Why We Will Never Stop Going Out in Public

I see posts and articles frequently about public outing nightmares with children with autism.  I relate to almost every single one of them.  I have noticed that most of them aren't about a meltdown at Disney World or the park, it's almost always the grocery store or some other mundane outing that isn't a nice to have, it's a must have.  We all have to buy groceries.  We all have to drop our children off at school.  We all have to go to medical appointments.  The list of have-to-haves goes on and on.  Lining up childcare every time we have to do one of these things is just not realistic and can get very expensive.  Not only that, but some of our children have such severe separation anxiety that leaving them with someone is equally as traumatic as an outing.

We have the issue that anytime we go into a store, our son gets highly anxious about the loud speaker and the beeping at the registers.  So much so that he usually throws things when it's time to check out, or covers his ears and cries when they use the loud speaker.  He also gets very upset if there is another child crying (even if that child is three aisles over) and it can send him into a tailspin from which we cannot always recover.

With all of these problem behaviors occurring frequently when we go out, people outside of our world might wonder why we ever go out with our children if it isn't completely necessary.  Why do we subject ourselves to the stares and comments that cut so deep.  Why don't we, for instance, leave our son at home with one parent and the other parent can take out the other two?  Why don't I always do my grocery shopping while all three children are at preschool?  Why do we attempt the park when we know the end result will probably be dragging a kicking and screaming child to the car?

I know our son would be perfectly content to sit in the living room and play with all of his favorite toys over and over again.  His anxiety would be next to nothing and his overall mood would improve.  When we were home sick last week with very few outings and next to no transitions our days were nearly meltdown free.  So why don't we homeschool, get a sitter for all of our necessary outings, and stop all of our therapies?  There are a few reasons we make the choice not to lock ourselves up inside the house and avoid the new and unfamiliar all together.

First of all, staying shut away is not an option in the real world.  If we expect our children to mature and learn coping mechanisms they need to practice.  If we expect them to be able to go to the grocery store and buy food for themselves someday, we cannot avoid noisy places all together.  We have to work through the experience, even if it does appear to be disastrous to onlookers.  Actually, sometimes our outings might look like disasters, but were ten times better than the last one and we bask in the joy of that progress.

Another reason we will never stop going out is because our children (both our neurotypical children and our son on the spectrum) deserve to have fun too.  Don't get me wrong, we plan our outings very carefully and generally try to work them so we don't have much waiting and to make it as predictable as possible.  But even so, we cannot plan for every circumstance and if we have to wait a little longer than planned or go a different direction, you might have to witness a meltdown.  But it's worth it.  It's worth it to me to chance that he might cry and scream because we are having to leave the zoo after we have already walked through it twice if the benefit means watching him jump up and down with excitement at experiencing a new animal.  It's worth it to me to get out of our house and see him have a better store outing than the last time or to see him try a new thing with his siblings by his side and enjoy it.

So there you have it.  We cannot live in fear of the next meltdown, otherwise our children would never experience the world.  We cannot hide our children in order to make the world feel more comfortable, otherwise no one will ever learn about or accept their differences.  We cannot stop going out anymore than we can stop living.  And we will never stop.

I'm Not Going to Lie: I'M FED UP!

I am going to try to keep this post from sounding like a list of grievances, but I can't make any promises.  I wanted to start this year fresh and have the most positive outlook for our future, but we are off to a rocky start and I'm mad.  I hope to turn this anger into something constructive and maybe putting it all out there will help.

First of all, to all of the rockstar ABA therapists in this God forsaken state: Thanks for Nothing!  So not only did I fight for your rates to not be cut by TRICARE, but I was quoted in one of the articles that painted the Pentagon into a corner, and kept your rates as is and helped to raise awareness on the importance of ABA services for military families with children on the spectrum.  Since then, one of you showed up late or cancelled nearly every appointment and has refused to listen to our input which pushed us to look for other options.  Another of you, said you would meet with us and could give us four hours a week and then called the morning of our assessment to tell me you would no longer be providing services to children in this area.  Another of you, accepted my son as your patient and had us switch over all of our authorizations only to call us the week we were supposed to start services to tell us you moved back to your hometown for personal reasons.  What??  Who are these people?  I am beginning to get the feeling that this profession has absolutely no accountability or standard.

To the great state of Alabama:  So how is it that you have one of the highest percentages of children with disabilities of any other state in the country and you have the worst services?  How is it that a state with so many special needs kids does not deem it necessary to have any type of special needs preschool education option?  How is it that you can still be dragging your heals on mandating health insurance in this state to cover autism services?  How is it that you can pay your high school football coaches over $100,000 a year and you can't pay special needs teachers and therapists enough to stick around?  Are the leaders in this state so hostile to education that they are blind to all of their shortcomings?  I told you, I'm mad.

To the Government:  Thank you for sending us somewhere where our child has regressed and we have no options for decent care.  I am so glad we did Occupational Therapy for years, only to be sent here where we were waitlisted and then had services for two months and then were waitlisted again...awesome.  I also appreciate when I call to ask how on earth it was okay for us to be moved here and beg your staff to give me more options I am told this area is just really lacking....really?  I hadn't noticed.  I could write an entire post on your military health insurance issues, and how children on medicaid are often getting better services than my child.  Or how providers at our potential assignments have told me already they aren't even taking on new TRICARE clients because TRICARE pays so poorly and inconsistently.

To our Pediatrician:  I don't know how your practice can continue to operate with how poorly it is run.  For me to have to call everyday for three weeks to beg for a referral for my child to be able to see a psychiatrist because you don't feel capable of prescribing needed medication is unacceptable.  And the fact that I only got through to talk to an actual nurse on one of our very worst days and I was only put through because I demanded it and you could hear my child screaming in the background is maddening.

To Everyone who claims my son is growing out of or will grow out of his autism and that this is just a phase:  My God, I hope you're right!  I don't know why I am worried about therapies and services at all, he just needs to mature, right?  I don't know why I have spent hundreds of hours traveling and in waiting rooms, I'm sure that has nothing to do with why he is verbal or why he can manage himself socially when in a preferred environment.  I am so glad he is four years old and can finally eat with a spoon without getting food all over himself or the floor, I am sure that just happened, forget the months of therapy and the countless meals of hand over hand help with utensils.  He's just a little quirky and hard headed?  Are we talking about the same child, because I'm talking about the child who I had to literally drag and carry out of the house this morning kicking and screaming because he had to go to school today, the same school he did totally fine at yesterday.  If you are not taking care of him 24/7 and witnessing the struggles day in and day out, if you are not an educator, if you are not a medical provider, you can keep your diagnosis and opinions to yourself.

All of this being said, in the worst state, with some of the worst providers and worst availability, we are fed up, but we don't give up.  If we had given up we wouldn't be trying a new school this semester, I wouldn't have spent hours on the phone this morning trying to find more providers, I wouldn't have fought that boy out of this house this morning so he could receive his district services, I wouldn't be pushing the baby's nap this afternoon so we could make it to Speech therapy without childcare.

And he hasn't given up, he has regressed in some areas, sure, how could he not?  But there is a light in his eyes that always shines bright and on his good days, he can do anything.  When he is surrounded by the things he loves and the setting is right, he can make gains and have conversations and say sentences I never thought he would be able to say.  His favorite movie to watch is Planes Fire and Rescue.  And even though I have heard the movie a thousand times, until he was singing the soundtrack the other day I never heard the words.  While I admit this post has been more negative than positive, I leave you with this:  He will still fly.

"Still I Fly"

There' a time in your life

When the world is on your side

You might not feel it

You might not see it

But it surrounds you like a light

Makes you stronger for the fight

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

Still I fly

Feel the wind all around

All the courage to be found

Who knows what's out there

I know I'll get there

Oh off into the sun

I know I'm not the only one that's

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

Still I fly

Still I fly

Breathe it in

I'm gonna shine

It's my moment

Gotta live and live it right

I'm flyin

Flyin so strong

I'm movin'

I'm movin'

I'm movin' on

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

~Spencer Lee