5 tips for parents of special needs children

Thinking positive is what gets me through. Crazy thing is I’m not a positive person. Now you say, Yeah right, sure you aren’t. But I’m not, I’m quite pessimistic, really the kind of “glass half empty” kinda gal.

I’m fairly positive when it comes to autism though. I’m learning from some of the best, and I’ve mentioned them here before, a therapist, a special education professor, autistic adults, and parents of autistic children who look at their child’s autism in a different way than most. It’s really helped me to see autism from a whole new perspective.

But what happens when the road is extra rough, whether it be normal life or autism? I won’t lie, it’s like a raging river in our house the last few weeks, I’m being tossed under the rapids along with my husband. I want to be honest and I know many of you face these same situations too.

In an effort to share with you the reality in our home, but also in an effort to avoid bogging you down with the negativity…ah heck, forget the latter, here’s what hell’s broken loose here. Some of this doesn’t even have to do with autism, because if we were to take a check of life, there are many complications that have nothing to do with autism.

• Our washer broke in April.

In the last two weeks:

• Our refrigerator stopped working a week-and-a-half ago and we haven’t been able to get a repair man here. When your family eats mostly fresh foods, no packaged foods (except for the kid with autism & the desserts) this is a problem.
  And honestly, the fridge and washer aren’t the biggest deal around here. When I hear my friends complain about their car causing problems, their appliances quitting, their plans going wacko, I sometimes want to say, “Spend some time over here and those will be the least of your worries.” It’s not always autism, but those hard days can tip us over the edge.
• I had a thyroid biopsy a week-and-a-half ago because of my rare cancerous disease. I still haven’t been told the results of that test.
• The school year ended and summer began. Adjustments for everyone.
• Jeremiah learned to unlock deadbolts. He wanders and has zero awareness of the dangers cars careening down the road pose (or any other dangers for that matter).
• Jeremiah is realizing that he no longer wants to wear a wet pull-up. Therefore, he is removing said pull-up and then going potty. So, at five (and 50 lbs), he’s obviously not potty trained. He’s nonverbal, so this poses extra difficulty in the process, nor does he understand all language. “Potty goes in the toilet,” means nothing to him. “That’s gross,” means nothing to him. Besides all the angst this causes – potty on the bed, potty anywhere and everywhere – it’s awesome that he’s beginning to understand the concept – not liking to be wet, the first stages of potty training. See, there’s that positive outlook I mentioned earlier. Yeah…
• Jeremiah doesn’t like being poopy either, so he sticks his hands in there and it gets everywhere. I have back problems and overall pain, so taking care of this is quite taxing.

This is definitely a short list of what’s going on. We have another child besides the one who has autism, my husband owns a small business, and, yeah that disease I have. It can be overwhelming.

These are a few of my favorite things..when the kid pees, when the fridge breaks, when I’m feeling sad, I simply remember my favorite things, and then I don’t feel so bad.

If it only worked!!

I know some of you are wondering how to get through the next day, or even this night. I don’t have a pat answer, or a numbered list of steps so you can feel fabulous in one week. I do however know how I handle the rough and tumbling waves. Right now I’m not handling them well at all, but I wanted to extend some hope to you who might need an overhanging branch in that raging river you’re riding on.

1. Stay positive. Look at what ‘s good in your life. As I shared my recent circumstances with a friend, I was in despair, but then I began telling her about some other situations and I realized what good things were going on despite how I’m feeling. One of those is a grant we received for an iPad, case, and apps. There are good things around you, you just may have to do some demolition to see them for what they are. Same with how Jeremiah is noticing that he can pee outside of his pull-up and he’ll stay dry. Hurray! (Am I supposed to celebrate that?)

2. Grab an ear. Find someone who listens to you and is empathetic. Even if you have to pay a therapist. 😉

3. Do what you want. Spend time doing what fills you up. I know this is much easier said than done, but try to take the time, it’s essential to caring for a child with special needs.

4. Support each other. If you’re married, support each other. Have open communication and talk about what isn’t working and what is working. Listen to your spouses needs and desires and help them. Then ask your significant other to read this post. 😉

5. Listen to others who talk positively about special needs. They can have their bad days, we all do, but you want to surround yourself with people who will encourage you to see the best in your child, not the worst. Wallowing in those negative places won’t help. At all.

Sometimes life is hard. Sometimes autism is difficult, and it’s hard to see the rainbow. I hope this helps you know that even though I try to speak positively about autism, there are days when the rapids are washing over me, days when life is tough. But even in these days, I often come to the end knowing that it’s going to be okay, I can still see my beautiful child and know that one day soon it’s going to get better.

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