special needs parenting — 5 Minutes for Special Needs

special needs parenting



                               

The child reminded me of a poignant moment from her babyhood the other day. She was maybe three years old at the time, and still very much a baby with her speech  and social delays. I was with her at our church for some reason – going to a meeting or something and she was holding her favorite little super ball. It was clear rubber and had a bright pink sphere with a happy face on it. It was one of her favorite toys to carry around. It took me a few seconds too long to open the door and she got frustrated and threw her ball. I couldn’t believe how hard she threw it, and how far it went. Super ball, indeed! Our church sits on top of a steep hill, and that ball bounced all the way down the entry courtyard, out to the parking lot and down, down, down the hill. As it turned the corner I knew immediately we would never see that ball again and my heart sank. To this day, losing things is very hard for the child to handle, even if she “knows” we will eventually find it. No matter what it is she is looking for she cannot be calm until she finds it. At age three losing something permanently meant hour-long meltdowns – crying, kicking, hitting, whatever. Knowing this I spent some time looking around the parking lot, hoping the ball had landed in some nook or cranny of the asphalt, but it was nowhere to be seen. I had images of the thing rolling clear downtown. Hopefully some other child picked it up somewhere and enjoyed it for a while.

Goodbye is never easy, even as a grown up, but I believe that is where I am at.

Blogging has been an important part of my life for about three and a half years now, but I think it is a part that I need to say goodbye to, at least for now. Thinking about the child’s challenges and triumphs and recording them on my personal blog, and then here at 5 Minutes has been a real gift. It has helped me to stay on track with her, and to find inspiration and hope from fellow parents on this treacherous journey. I’m finding that this stage of our journey needs more active, direct interaction with her, and the time and energy required to keep blogging is a drain on my already limited resources. Sadly it is the easiest thing to let go of. I have tried to slack off in other areas and have found that it just adds to the chaos instead of lessening it.

I’ll be keeping my personal site “up” so that the archived articles can be accessed if people find them and want the information there. If I find that blogging becomes a useful tool again, I will jump back into it, but meanwhile I’ll be starting a new stage, and looking for new ways to make progress on this path. And hopefully some other special parent will pick up the ball and enjoy sharing with you all.

I wish you all God’s best as you continue to support our kids.



                               

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I’m back…

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.

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Interdependence

Nope. Not a typo. I know it is the Fourth of July. Happy Independence Day, everyone, and special thanks to our troops and veterans!

Grandma (my dear Mother-In-Law) is coming to visit us today, which means we’ll soon be having fireworks of our own. Everyone aged four to eighty-four in our house will be claiming “independence.”

I can do it myself! I don’t need your help! I’m in charge!

fireworks over a bright cityscape

fireworks by bayasaa via flickr

I think I’m starting to see that this isn’t really true for any of us, however. Even the most strong-willed and able-bodied among us need a little help now and then.

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Fixing the Unfixable

Apparently I have given the child the impression that this is what I am capable of. It was quite false of me to give her the impression that I can fix everything, and I am paying for it big time.

After lots and lots of temper-driven exchanges (and we both have hot tempers…sigh.) I stepped back and recognized the trend. Something will happen that I can’t fix:

  • She can’t go to the birthday party because she was sick the day before.
  • Her siblings are invited to something and she is not.
  • Plans are unexpectedly changed in a way that I have no control over.
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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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Patience Pays Off

Last week as I was writing about how hard it was to sit and wait for a pupa to get on with it and transform already, the little bugger was probably quietly doing just that. The next morning my husband picked up the bug house that the pupa had been inhabiting and I told him I was wondering if it was still alive. Knowing what he does about all things insect-like, my husband took it over to a bright sunny window and after inspecting it closely said, “The shell looks empty.”

“Empty? It couldn’t be…I just looked at it yesterday!”

He took the lid off the bug house and almost jumped out of his skin when he saw a large dark colored moth hiding upside down on the lid.

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Ready for Summer?

idyllic Summer in the tropics

I could be ready if Summer looked like this around here

I’m not.

Friends keep telling me how excited they are for Summer. School’s out – no more drop off, no more pick up, no more lunches to pack, no more homework. I do like all of those things. Really, I do. What I’m not ready for are the long (really long) days with three busy kids who expect me to be chief activities director. I haven’t signed them up for any classes yet. I keep saying I need to get a calendar out and start marking possible road trip dates…so why don’t I just get it over with and do it?

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Scary Memories

I was sifting through my pile of papers this evening in preparation for our IEP meeting next week. It’s been a while since I’ve really taken the time to go through everything and get organized. We’ve had a relatively easy stretch for the last year or so, and I admit I have let things slide quite a bit. Well, we had a little reality check last week when the child had an hour long meltdown with a babysitter present. Time to gear up again.

I think I know why I deferred looking at all of these forms and reports. Reading through all of the paperwork brings back memories of the really scary times parenting this child.

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My Social Story

I am a big believer in social stories. I think they are probably one of the most underutilized tools for all children. My theory is because they require a fair bit of customized attention to detail for the recipient they are eschewed as being too labor intensive. We tend to like things that can be reused like hand-me-down clothing. In other words we’re kind of lazy.

I first learned about social stories before the child was officially diagnosed with an autism spectrum disorder. We were in that scary middle ground when we knew there was a lot more to learn but we had no idea what we were really facing.

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Then and Now

My twins rediscovered a set of pictures from their big sister’s babyhood. These are pictures taken during her first 18 months or so – that blissful time of her childhood when we didn’t quite realize what we were up against. As I was putting the pictures away again one of them hit me right between the eyes. It is the classic picture of a new mom right after giving birth, disheveled, tired, and oh so happy, holding the baby as if they’ll never let go. In the picture I am seriously in need of a comb, the hospital gown is barely adequate, and I am smiling as if I just won the lottery.

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