January 30, 2017

The Waiting Game

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:58 pm by autismmommytherapist

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Finally, a chance to breathe.

I know. It snuck up on you, didn’t it? It came to call after you’d gone through the eight million Early Intervention appointments and put his program into place, or through the six thousand evaluations that led to services at a school you hope is more than just “appropriate” for your daughter. You know about the “A” in FAPE because while not doing therapy, laundry, or taking your child to yet one more evaluation you’ve scanned the internet horizon like an eager addict, hoping for that next great hit that might somehow help your kid.

The diagnosis was difficult but at the same time energizing- the differences in your son have a name, and now you can do something, which cut through that insipid dread that’s been following you around like a remorseful ex. She’s on the “autism diet”, you’re giving her supplements, you’ve explored safe alternative treatments and made a plan to try a few. Her therapists and teachers are in place, you’ve even found a sitter you like so you can get the hell out once in a while. You’ve dotted your “I”s and crossed your “T”s, and today you find yourself for the first time in a very long time with a couple of hours to yourself. And it hits you, how you’ve put wanting to know your child’s future on a shelf so you can function. You know that ironically all your efforts haven’t been the hardest part- that’s still to come.

Now, it’s time to wait.

You may or may not be like me, a planner extraordinaire, which served me well as a former educator and even better as an autism mom. I admit I struggle sometimes to remain in the present, am always thinking a few steps ahead. You’re realizing you can’t really look that far down the road because he’s changing every day, making progress, sometimes taking two steps back. It’s too early to know if your eighteen-month-old son or four-year-old daughter will ever drive, fall in love, live safely and independently apart from you.

But still, you want to know.

Some people will tell you what you want to hear. They will compare your beautiful two-year-old boy to their second cousin’s boyfriend’s neighbor’s son who was non-verbal and is now at MIT. They will tell you about their other clients who present just like your daughter who are now fully mainstreamed, talking, and have friends. They may not be so positive, as in the case of my eldest son’s former therapist who laughed when I suggested he’d one day read. At the time, he was two years old.

He was reading complete sentences by four. And yup, still severely autistic.

There is no crystal ball you can look into for these answers, although you’d bargain your life for one. There will probably not be a single, defining moment like that one at the doctor’s office with the annoying florescent light bulb that will change your life, where you will know what the future holds for your child. You won’t know for years if your child will ever speak because sometimes it just happens as a teenager, along with all those changes typical kids go through too. If your child is in a self-contained class in kindergarten you won’t know if he’ll keep that placement forever, or one day shed his IEP. You won’t know if he’ll ever eat a vegetable.

Fortunately, some things aren’t as difficult to wait for as others.

You won’t know the answers to the big questions now, but I promise you someday you will. It may come gradually over time as it did for me with my oldest, realizing after years of intense therapy that despite his inherent intelligence he’d always need care. It might come in a watershed moment like with my youngest son, where his beloved pre-school teacher suggested he’d benefit from a partial day mainstreaming in kindergarten without an aide, citing the astounding progress he’d made in two years at such a young age.

And for the record, my sons are two of the happiest kids I have ever met.

No, for now you have to wait, and it’s hard, so hard. Waiting will lurk in the corner with you like that person you should really unfriend on Facebook, relentless in its tenacity. If you let it it will consume you, rob you of the gift of the present, insinuate itself into every corner and crevice of your life until the waiting, the not knowing, is all-encompassing.

Don’t let it. Don’t let the waiting, the worry, the anxiety envelope you if you can help it. Revel in what he’s accomplished, hell revel in what you’ve accomplished for him. Relegate the future to a back shelf, somewhere cluttered enough that you can’t spot it easily, and take everything day by day. So much will change over these next few years- struggles will be conquered, new challenges will present themselves. A goal you never thought she’d attain will eventually be met. Others you thought were so important will go by the wayside, and it will be okay.

You have the power, with how you choose to perceive things, to view this life as okay.

Know you never have to wait to share in this vibrant, caring community.

You are not alone.

 

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3 Comments »

  1. Beautiful and true. Thank you.

  2. Timothy Johnson sr said,

    What about all the waiting before the diagnosis,what about seeing the behaviour before the Dr’s and asking then and then saying its too early to tell, even better what about six months later finally getting the Dr to check after you switch Medicaid providers just to see this Dr spend the time on the phone with hhsc putting all the information in the system and calling the Dr and squaring it all up and then when the new Medicaid cards come in the one kid out of three that is actually going to be able to go there because someone didn’t at hhsc didn’t do their job right …..don’t know who because the woman over the phone took the info and seemed as if everything was done she was helpful and nice ……the Medicaid defaulted to a town 180 miles away with none of the providers that cover the county I live in how does that not catch their attention at all……. how can my coverage that I have to get all this paperwork to prove the money I make the bills I pay and where I live and all that other stuff ….have 2 kids registered in Harris County and 1 I. Milam County on the same case living in the same address and no one notice a red flag when they are cracking down on welfare fraud it doesn’t make sense, so you have to wait longer to redo the paper work and get it in on time and then the Dr isn’t accepting patients so the new one is horrible and takes a month just to be seen for an initial visit and the same day that you made the appt you ask the Dr’s for a medical release fill it out call the old Dr that finally referred you tell them it’s coming and they get it back to the new Dr same day and you think okay his records are here and the Dr should just see it and give you a referral no problem right soap month later you explain this to the Dr and they say schedule another appt so you try to plead with them because all they have to do is tell the nurse to go ahead and send in the referral that’s it and then a month later you call the hospital that the Dr supposedly referred you too and they don’t have it so you call the Dr and three days later they send it in and after another month of calling everyday the behavioral dept sets the visit for 10 months away my son was 16 months when I started noticing his symptoms I researched for two weeks and made videos and did the evaluation from the Internet everyday for a week and compared them took detailed notes on why I answered each question and compared then at the end of the week my son hit 16 of 20. Even after all that doing the legwork and everything and begging Dr’s and setting things up and explaining to each one how the last one didn’t do anything and this need to be expedited because he’s getting older no one cares and most resources on the big sites and major “advocates” are only available after you receive the diagnosis my son is will be 4 when he finally gets to see a behavioural specialist and I’m so glad that he finally will but where Is the help for poorer families and where is the compassion what happened to the oath the Dr’s have to take to do what’s best for the patient why do these people make so much money for nothing and why wouldn’t anyone just look at my son and feel compassion and do what they barely had to exert any effort to accomplish like sign a form that I had to fill out so they could fax it which had to be sent by them for it to be accepted ,which they could have done right then if just one person would have acted with urgency 3-6 months could have been saved but no this has to be dragged out so long and the places that have appointments for the next week that only do ASD diagnosis require that you pay up front (500$) so obviously it’s a recognized problem for it to be a cash business that does so well and only does diagnosis for ASD nothing else …………since when is a child’s future not worth it its not worth one person’s effort or signature but they can all stare at you kids and make faces and ask you to be quiet and get mad because he knocks things over or messes up the Pamphlets or strips to his diaper and all the other things he does because he can’t express himself or figure out how to sooth himself what is wrong with people and where are the ones that can and will help why can’t I go to the hospital ER AND explain this to a pediatric whatever who isbstanding right there with a pen in hand but refuses because it didn’t go through proper channels I did all the foot work handed it over to all the right people and got everything signed and made their Jobs to where they push a few buttons and they wouldn’t why there needs to be some type of indigent programs for children with ASD in place everywhere then we wouldn’t have late diagnosis of adult autism it would have been caught at childhood but no one cares I am a proud autism dad and I hope that maybe someone who has been through this and is in a position to do something doesn’t look the other way like the others


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