Friday, November 21, 2014

Max Supporting Our Troops...

To go along with Max's appreciation of all things "Officer" right now, we suggested he might like to meet some more officers who are in the military.  We were talking about how some officers have to go live away from their families for a long time to keep us safe at home.

Max agreed we should send them some treats from their home for the holidays.  We contacted his pal, and eye doctor, who also is a Brigadier General. He got us in contact with a local organization, Colorado Supporting Our Troops.   They were at the moment collecting supplies to send in stockings to the unit of Military Police from Colorado stationed overseas.

Max wanted to send chocolate, but we went off the list and loaded up on gum.  Our neighborhood pitched in and we had enough for all of them.

We had a few neighbors add more things to the shipment. 

Max wrote a letter for a new friend, and off it all went.  We think it will mean a new pal for him to write to.  

Contact Colorado Supporting Our Troops, or seek out a local to your area organization that sends packages to our military.   We can all appreciate their sacrifice. And for us, sending some gum to make them think of home is the least we can do.

Thursday, November 20, 2014

The hard days...

Max has been having some difficult afternoons this week.  It seems the clock hits around 4:00 o'clock and he starts fussing, crying, kicking and generally losing his mind for about 4 hours. We're in the middle of another wean of his seizure medicine...and it just makes him an emotional wreck in the late afternoon and evening.  You would think this would give me enough reason to gripe, but I haven't said much about it.  I don't say much about it, because I feel bad when I gripe about the hard days.

There is a guilt that is part of the parent of a special needs child gig that manifests in all kinds of ways.  They aren't eating.  They aren't gaining weight, because they aren't eating.  They aren't sleeping, or sleeping too much.  They cry all the time, or never make a sound.  They won't do therapy.  They won't let me brush their teeth.  They won't take their medicine.  These are all things parents of special needs children will understand.

But the guilt you don't often hear people talking about is the guilt that your kid is just being difficult. We feel bad to express that this life is HARD, and not the one we necessarily dreamed parenthood would be.  We feel bad to say it is EXHAUSTING to hear screaming and crying for hours on end. We feel bad to just want it to be bedtime already so they can have their sleeping medicine so there will be some quiet for a few remaining waking hours.  We feel bad to just let them cry, because we have tried absolutely everything, and nothing is working, but someone has to make dinner and do the laundry.  We feel bad because at least they aren't in the hospital, at least they're still here, at least they can cry, at least, at least, at least.

This guilt is because we're supposed to be super, right?  We're the ones who always feel grateful our kids are alive, and relatively healthy, and made some new, albeit small, advances in school or therapy this week.  That's what we're supposed to focus on, because we're some kind of saints who got an extra dose of grace to make it so we don't run away from our screaming, crying kids.

Sure, maybe something is brewing - a cold, a seizure coming on, a tooth coming in, an infection....but maybe, just maybe they're just being difficult.  Typical kids are difficult all the time.  We hear those parents say, "I want to run away." "I need a vacation." "I am going to ship them off to grandma's for the weekend." We laugh and nod our heads, we are those parents to with our other kids.  But, if a parent of a severely disabled child says that, we feel like they're ready to crack.

But I'm here to say, it's okay to gripe.  Vent.  Let it all out.  It's hard.  You're doing the best you can.

For now, you try to take some deep breaths.  Know the crying and fussing, and bad days won't last forever.  He will laugh and smile and make you forget the stress just minutes before.  We'll dust off our super parent capes, and keep on keepin' on.  Because that's what we do, and we do it well.

Or, I'll just meet you here. . .

And I get to go first, okay?

Friday, November 14, 2014

Santa's Little Hackers...

Last year around this time, we held a fundraiser for home modifications for Max.  Our friends, and family, and strangers gave, and gave, and gave of themselves to help make our lives a little easier. Our project would not have been possible without the kindness of you all.

This year, in an effort to give back, we have started a new organization called Santa's Little Hackers, as part of a larger organization, which is yet to be announced.

Our mission is making fun accessible to everyone by adapting toys for those who need assistance.

Max first started with switch adapted toys as a little guy.  In speech and occupational therapy he used the switches to activate toys to get an immediate reaction.  That reaction taught Max that when he presses the switch it makes the rooster crow, and later, when he presses a switch it makes his communication device talk for him.  
Max with his first switch adapted toy, a walking giraffe. 

Through the years, Max's toys have graduated from giraffes and roosters and lights turning on and off to jumping spiders and fart blasters.  One thing that hasn't changed, Max still loves to play just like every other 11 year old out there, he just needs a little more help to be able to play independently.

Toys are rarely designed with the needs of those with different abilities in mind. By making simple modifications to the electronics of toys, they can be enjoyed by children with limited fine motor skills and physical abilities.  

Through our webpage, word of mouth, and Facebook page, we are getting requests from all over the country to provide adapted toys to children AND adults for the holidays.  You might be wondering what is a switch adapted toy, and why are we making this our mission.

Most typical children can access a toy using their fine motor skills, pushing Elmo's belly to make him sing, or pressing a trigger on a Minion fart blaster to get a laugh out of all his friends.  For children and adults missing those basic functional skills, play becomes a game of a caregiver or therapist doing most of the work of making the toy work to activate the toy.  This takes the independence away from the individual lacking the fine motor skills.  When we place a adapted toy in front of someone who can choose when they would like to activate it by using a switch it gives them a level of control they wouldn't have otherwise.

This is Max using one of the toys we adapted for his birthday.

You can watch the progression of understanding he is making that happen by hitting his switch.  Prior to adapting the toy, we would push the trigger and laugh, and while Max would ask for more, there wasn't much he could do with the toy.  Now, he gets his toy and loves to interrupt any conversation lull with a big ol' minion fart, which ALWAYS gets a laugh out of everyone in the room. 

We aren't providing therapy toys.  We're providing toys to children to play with for the holidays.  All children, of all ages like to play with toys at their level.  That's why we're doing it.  

Yes, there are these toys readily available on the internet.  They are incredibly expensive.  One example is a very, very simple toy I found as I was putting our wish list together.  It's one of those animals you can see in toy stores that makes a noise and moves it legs.  It was priced at $20, and I could find it much cheaper if I bought it in bulk.  The next item on the Amazon search was the same toy.  Only it had a little cord hanging out of it, for a switch to be plugged into to activate it. That same toy with a $5 adaption raised the price of the toy by $60.  

The very people who need the most assistance with play, are the ones being taken advantage of because they need it.  We're trying to do our part to change that.  We are a family, who have asked our child's speech therapist to help us start this organization.  We want play to be accessible to everyone, regardless of ability.   We are accepting requests from individuals of varying ages.  We've had requests for toddlers, all the way to adults with developmental disabilities.  

If you would like to help out, check out our webpage to see what you can do.  If you know of someone who uses switches to activate toys feel free to request a toy for them on our webpage.