Wednesday, April 3, 2019

Blue Hearts

Yesterday was Autism Awareness Day. Yesterday I wore blue to the gym, E1 wore a blue bow to school, and my Facebook feed was filled with blue hearts, posts about Autism, and pictures of children with Autism. There was an overwhelming amount of support.

Today is Wednesday and the world resumed to its previously scheduled program. School was the same, I wore my regular clothes to the gym, and Facebook looked like it usually does - pictures and posts of glorious bullshit moments because let's get real, only few and far between post things like "I am going to kill my kids or drink a bottle of wine - I choose wine because that won't result in jail time."

While I appreciate Autism Awareness Day, Cerebral Palsy Awareness Day, Down Syndrome Day, and all the other days to recognize and support our special needs population, I wish the support lasted more than a day.

We all hear the stories, read the blogs, see the few posts that some brave mom puts out for the world to see. But what we pay little attention to is the daily ins and outs of our friends' lives whose children fall under the special needs umbrella. I don't know one special needs mama that wants sympathy. I sure as hell don't want any. I do know special needs mamas who wish they could catch a break, wish someone would listen, and wish for once their kid had a good day.

From severe to mild there are struggles that require understanding. There is a lack of patience from others for the day to day. The parenting advice you're about to give doesn't work. Unless you're a trained professional, just shut the fuck up when your friend is venting. Listen. Don't talk. And when they are done tell them you love them, you are more than happy to buy them a drink (or 100), or just give them a hug.

Trust me when I tell you the mom whose child only eats six things has tried it all. You saying your child is the same diminishes the struggle. Your child will out grow it, theirs won't. Hell, E2 is a damn rock star in eating because after years of food therapy we do not bring food with us and she eats three vegetables. But make no mistake - there are numerous restaurants we don't go to because E2 won't eat anything there. She eats the SAME LUNCH every day. Please don't tell me to pack something else. It will throw off her routine and legitimately fuck up her day.

When you see tantrums from a child, know the mom is embarrassed and angry. They paid for countless hours of therapies and at this moment with a grocery cart full of food, the child has lost all coping mechanisms. This is normal in a special needs world. Compensation skills are gained and then poof! one morning they are missing. Hold the door for that mom, push her cart for her so she can hold her child, tell your own child "Everyone has bad days." Do not assume the kid is being a brat. Remember posting that blue heart and honor that post.

Please know we spend every last damn dollar on our special needs children and certain things are out of reach no matter how hard we try. Therapies, even when covered by insurance, can be $152 an hour! Don't believe me? Call Aetna. E2 needs physical therapy again and that is our cost. How do you maintain a childhood for the rest of your children if you need to pay hundreds of dollars a week in speech, occupational and physical therapy? I'm sure you don't have an answer, but on the 364 days of the year that don't require "awareness" this is what you should should be aware of - Families figuring out how to help one child while making sure the neuro-typical child gets that nero-typical childhood.

Perhaps you're thinking a special school would make life easier - for some it can. The average cost of those schools is 30k dollars a year.  We don't have to make that decision because E2 is doing well in public school, but if we had to pay it, we could not do it today. Yes, I could go back to work. That brings its own issues: morning care, after care, gas, etc - all of which cost money that was supposed to go to that tuition which may or may not "fix" everything. Special needs families are constantly caught between a 'is this necessary' vs 'can it wait' scenario. Unless you've been there, you cannot understand the guilt a special needs parent carries after making any financial decision. It's a world of robbing Peter to pay Paul.

Remember sibling rivalry is not the same when one kid is special needs and the other one is not. There is resentment, love, a lack of patience, love, frustration, love. It sounds the same, but it is not. You have one child begging for the love of the other and the love possibly not being shown back. You can have one child wanting the bond, but the other one tired of working so hard to create the bond. To then reason with either is a nightmare. One cannot possibly comprehend what you're saying and the other is tired of having the same talk of needing patience because their sibling isn't like others. It's a daily, weekly, monthly, annual happening. Siblings of special needs children carry a burden that deserves its own awareness day. Even in our home, with a child whose label carries the word mild, E1 has asked if she will have to take care of her sister when we are gone. E1 has awareness every day that gives her a view of the reality not always shown to the outside.

Special needs mamas need to celebrate the smallest of victories because they are huge in their world. Special needs mamas want a heart for: dressing oneself, brushing teeth, taking a shower, learning to tie shoes, vacationing, sitting still for 10 minutes without an electronic device, looking someone in the eyes, making a C on a test, making a friend, cutting their own food, learning how to use the microwave, being invited to a birthday party, learning to talk, walk, basically anything that comes natural for other children.  When you post that blue heart, you are celebrating.

Keep celebrating with us. Keep fighting for our children with us. Keep walking with us. Just keep doing it for more than one day.

Awareness days are great. They bring light to a topic that needs discussing. But when the sun sets on that awareness day and the sun stops shining on that day, don't let that heart you posted fade along with the light.




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