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When the Other Shoe Drops: Raising Children with Special Needs

By Kelly Haferblog-shoe

By Kelly Hafer

The other shoe has dropped; it always does.

I’ve written for the past month or so about the incredible improvements in Ted’s behavior and cognitive ability. I’ve shared how his expressive language grew exponentially, and his negative behaviors, violence and aggression dropped dramatically. And, I’ve also known ever since the start of the upswing that the other shoe would drop.

And drop it did.

Beginning last Friday, we have seen a slow increase in negative behaviors – he’s quicker to get frustrated, and to lose his temper. His stuttering is to the point where he’s nearly unintelligible. But, by far the most frustrating part of this downward slide is the “cloudiness” that is muddling his intellectual abilities. He’s unable to follow a single command, confused about where things are, timelines, plans, cannot remember from one second to the next…basically everything is confounded and muddy.

One of the more difficult things about raising a child like Ted is recognizing the differences in his cognitive abilities during these peaks and troughs. He could do things last week that he is clearly incapable of doing this week. The understanding is not there. His motor skills, visual processing, and language skills are different. This means how I parent him this week needs to be different from last week. I cannot get mad at him for, say, spilling his milk all over the table this week when his shaking is more pronounced, his depth perception appears questionable, and he’s confused. Last week, when he was mentally checked-in, and he was just being a stinker at the table, that spill is different. He could control himself then. Now, not so much. It’s taken me a very long time, but I can make that distinction now. I can parent appropriately for his spot in the cycle. It’s hard to remember, but I cannot compare the “two Teds.” One is working to the best of his abilities; one is clearly struggling, and needs an incredible amount of assistance.

I want to be really clear here. I’m not frustrated with Ted. I’m not upset with him. I’m not disappointed; I’m concerned. We’ve seen this cycle happen time and time again, but no one can explain what is going on with him. He’s clumsier during these times, again, the stuttering is ridiculous; you can practically see the confusion in his eyes. The current working theory is absence seizures or subclinical seizures. But, as the names imply, these seizures can be difficult to detect. We have yet to have Ted “time” his episodes in conjunction with a six-month out scheduled EEG. So we have these cycles that no one can explain. My son has periods of time wherein he is, yes, still developmentally delayed, but so much more in tune with his environment, his body, and the neurons in his brain appear to be firing at the appropriate level. And then there times like the one we are currently in.

We’ve not changed meds – yet. Nothing is different. The meds will likely have to change, however, because his cholesterol is suddenly through the roof. Rather than make a seven year old take Lipitor for the rest of his life, he’ll likely have to go off the Abilify, the one atypical antipsychotic that has worked for us long term. So changes are coming. It’s going to take us months, if not years, to find a med and dosage that will work against his mood ability, self-injurious behaviors and aggression, among other things.

Those six weeks are, right now, nothing more than a beautiful memory. A beautiful memory that my husband has completely missed due to his commitment to the Navy, I might add. The stink of it is, I have no idea how long this confused state will last, or how long it will be before we see another stretch of miracle growth – or how long that state will last: 2 hours or 2 weeks? I have no idea, but I do know that I will cherish every single moment of that time we do have.

Read more blogs by Kelly

Kelly Hafer

Kelly is a Navy wife and mother to four children: a 17-year-old neurotypical (if you can say that about a teenager!) daughter, 6- and 5-year-old boys on the spectrum; and, since life was getting a touch boring, another beautiful baby girl. Kelly is the Vice President of Marketing and Public Relations for Military Special Needs Network. MSNN is a peer-to-peer support organization founded to respond to the needs of all branches of the military and of our Exceptional Family Members. We strive to provide family and emotional support and lasting friendships – See more at: http://militaryspecialneedsnetwork.com, or www.facebook.com/militaryspecialneedsnetwork. Kelly has been featured in a collection of essays entitled, “Wit and Wisdom From the Parents of Special Needs Children.” She manages the official blog of Military Special Needs Network, www.MSNNBlog.com, and can be found as a guest blogger throughout the blog-iverse. You can contact her via email at KellyHafer@MSNNBlog.com

About Tidewater Parent Staff

One of our staff who provides news and information for families in Hampton Roads.

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One thought on “When the Other Shoe Drops: Raising Children with Special Needs

  1. Nik

    My son on the spectrum also has these time periods where he is less aggressive, easier-going, more patient, and just EASIER. And then he falls again. It is more than just regression. I have always felt it was much more than regression. Thank you for this post- I have more to look for to find more connections. It seems no matter hiw much I slow down, I am still going to be skimming past something important! I am grateful for blogs like this to help spread new ideas and give me new areas to monitor. Thanks for the post!

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