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Tuesday, February 7, 2017

Invisible Jobs

Dear Autism Moms,

In case no one has told you lately, I see you and all of the invisible jobs you do. The rest of the world, and maybe even to your immediate family, may not "see" all that you do. They are so used to you to doing all of "the things" they don’t even have to think about. I see you making their lives seamless. There are no ragged stitches, thread hanging down, disasters of “what happened here?” because you make all of the details happen. 

I see you trudging to the grocery store so that the refrigerator and cupboards are filled with everyone’s special, favorite foods, while you have forgotten what you even like anymore. Except, wine. You know for sure you that you still like wine.

In fact, as long as everyone else eats and you have wine, your family gets to live to see another day. (Okay, so maybe that’s just me.) 
*So not just me. 

I see you negotiating that Individual Education Plan, year after year, after year, without being paid a dime in attorney’s fees. (Although, you may end up spending attorney's fees at some point.) All while educators are telling you that you’re being overprotective, coddling and asking for too much. Hopefully, your husband is sitting next to you during these meetings as the "voice of reason" because they all think you're being emotional. Even if he's not with you, you get it done. 

You make sure that your child’s educational needs are met while fighting against a system that would prefer to keep them inside of a well-contained box. 

I see you calling and e-mailing and meeting with teachers and administrators, fighting to make sure your child is fully educated at the highest and most inclusive level possible. You see their potential to be the most functional, independent adult and you will kick anyone’s ass who gets in the way of that. 

I see you when you have to break it down for the doctor. Despite their degrees and training, you know your child better than they do. You know what’s working and what is not working.  I don't care what the label on the medication says. You are not intimidated by some bully doctor who tries to insist that they more than you do. You are the expert when it comes to your child. (Never knew you would have to know more than a doctor when you became a mom, did you?) 

I see you doing the research to find alternatives, therapies, vitamins, supplements, and diet changes that can possibly serve as a complement to traditional therapies. You work tirelessly to do anything that could make the road to a productive life for your child a little more clear. 

I see the anguish in the tough decisions you make to give them the pharmaceutical medication, even though mixed emotions doesn’t begin to describe how you feel about it. Oh! And the pain when a medication trial goes wrong! It kills you. But you have many lives and you are so much stronger than you ever believed you could be.  

You do everything within your power if there is a minuscule chance that it will improve the quality of your child’s life. You make tough medical choices for your child despite possible stigma and the judgment from extended family who have done zero research, and yet they have strong, unsolicited opinions. 

I see you behind closed doors, comforting your child who is making threats of self-harm because he or she is miserable, depressed and tired of feeling different. They are tired of feeling alone in a crowded school. You put on the brave face, assuring them that everything will get better, even though you have no idea whether or not it actually will be. 

I know your secrets --that pain you feel when days, weeks, sometimes months go by and you have not seen your child smile or laugh. The rest of the world has no idea that a child “not smiling or laughing” is even ‘a thing.'

You will give anything just for the possibility that their eyes will light up and they will feel that innocent joy, that all children deserve to experience. 

I know that at times, your job feels thankless. When your children blame you for everything that goes wrong. You are their safe person. Your unconditional love makes them feel free to take out their frustration with you. You hear all the yelling, the cursing, the blunt, unfiltered feelings and opinions they have about everything. 

I know you feel guilty when you want to cover your ears, roll your eyes, or yell, "Enough already!" Because you've heard the same question or statement nine hundred times in a day. Not to mention the one thousand times yesterday. Here's a hint: Don't! Don't feel guilty. You're doing the best you can do, and more than the average person could.

I see you trying your best to mold them into loving, caring, people. 
I see your frustration when despite your teaching and example, they refuse to listen. They are still uniquely their own person. You can not control their every thought. You certainly can’t control the words that come out of their mouths. 

Here's a little secret, between you and me. Don’t worry. They are fighting you every step of the way, but they do hear you.  Something is seeping into to their stubborn little brains and that will become a part of the fabric of who they are as adults. They just have to come to the point where they believe that everything you taught them, was originally their idea. 

Oh! And about the judgment passed that you are “not disciplining them enough." You are blamed for their behavior. (You even blame yourself at times.) Please realize that you may be the only person on earth who sees the pain behind the behavior. You know what they are trying to communicate through the behavior. You are their mother, and you would do anything to take some of that pain away. So screw the judgment! And don't let it become a recording in your head. 

There are days, when even though you know that their frustration, yelling, screaming and yes, maybe they have even hit you. (Gasp! I know. No one is supposed to know about that. It's okay, we're all sisters here. We don't have to pretend that this never happens.)

Remember, it's not about you. That doesn’t make it any less real. It still hurts. The painful words spoken in the heat of anger and frustration can be the worst daggers to your heart. 

When they become teenagers, it may even begin to feel like an abusive relationship. You are constantly fighting a battle between your head and your heart.

You’re exhausted from lack of sleep. The wee hours of the night find you worrying about every detail of their lives. Sleep deprivation becomes the norm for you. You can hardly think straight. Making simple day to day decisions has become a major chore. 

I see you. I know how hard this journey is on your marriage. If your marriage survives, I congratulate you! You have beaten the odds. This road is rough. You only have so much energy and your high-maintenance children can drain you. Sometimes it may feel like a tug-of-war between your relationship with your husband and meeting the needs of your child. We know who wins that war most of the time. 

Even though you are married to a wonderful man, there may still be moments when you feel completely alone on this journey. No one can see your life from your unique point of view, not even your partner. There isn’t enough time in the day to communicate the worries of details about your child’s life that run through your head on a daily basis.

I am willing to bet (and I'm sure I'll get slammed for this) most husbands/fathers have no idea of how much you do and how much mental energy it takes to do it. (Maybe you can have them read them this letter, to give them an idea.) 

If your spouse is no longer in the house, well hot damn! Congratulations! You are the bomb! You are climbing a very steep mountain, and you're doing it alone. 

There are advantages and disadvantages to single-parenting an autistic child. I pray that you have a support system to give you a break.

I will say this, single-parent autism mamas...

You are strong! You are resilient. I salute you! I thank you so hard! You deserve your place in heaven that is already laid out for you. Try not to get there, sooner but later. Please, take care of yourself with intention and purpose. You may consider this letter a prescription of sorts, to show your friends and family so they will give you a day off where you can do whatever you want, even if that is just SLEEP!

As a mother, you and your child were once connected by an "Umbilical Cord". For most of us, that unique connection never goes away. We literally feel every ounce of pain that they go through.

As the mother of a child with autism, you are a part of a unique club. 
I see you. 
I thank you. 
I am you. 

Love, 
Karen 

p.s. 
Autism Dads -I don’t mean to leave you out. Of course, you serve an important and equally unique role in your child's life. I can not write from your unique perspective. Perhaps I can get Aspergers Dad (my husband) to do that here someday. 

I warn you, however, whatever he says about me --lies. All lies.  

p.s.s. Moms, 
This letter and the list of all that you do could go on to infinity. But of course, you already know that.