks this behavior has ramped up and her arms are suffering bruises, so we are trying a wealth of things to address this now.
   • Health: A sick or suffering child can be heartbreaking or completely destructive, depending on how he or she copes.  If they have health issues, big or small, we will always consider those next. For example, Amelia has had a runny nose for a number of years. Daycare used to send her home regularly.  After much trial and error (medicine, change of area, food), we discovered that her sinus issues cleared up once we eliminated milk products.  Problem solved, and no nasty germs spreading!
   • Reduces their stress. If I can find a way to help my daughter with autism express herself without having a meltdown, arm biting, or head banging, she has a much better day, sleeps more soundly, and performs better at required tasks.  It’s not always easy, but we employ a regimen of techniques to keep her happy and disciplined.
   • Reduces Mom and Dad’s stress.  Steps 1-3 above will normally do this, but sometimes a happy child is being destructive or rude or misbehaving.  We work hard to ensure that they are playing politely and constructively, and when we can, quickly discipline them. Example: we were at a movie last week, and Zoe spit some water at the person in front of us.  The response was a stare so frightening that my stress levels went up. So we left the theater and relocated to another kid-friendly movie…sitting far away from people.  Stress gone!
3. Do one thing at a time.  Of course, you are going to do multiple treatments with your children, but when you start something new, you need to really focus on it.  Continue with things that have worked, but take on one new thing at a time. Once it starts to work, or you have decided to give up on it, then move on to the next one.  You do not have to wait until something is solid, just until its part of your child’s expected routine.

With a little extra effort, even the mort disorganized person can find a way that works for them to sort through the heavy build up of treatment plans, diets, supplements, medicines, and staff that you may need to help your child be successful…and lead you to a more peaceful family!