Ahh...summer! It's here! Which for anyone with a child suffering from SPD or autism knows summer requires a schedule change. Little Miss does not do well with any sort of change, so the past two weeks have proved pretty difficult. It is going to take time I'm sure and then just as soon as we all get used to it it's going to be school time again and another schedule to get used to all over again. Great!
The past two weeks have been filled with tantrums, meltdowns, restless nights/naps and decrease in appetite for Little Miss. The meltdowns and tantrums I can handle...or at least try to, however, the restless nights/naps and lack of appetite worries me. Little Miss and Little Man both have enzyme deficiencies in their GI tracks (they were both born without the sucrase enzyme in their GI tracks) which means that they need a special diet to stay healthy, strong and keep them growing and stop them from loosing weight. Since the schedule has changed (or slightly before it changed) Little Miss has been barely eating. I haven't noticed her loosing weight though but I might if I was weighing her everyday...I don't know.
Since Little Miss is so difficult most of the time and obviously doesn't do well with changes I have yet to start her on this special diet of no sugar, no juice, no fruit, no high fructose corn syrup and so on. It sounds selfish of me (ok it is) but I am just picking my battles at the moment. We had her IFSP on Friday and decided that since I have all three therapists here three days (1 day each) a week then we need to start this diet. And let me tell ya, I'm nervous and IT'S.GOING.TO.SUCK!!! We're going to have tantrums and meltdowns times 4 (breakfast, lunch, snack and dinner), she is more than likely going to be eating and drinking less than she already is and I wouldn't be surprised one bit if she gets admitted to the hospital like Little Man did because of a surprising weight loss and dehydration. We'll see!
It's bad enough having three semi special needs children, having them all at home with different needs and wants, summer home schooling my oldest with her regular school work and her vision therapy, trying to keep them busy and happy while we wait for our new swing set and now to add on top of all that we're going to start something completely new to Little Miss. I'll be praying every night that I don't loose my mind...at least it would be a short trip though! ;)
We're going to be having family days all summer on Tuesdays which will be fun. BBQs, fun trips to local parks, museums and festivals and just being together as a family. It's usually pretty difficult to even go to Wal-Mart with Little Miss, although she has improved somewhat, so going out on these family days will be fun but probably more stressful then fun. Taking the kids to a big animal park last week was fun minus the tantrums, meltdowns, screaming and strange 'WTF?' looks from strangers. Although, as you can see in the above photo she did love feeding the goats! That 'my child has SPD' sign on her back is sounding better and better. Which brings me to my question in this post:
Question: When you go out in public and your child is having a serious meltdown and you're getting all kinds of looks from bystanders, what do you do? Do you tell people that your child has SPD (or whatever it is that they suffer from)? Do you ignore them and mutter, 'If you only knew' in your head? Or do you do something else? I would love some tips on how to save myself from embarrassment and stares.
1 comments:
I just deal with it the way I know will work best. 9 times out of 10 I'll never see those people again, so who cares?
If they say something to me, how high my response on the sarcastic and snarky scale is depends on how thin my patience was to begin with and how rude their "advice" is.
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