5 tips for parents of special needs children

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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contradicting the norm: autism on the playground

contradicting the norm - autism on the playground
My favorite vacation spot is Ouray, CO, and I’m lucky because it’s only two hours away. It’s dubbed “Little Switzerland” and has gorgeous majestic mountains surrounding the small valley town.

I absolutely love the views and slow atmosphere in this quaint town. When myIMG_1164 husband, Justin, and I go on our weekend getaways once a year, we sit by the pool and I describe it like this; we read, we look up at the peaks, we look down and read some more, we look up at the peaks, repeat. We soak in the quiet, we soak in the beauty that fills our souls, we eat at unique restaurants, we RELAX.

But what do we do when we take two kids ages four and six, and one with Autism? Makes it much more complicated.

Our life is planned. We have a way we do things, we’re all fairly Autistic, or maybe Justin has conformed to Jeremiah’s and my quirks. We have places we like to eat, we know what we can do with the kids, we know what works…for the most part.

We used to love this park by the hot springs, but that’s been crossed off the list because Jeremiah LOVES swimming, and now that he’s understanding more, he notices the pool and only wants to get in. Don’t really blame him. So, thankfully the last time we were there we found a secluded little park away from the pool. Perfect.

Sunday we went to Ouray. When we arrived we grabbed food from our favorite deli, Backstreet Bagel, and headed to the park. Beautiful day,  stunning views, yummy food, who could complain?

Going to the park has always consisted of us chasing Jeremiah. He’s a runner, an eloper, a wanderer, whatever you want to call it.

He’ll walk right out of the house if we’re not extra cautious at all times. So, we’ve always needed to be within arms length or like a fit police man on steroids, ready to pounce when we’re in a public place. Anywhere other than a park, we hold his hand, or put him in a contraption.

We were expecting the norm this weekend. Except guess what? It didn’t happen! Yes, I’m screaming on the inside. Jeremiah stayed in the vicinity of the playground most of the time. Several times when we called his name he responded and turned around, and there was an occasional testing of the boundaries, but that was toward the end and we’d been there for about two hours. Yeah. Awesome!

I thought it would be years before we could ever go to the park and enjoy it as a family instead of being hyper-vigilant about Jeremiah and where he was. When he comes down that slide is he going to bolt? What if he walks around the side of the play set and jets, will we be able to catch him before he reaches the road? Okay, you set up post here and I’ll go around. Although we still have to be very aware, and reading a book or looking at our phone while at the park are impossible, I’m relieved to see that outings might be morphing.

Another cool thing was this: Jer obstacle course

Yes, he’s breaking the law, but if you can look past the CAUTION tape, you can see Jeremiah making his way through an obstacle course. Something he would normally stare at and avoid (usually the only equipment utilized at the park is the swing set). I was “cautious” at first, and in fact told Payton to stay off the steps, but when Jeremiah began traversing the wayward yellow strands, I zipped my mouth and watched. (I’m learning to do this more as it teaches me quite a lot about my child.) He scaled up and down those steps, and over and around the tape several times. I’m thinking our next project will be an obstacle course since he isn’t really fond of the ginormous play-set we spent a ton of money on and several weeks putting together this spring. Some stupid simple yellow tape and some steps, got it covered.

J & J swingingOur park adventure so contradicted the norm that Justin was able to relax and played with the kids (actually we both did). It was so fun to let down our guard (a little) and play! Justin climbed on the rainbow bars with Payton and even convinced himself he should try out for American Ninja Warrior. 😉 That’s all it takes.

I hope this gives some encouragement to those of you who have runners. Yes, once in a while Jeremiah still tries the door handles at home. No, I don’t trust that he won’t run into the street (he still has no concept of the danger that lurks in the road, commonly known as cars). But I have hope. I see that he’s changing, he’s understanding more. This is something we can build on, or at least for the moment it is.

Wishing you a great day and some fun park adventures before summer ends.

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