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I wrote this a couple of weeks ago. I knew things were going to get crazy, as we are in the middle of the below-referenced PCS. I am still trying to remind myself of all the confusion, anxiety and fear that Ted must be experiencing. I am still trying to temper my response to the one millionth question about Disney (We are NOT going to Disney! It was never on the table. Ever. Except that one time we went to Disney a year ago. Sigh.).
Some days are better than others, but it definitely is not as bad as it could be.
Unless, of course, I just jinxed us…
It’s been a rough summer. Not only did we move out of our home and into a rental in a completely different (and crappy) state, we have another big move coming up. With a family visit and wedding in between. We’ve been without psychiatric care – and it is so, so desperately needed. No therapies, no respite, no school.
I’m tired. I am bone weary. I could, in fact, fall asleep as I type this blog, except Ted talks every time he exhales. And, have I mentioned, he has very little concept of an inside voice?
We have a five month old baby. I figure it has been roughly eight months since I’ve had a decent night’s sleep. Eight. Months.
I am really freaking tired.
And I don’t do well without sleep. And, when I don’t do well, it is pretty much guaranteed that Ted won’t do well. I have to be on my “A” game all the time. And, honestly, I’m running more on my “D” game than not these days.
Like the schools I complain about, I, too, have fallen into crappy ABA practices this summer. In fact, I’ve unwittingly stopped doing ABA. I’ve stopped doing much of anything other than counting down hours until bedtime. What began with such promise and positivity has come crashing down with a resounding and disappointing THUD.
I have sucked as a parent this summer. Sucked. Sucked. Sucked.
Whether it is because my husband gets daily breaks from the stress that is our family home, or whether it is because he has a slight “outsider” point of view, he is, usually, much more insightful than I give him credit for. And if you tell him that I said that, I will have to kill you.So, with a gentle kick to the backside, my wonderful husband (that isn’t sarcasm) has reminded me that I can do better. That I need to do better. Tired or not, Ted does much better when I do much better. I’ve not seen the forest for the trees. However, as my husband reminded me, behavior is communication. And, god knows, Ted has been communicating with us. Yes, his perseveration and repetition has been unappreciated. But, he hasn’t been screaming or breaking furniture. Or to be more accurate, he hasn’t been screaming as much as he could be expected to. He’s anxious and needs reassurance. And it’s my (our) job to provide him that reassurance as best we can.
Part of my frustration with these behaviors is that, right now, I don’t know how to do that. We’ve had so much conflicting advice – answer three times and ignore after that, or answer all repeated questions even if it means answering 273 times a day. Either way it seems to frustrate him and it can ramp him up until he does meltdown. Likewise, His social stories that his old teacher made up have ClipArt pictures in them. Ted now believes with all of his heart that that teacher will be his new teacher. And that school will be his new school. Those kids are all in his class. When I try to explain they aren’t, bad things happen. I cannot win here, no matter what I do.
With respect to our move, I’ve come up with a plan to write one or two-word steps and draw a picture for each, thus making a bit of a check-list for him.
In the morning, right when he starts asking me if it is lunch time yet (he asks this a good 100 times a morning), I draw a new sign for 12:00 and tell him when the stove clock matches that card, it will be lunch time. I don’t know if it will help or not, but at least I will feel better about how I am handling things.
Another new implementation is the reintroduction of a timer. We will answer Ted’s questions, show him the list, try to reassure him, but when we need to take a break, we will set the timer on our phones (he is well-familiar with the timer concept) for a set amount of time. Again, it’s something we’ve done for a long time, but I’ve slacked off, big time.
The results thus far have been a mixed bag. But our lives are in such flux right now, it’s hard to tell if the solutions we’ve thought up don’t work, or if it’s bad timing to introduce these new strategies. I’ll tell you what, this summer has been a HUGE reminder that, as a special needs parent, I can never sit on my laurels. I have to keep innovating solutions, and trying to stay one step ahead of Ted.
I was caught flat-footed this summer. I admit it. It’s up to me to make some changes. I’m up to it. I can be a better mom. We’ll all benefit, that’s for sure.
How about you? Do you ever need reminding or have to step up your parent game?
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I’ve been in your shoes! We had a 4 month stint where we lived in hotels, friends’ houses and with family during our last move until we finally moved into our home. No therapies at all. Life was horrendously rough and being the 24/7 person who never left my son’s side was exhausting. We are only human and can only do so much without enough sleep. Don’t be too hard on yourself. Your son knows you care and are trying even if he can’t tell you!
All.the.effing.time!! Gah! As I sit here R is upstairs having a whale of a good time watching the same 5 sec sequence of a video over and over and over (Xmas one at that) and repeating a different 5 sec sequence over and over and over. *sigh*.
R and I were SO done with school that I decided we needed to take the summer to regroup and start fresh in September. Maybe not the best decision (time will tell) but one that I can live with.
This pulled at my heart and just so ya know…I heart you and am sending big, ginormous squeezes your way!!!