Self Care — 5 Minutes for Special Needs

Self Care



                               

Sorry I disappeared for a couple of posts there. We were traveling on the days that I was supposed to post, and although I had great intentions of writing something ahead of time…well, you understand.

We took care of my mother-in-law for a couple of weeks. It was easier in some ways, and harder in others. I see her declining ever so slightly. The good news is she is too confused to fight with us as much as she used to. The bad news is, she is very confused. First she was visiting at our house and she kept thinking that her things were missing because her brain was spending some portion of time telling her she was at her house. One suitcase full of clothes was not satisfying her idea of how much stuff she should have. Then when we took her back home and spent several days there she kept making reference to our house and “When were we taking her home?” I am grateful for the (more) pleasant time we had with her. I want my children to have good memories of her. These care-giving weeks just deplete my energy that much further.

Summer is hard anyway. The child is reverting to some very tough behaviors and I keep slipping in my attempts to address them, which doesn’t help. She is tired of being with her siblings, and in general missing the structure that school provides and I can’t. School is only a month away which seems both close and oh, so, far away.

The one highlight so far is that our family went to Legoland for a bit of a respite during our visit with Grandma. It was our first trip to a major theme park, and I admit I was nervous. I was particularly concerned that our boy might wander off and get lost. We practiced three skills related to that before we left. Every time we were out in public I had the kids practice “staying together” which was perhaps the most important thing. We also practiced standing still and calling to our family using our last name (‘cuz there are lots of mommies at Legoland). Lastly I had them practice asking for help from a safe person – an employee or mommy. The actual visit went really well. No one got lost, though there was plenty of opportunity, so I was glad for our skill practice. There were only a couple of long waits and only one of those was what I would call frustrating. I liked the fact that most of the rides there require the rider to actively participate – pedaling, pulling ropes, turning knobs, pumping, steering, etc. Most exciting was that one of the longer waiting areas had a Lego play area in the middle where the kids could go build things while someone stood in line to hold their place. The child was initially hesitant to go in, but when she did she actually “made friends” with a couple of the girls that were in there. They worked together to build a huge tower of Legos, and then knock it down. The girls she met were a little younger than she is, but I was so encouraged that her social skills were up to connecting with strangers and playing cooperatively. Those are the moments that really keep me going.

I hope your Summer is filling up with good memories. What’s your favorite memory so far?

a Lego model of the Millenium Falcon

The Millenium Falcon in Legos…and now I suppose I must introduce my children to Star Wars. They had no idea what this was all about.



                               

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It’s the Little Things

My girls are suddenly into having pretty fingernails. They want me to use nail polish and make their fingers “fancy.” The four year old is particularly hooked on anything fancy and, in spite of her tomboy spirit the eight year old wants anything her sister gets – especially Mom’s undivided attention as I apply the polish.

Now when was the last time I took the time to make myself fancy? Let’s see…

  • I haven’t had a haircut in over a year.
  • Showers are still a rare and special treat.
  • Last time I had a real pedicure was almost two years ago.
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Pain Thresholds

The child has a very high pain threshold. She can run into a brick wall, fall down, get back up and continue on her way as if nothing happened. We theorize that her hypo-sensitivity to pain contributed to her aggressive behaviors when she was younger. I don’t think she understood that those actions were painful to other people because she didn’t feel pain herself. Just a guess.

It seems like this high pain threshold could be a good thing in some ways, but lately it’s getting a bit scary.

Minor injuries have been turning into badly infected sores because she doesn’t tell us that she hurt herself.

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As They Grow…

I am the first to admit that March 7, 2007, was one of the toughest days of my life. I sat, holding the baby that only a week prior was declared “mine” in a court of law, while a neurologist told me my son had a diagnosis that changed his life forever.

I felt numb. I felt like I couldn’t breathe. I felt alone.

I bought chocolate. I bought wine.

I had to tell my mom…my best friend…my daughter.

All those years ago, I was sure that getting over the grief and desperation, and finding the point where I felt that I was educated enough to be an advocate was a huge achievement.

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It’s POTTY TIME!!!!

A few years ago, I fell in love with Signing Time. Jack was struggling to do much more than scream and I was increasingly frustrated. In a last ditch effort, I bought some DVDs and prayed that he would communicate with me. Slowly, he began to sign (things like more and done) and I felt like maybe I could communicate with him.

That’s when I decided that I was going to stalk Rachel Coleman (co-Founder and general all-around awesome human being). I followed her on Twitter and began to join the weekly Signing Time chat (sadly, they’re no longer doing it–because it was SUPER fun!).

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Don’t Forget An Important Part of Your “Thankful For” List

Thankful

A Day to remember why you’re thankful. What you’re thankful for.

Thankful for partners, the few (or more) supporters that surround you, jobs / careers, friends, insurance, making it this far in your journey. This year, this time, I encourage you to reach within, look within – to you. Inward to your strength, your drive and determination.

This year, I hope you’ll take a moment to acknowledge yourself, acknowledge that you are a very large piece of your child’s puzzle…and you are someone to be thankful for.

Happy Thanksgiving!

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It’s Not a Race

I think we are about to hit an interesting phase of our family. The younger apparently neurotypical siblings are about to reach certain developmental milestones before their big sister does.

 Little boy has just about mastered his daytime toilet learning. One of our first signs that he was physically ready for this achievement was that his diaper was staying dry overnight. Just about every night his pull-up is dry, and when this box is used up one way or another, I don’t plan to buy more. Big sister still needs pull-ups at night, and there’s no getting around it. Those underjam alternatives for bigger kids would be wholly inadequate to the task.

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Bedtime (Yawn) Routine

We figured out a long time ago that the child works best with routines, but with an occasional change of pace. I am also noticing that her apparently neuro-typical siblings can take advantage of routine to create chaos. Recently this has all appeared in the form of marathon bedtime routines that leave me ready to pull my hair out. For the past three years our bedtime routine has not really changed:

Try the potty, put on jammies, eat dessert, brush teeth, read stories, go to bed…

…in that order, directed with simple phrases. We had it down to a system. Initially it really took two adults to oversee this with three children, two toddlers and one with developmental delays.

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When I Discovered I Was Part of The Problem

Ours isn’t the usual superhero story.

When I brought my daughters home from foster care I anticipated grief, health issues, tantrums (they were both toddlers, after all). But I didn’t think that 7 years later, one would be healthy and well-adjusted while the other seemed to fall apart emotionally and physically in spite of interventions. I never would have imagined that after thousands of hours of time and care, I’d be walking my daughter into a residential treatment center, and walking out without her.Raising special needs kids feels like a job for supermom... but is it?

Even more than the stress and challenges of raising a child unresponsive to intervention, is the realization that my own supermom tendencies made it worse.

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New year to begin…

I know what your thinking…NEW SCHOOL YEAR?   How many days till school starts???  I have a friend that started counting the minute summer started.  I enjoy our homeschooling time together.  I love the beginning of a new year…the goals for the year, the dreams of what you want to work on, the reality of what will really happen.  The fresh Sharpened pencils, crayons (even though we have 12 boxes already), the paper, the books, the construction paper…the excitement…the adventures. 

This past school year offically closed today.  My son had his evaluation that we have to turn into our school system with our next notification letter for the upcoming school year. 

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