Wednesday, March 23, 2011


I wanted to thank each of you for taking the time to share your advice, personal accounts, and encouragement that it would be okay for me to take a trip without M.

I sent many of your comments to the other half--I thought it was very important for him to read so many viewpoints that differed from his.

It has been decided that M will come with us.  I know he will have an amazing time once we get there and am hoping for a happy surprise on the long flight over.  The good news is that my wonderful mother-in-law will be coming with us to help with both boys.  This may be even better than the original plan of just taking B with us as now we will have the opportunity to get away occasionally without either of the kids!  I see fruity drinks with umbrellas and lots of time lounging by the pool in my future and I cannot wait!  The weather has been awful here for weeks, so this trip can't come soon enough.

Thanks again.  I so appreciate those who take time to read what I write, but even more so for those who are willing to share their opinions with me!

Monday, March 7, 2011


I posted the following at Hopeful Parents yesterday.  Nothing fancy, but something I could really use your input on as we try to make this tough decision!

Instead of writing something poignant (ha!) or witty (right!), I could use a little help from you Hopeful Parents out there.
The other half is getting to go to Hawaii for business next month and we had planned on the boys and I meeting him at the end of his conference for a family vacation.  We were fortunate to go to Hawaii just over a year ago as well.  It was a lovely trip, aside from the awful-ness that was trying to fly home.  M did pretty well, all in all, but in truth, he is a different child today than he was just 13 months ago.  
I thought I could handle the 5 1/2 hour flight to Oahu by myself, but after flying back home to visit relatives last week, I absolutely know that I would not be able to do that with two young children successfully.  M's sensory issues have multiplied greatly and his ability to not lash out at me (verbally and often with pinching and grabbing) has gone right out the window.  The flights to and from our visit weren't the worst flights we've ever taken, but they were also far from the best, and they most definitely filled me with more consistent stress because I was aware that he was on the verge of a (loud) tantrum at almost every moment of the flight.  
My amazing mother-in-law has offered to fly with us to Hawaii.  This would be wonderful on several accounts.  Not only would she be an extra set of hands at the airport and on the plane (allowing me to actually get out of my seat to use the bathroom, which you know is going to need to happen on a flight that long!), she would allow the other half and I to take our own time, free of the kids, if we wanted it.
But here's where I need your help...she has also offered to fly to our home in California to stay with M while the other half, my typical four-year-old, and I go to Hawaii by ourselves.  The other half won't hear of it, but I have to admit that I think it is a really nice idea.  First off, we have two other domestic trips planned this year that M will absolutely be included in.  And second, doesn't B, my typically developing child, deserve a vacation where he can go places we normally wouldn't be able to go without the constant worry that it could end at any moment based on his brother's needs?   And as guilty as it makes me feel to admit it, I could use a 'normal' vacation as well.  It would be great to eat out at a restaurant, leisurely, without worrying that M will yell, or worse, try to grab food off of another diner's plate.  (yep, that happened to us the last time we went to Hawaii)  
It is hard to imagine how looking at photos after a trip like this--with one very important family member missing--will make us feel.  Just thinking about it certainly stirs up all sorts of emotions in me.  And I know that M adores the sunshine and being at a hotel.  But would I be the worst parent in the world if I actually did take my mother-in-law up on her offer?  Have YOU ever made this sort of decision?  I would love to hear your personal thoughts and stories.

Wednesday, March 2, 2011


I have a group of Moms I meet for a quick breakfast, two to three times each week.  We formed our bond through our children, all who have special needs.  Our children vary in their diagnoses, which is actually way more beneficial than I would have been able to predict when we started our breakfasts two years ago.  One friend has an adult daughter, almost 22 years old, who has non-verbal learning disorder.  A is a lovely, outgoing and talkative girl.  Funny since the label she has been given would imply that she didn't speak.  She often (without realizing it) offers me exceptionally poignant insight into the world and minds of people with special needs.  This morning she said something that put a little pang in my heart.

As she was relaying a story of her early years of elementary school, she mentioned a girl who was in her special education class that had autism.  This girl would, as so many people on the spectrum do, flee the classroom-seemingly for no reason-and retreat to the playground swings.  A told me that the teacher was new to teaching children with special needs and could not understand this girl's behavior.  At seven, A was able to tell her that the girl just felt overwhelmed and needed to calm herself.  But that wasn't what struck me so deeply.  She went on to say that she told the teacher that kids like this girl just needed people to be nice to them; to try and encourage them rather than discipline them. Because when you try to discipline her, she gets scared. There...those last three words.  That's the part that stabbed me in the chest for a moment.  You see, I struggle greatly with the line between encouraging M and disciplining or reacting negatively to him .  And I feel like as his sensory troubles increasingly take over his ability to engage with the world around him, the more my likeliness for 'disciplining' him becomes.

Over the past month, M has started going into our food pantry and our refrigerator and freezer.  He does this at least 20 times a day whether I am in the room with him or not; whether I have just scolded him for doing it two minutes earlier or not; whether he has just eaten something...or not.  His favorite targeted items are plastic  tubs (like cream cheese or yogurt), of which he will gnaw on the edges of the lids.  He also really likes to grab the boxes of broth and soups in the pantry and squeeze them or chew on them.  The 'normal' response to this behavior would be to ask a parent 'do you have other appropriate items for him to chew on?'  And the answer to that would be, 'more things than you could possibly imagine!'  I would estimate that over the past three or four years I have probably spent a few thousand dollars on 'chewies,' or replacing clothing or other ill-fated items that met M's mouth.  He will generally find a chewy of choice and stick with it for a few months and then get bored with it and need to find something else.  For those not in the know, many people with oral needs such as this, use therapeutic chew tubes, 'chewlery,' or vibrating z-vibes, etc.  These items are not cheap, especially when they tell you that your child shouldn't be able to chew through the item, but he does!  I can't even tell you how many of those chew tubes we have chewed through at around $6-7 a pop.  And as much as you hate feeling like your child is a dog given items to occupy his chewing desires, the alternative is worse.  I've mentioned it here before, but our book and dvd collections are a nightmare; chewed on cases and toothmark-filled book bindings.  It's hard to not get a little crazy over the fact that your child can't be trusted to have a library card for school because you'll end up paying for each book he checks out. (and you have to hide any book your younger son checks out) It's hard to tell your younger, typical child that you're really sorry that his favorite book just got ruined.  And it's hard to think that you will likely not ever be able to have those 'nice things' you sort of imagined you'd one day be able to have when your children got older.  Shallow, absolutely.  But that's sometimes how I feel.

Back to what A said about discipline making someone afraid, and I use the word 'discipline' simply because A used it when describing what she saw as a child...It's whatever word you want to ascribe to the reaction you have when a child who may or may not have the cognitive ability to understand his actions does something that you believe shouldn't be done.  I struggle greatly with controlling my emotional reactions to things I think aren't right, and in this world of autism, there are a lot of things that aren't right to me that I probably need to let go of and relax on a bit.  I'm totally a libra; a strong sense of right and wrong and a sensitivity to injustice.  But with autism, what I perceive as wrong, my child doesn't. In fact, beyond perceptions, his body simply has needs to fulfill that are completely out of my realm of understanding and must be met in order for him to attempt functioning in my world.  It's an incredibly difficult concept to try and grasp for anyone, even if you're the parent!  But it's getting to that point of accepting what is out of my realm of feeling for myself that has to occur if I am to find some semblance of peace in my new normal.  And because if my own child can't feel safe and unafraid with me then how will he ever feel safe and unafraid with anyone else?

And for the record, M opened the fridge three times and the freezer once during the time it took me type this.  Fridge lock and lever handle cover are on order from Amazon.  Thank goodness for the prime membership..they'll be here in two days.  I'm looking forward to moving on from this habit...