At 42 Degrees

At 42 Degrees

Friday, June 20, 2014

Help, Want, What?

It is rare for Isaac not to be able to get his message across,...he is truly gifted with nonverbal communication skills which he skillfully merges with what vocabulary he does possess,...but from time to time,...even those skills evade what he is trying to communicate,...and that's when life gets tough.

"Help."..."Want."...says Isaac,...usually when he isn't feeling well,...and we are left to guess, "What?"

An obvious illness is easy to diagnose,...although extremely difficult to explain to Isaac what is wrong and that it is only temporary and with a little rest and maybe a little medicine, ick,...he'll feel better soon,...and we hold, and hug, and offer kisses and reassurance,...but an elusive illness or hurt can set our world on end,...when Isaac whimpers, "Help,...Want",...and we are frantically asking, "What?"

Such gaps in communication can make even simple insect bites take on new dimension when it is 3:00 am,...and Isaac is frantically scratching - in full sensory overload - and all the lotions and creams can't quell his, "Help,...Want,"....and we are frantically asking, "What else can we do?" - and the answer is nothing, but hold, hug, and offer kisses and reassurance,...and cling to the hope that we'll be able to explain such inconvenience as an itchy bite to our son in the near future. 

Summer time and insect bites go hand in hand, least here in the deep south,...and perhaps last night was a rough night with Isaac so restless and so upset by the hurt of those little raised bites,...and the lapses in our communication were sooooooo glaringly obvious. With Autism and Apraxia, the simple become complex,...and you can't just explain hurts away, you offer what assistance within your ability - lotions, creams, long sleeve shirt, and very, very, very short fingernails for our little guy,...and this is a reality we live with. 

Don't get me wrong,...we are so grateful for what Isaac is able to communicate,...he's come such a long way and it is a gift,...that he can at least say, "Help and Want,"...but the rub is that he can't answer the "What?" - "What, Baby,...what help do you need?" "What do you want, Sweetie?"  -- and at this juncture,...summer of 2014,...Isaac can't answer, we frantically guess, we hold and hug, and offer kisses and reassurances,'s all we know to do,...and all we can do is pray that it is enough. 

This morning Isaac is better,...we slept in, rather late, and I tried a different brand of Hydrocortisone cream, which has actually reduced the redness of those bites, yeah,...although applying the Hydrocortisone cream would be another post unto itself as Isaac doesn't willingly do soft and gooey and that's another sigh,...but as I type these words I can hear him giggling and singing in the living room, "Lolly, lolly, lolly, LA!" -- direct quote - and I have no idea what it means, but it sounds happy and it's not a whimpered, "Help or Want," and that's what makes makes my heart soar. 

As for future gaps in communication? We are walking by faith and not by sight,...and I frankly don't have any answers,...but I do have faith, hope and love,...and I know the greatest of these is LOVE!

Until I post again,...may God bless and keep you!


  1. I keep my fingernails short too. It's for functional purposes (rock climbing).

  2. Sometimes Benedryl will also help get his antihistamines under control. Poor guy. Poor mom!

  3. hello. my heart hurt reading your post about your precious boy. i have a daughter (12 yrs old) with apraxia, intellectual disability and cp. although she like your son has come a long way in recent years and is also able to communicate most needs there are times that just like your son she is not able. our biggest challenge right now is her monthly menses which started 3 months ago. i was dreading this "milestone" as i knew no amount of explaining (its only for awhile, medicine will take away the bellyache, all big girls have this etc) would help my girlie to understand... all she does is cry cry cry . i hold her and rock her and tell her all the things but man, it is so hard. she just doesnt understand...

  4. Anne, is hard,...there is no sugar coating to cover this aspect,...and it is heartbreaking,...we love these children so much and we are so helpless,...other than to hold, hug, offer kisses and reassurances which fall more for my own ears,...because I am doing all that I can,...and trusting that it is enough for the circumstances,...which at least, I know are but temporary,...I wish I had answers, but I don't,...and so we walk by faith and not by sight, daily,...and truly cling to faith, hope and love,...and the greatest of these is LOVE,...sending out love to you and your precious daughter, helps so much to know that we are all not alone in these struggles,...which are as bewildering as they are unique. God bless!


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