Yeah, It’s Hard

944559_10151500476161957_1676148834_nPeople ask me all kinds of questions about life with Xander, but the other day while chatting with someone at the dog park I was asked “Is it hard? You know, raising a child with Autism. Is it hard?”

Without even thinking about the answer I replied “YES.”

But when I thought about how to explain to this person, who does not have any children, why it is hard, my mind drew a blank. That was how I knew that I needed to write about it.

Raising people is hard. It doesn’t matter if your children are neurotypical or special needs, if you are rich or poor, if you are uneducated or a frickin’ child psychologist. IT IS HARD.

With that said, we have had to take some steps that I believe most parents will not have to. Knowing to take these steps came with time, and many, many, many meltdowns, assessments, and consults with professionals. For example, Xander’s sensory sensitivities due to his autism require
-Special soft lighting. Every room in our house has multiple light sources.
-Blackout curtains in the main living room and all bedrooms.
-Sound machines in all bedrooms.
-Soft and clean textiles in bedrooms and living room.
-Jumping stations in living room and bedroom along with a large trampoline outside.
-Crash mats in the living room for those heavy duty sensory seeking days.
-Large exercise balls available at any time for stretching and bouncing.
-Creams and lotions and deep massage to help ease Xander’s skin, when the OCD and anxiety had taken over and he scratched his skin off from ankle to knee on both legs.
-Tagless, seamless and soft cotton clothing whenever possible.
-A seemingly endless stream of specialty items like weighted blankets and stuffies, sensory bags, squish boxes, you name it.

Just to leave the house for a simple errand requires
-A visual schedule showing where we are going and the steps to get there.
-A fidget or small ball of playdoh for regulation while out.
-Can you say iPad?
-A diaper bag to hold this stuff all plus pull-ups, as Xander is a long way from being toilet trained.
-Constant verbal activity from me. Reassurance, direction, repeating after him, or even just singing to keep him engaged.

While at home Xander requires verbal and visual supports for every transition. You need a number strip that shows him how many minutes or bites or swings or whatever is appropriate to let him know a change is coming. Then you need to get his attention and tell him “first _____, then ______.” and ensure he is not anxious about it. If it IS something that causes anxiety you need to apply deep pressure to his legs or hip joints to keep him from picking the skin off of his legs.
Oops! Did you forget to say a number on the number strip? Maybe you thought you could pull one over on him? You just hit the OCD and anxiety jackpot! Your prize is a horrific meltdown that causes everybody in the house to end up in tears.
While consoling the baby (who is severely speech delayed and cannot speak or understand what you say to him) Xander unlocked three childproof doors and is now naked and screaming in the backyard.

It is 7:30 am on Monday and your husband doesn’t get back in town until Wednesday night.

It’s that kind of hard.

Raising Xander is hard because there is no room for error. It is hard because every parenting book I read while trying to conceive this beautiful little guy told me how to have the happiest baby on the block and my baby must not have read that book. Or any books. If anything he was too busy counting the pages while ripping them out and lining them up. It’s hard because I cannot, for one second, let my mind rest during the day because my child has no sense of danger or fear. It is hard because I am constantly in a state of heightened awareness that is fueled purely by caffeine because I haven’t slept through the night  in 4 years.

It’s hard because it seems like every single day I have to make decisions that no parent should have to make.
Do we need to medicate our 3 year old? Is his dosage too high? Too low? Is that new twitch a side effect? 
What type of therapy will work best for my son? ABA? Is my OT knowledgeable in Sensory Integration? Do we need more SLP time?
What treatment do we pursue next, if any? GFCF diet? Acupuncture? Advanced vitamin cocktails?

And the crippling….. Who is going to take care of him when we die? How are we supposed to save up enough money to ensure he is cared for in the future when I had to stop working so that I could care for the kids full time now?

We also can’t forget that every day there are appointments and therapies and daily household work! Plus who ever is in charge of dishing out challenges decided to bless our family with a big old smattering of anaphylaxis, so we have to watch every morsel of food that goes into his and every kid in a 50 foot radius’s mouth with an epi-pen within arms reach at all times.

So yes, curious readers. Raising a child with autism is hard. It is by far that hardest thing I have done in my life. But it’s not bad. There is a difference.

I love being so hands on with my children. Watching Xander and Damien grow and learn is the biggest success I could have ever wished for. I’ll often say that as a parent of a child with special needs our lows are lower, but our highs are higher. You will never see a mom get as excited over a child playing beside another boy as I will. You will not believe my tears of joy as I listen to Xander say “I” for the first time after months of speech therapy.

Yeah it’s hard. But I’m telling you that it is worth every beautiful and frustrating second. I would do it all again in a heartbeat if I had to choose, but I would try to barter in a little more time for drinking if possible.

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Kidding!
Kinda.

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6 Responses to “Yeah, It’s Hard”

  1. August 25, 2013 at 6:42 pm #

    I agree. Yes it is hard. But it is not bad. Sometimes, my daughter gives me great lines. But I do have to add–raising my daughter with special needs was much harder than raising my son. And I don’t really know if I’d offer to do it over again. (Lindsey is now 33). I admire those mothers who would. I envy you. Enjoyed this piece.

  2. merry
    August 25, 2013 at 7:12 pm #

    Well written as always Dawn. You nailed it.

  3. G.K.
    August 25, 2013 at 11:08 pm #

    You just described our life in so many ways__ and we have three other small children. I’ve stopped caring what I look like in public__ counting down the minutes aloud before we transition to the next thing (breaking down the last minute into four 15 second intervals), scooping up a five year old who is screaming and really doesn’t want to be touched (people don’t like crying babies, they really have no compassion for a crying five year old that sounds unnatural), having a child who takes his clothes off anywhere and everywhere, calling him by the names he insists upon that day (any name but his actual name, including Tinkerbell and Jesus). But my boy is special. He makes the most amazing observations and connections. I can make up a story for him and he squeals with delight when it’s good. He makes impressive sculptures. He has absolutely no aggression or malice in his soul. I wish there were more people like him and I’m proud to be his dad. I loved the list of things you’ve done around the house. Please list more if there are and show us some photos. Thank you.

  4. G.K.
    August 26, 2013 at 12:22 am #

    I failed to mention that the biggest stress and public spectacle I create is the constant hovering you talk about because my child has no concept of danger. Letting down the watch has resulted in so many hospital visits that for a while we had Child Protective Services coming to our house and following us around. Talk about scary. Really adds a lot of horrible stress to the whole dynamic, to understate the matter. I know I look like a freak and make people uncomfortable, but I have a more important job to do than to worry about that.

  5. August 27, 2013 at 5:17 am #

    I think posts like this really do help parents not in your shoes to have a better idea of where you’re coming from. No one should be judging another mother ever, but when you put it out there like this, I hope it makes it a a little bit harder for those who would judge.

  6. September 10, 2013 at 6:27 pm #

    My motherfucking e-mail spammed this, so I only just found it. You cover all of this so well. I’ll say this, though — Xander is a smart smart young man. He may yet surprise you in the future-care area. I can’t put my finger on it. I’ve never met him except through your posts, so it’s a guess and a sense at best. It’s got to do with your descriptions of his word choices and actions and the things I read in Temple Grandin and Carly Fleishman’s writing. That kid is in there. ALL in there. And he lives in an era when an increasing number of people on the spectrum are learning how to get that communication bridge up and running so that neurotypical people can step out of their boxes and hear. It’s still a neuro-neuro-typical world, but I think Xander is going to be one of those people who shatters the mold.

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