Rise Up

A year ago my friend gave me a phone number. She said, "You need to call this woman. She has a daughter who reminds me of June."

I wrote the name and number in my journal and said I'd call.

A few weeks later, she asked me if I had called her yet.

Again, I told myself that I really should call.

I never called.

Yesterday I learned of the tragic events of a woman in Norfolk who took her own life and then took the life of her daughter, ending it all. All the pain, the misunderstanding, the grieving over what could never be. All the back-breaking moving of a body, the emotional planning, the Super-Mom facade. Gone.

This woman was the woman that I didn't call.

I sobbed almost immediately when I heard the news. Not because of guilt. But because the whole story was much too close to my heart. Because I never did meet her. Never shared a moment of understanding with her. And I knew she was a woman probably much like me. I knew she went to church, had friends, seemed happy and put a smile on for the general public.

I am assuming a lot here because I don't know her story.

But this I know.

We, as a community need to understand how hard it is to raise a child with special needs. Many times we, as Special Needs Moms look super confident and friendly, because how else would we want to appear if we were seen in public?

If I have actually gotten it together to enter the world with my very different and unique daughter, then you can bet your bottom dollar I want everyone to like me, to be my friend and also think I'm generally amazing and wonderful. I want you to think that I could meet you by the fountains at the zoo on a Friday morning for fun and games. I refuse to look like the needy, sobbing Mom in the corner with the wildly stimming and special needs daughter. Because who would want to spend time with me then? Who in the world would want to get to know me or my strange family then?

Sometimes I wonder...
How many more years can I enter the public realm successfully?
How long can I use the changing table in the public museum for my daughter who is five years old?
How long can I push her around in an umbrella stroller before I have to switch over to a wheel chair? The answer is...about 5 more pounds.
How long before she gets too loud to take to dinner, where her thrashing is too hard to control while she is slung over my knee at the dinner table?

So, I'm begging you all, on behalf of the special needs community to rise up and help the ones who seem to be happy.

Although you mean well, please don't empathize by saying that your child does the same exact thing. He or she may actually do the same thing...like, for example, chew on a toy. But it is a stage. He/she will outgrow it. My child will quite possibly chew on a toy into adulthood.

Although you mean well, please don't offer to help unless you really mean it. Don't say in passing, "Hey, I'd love to watch your child one day so you can go get a massage."...and then never call.  Actually, you can in fact, pick up the phone, call, and say, "Let's schedule a day where I can come and watch your child for the afternoon. Right now. Look at your calendar."

Although you mean well, please do not invite me to your house and say there is nothing that my child can get into, and that I won't have to watch her. I will. I promise. I will hardly get to talk to you. You may however, invite me to your house and watch, interact, hold and love on my daughter for a while I follow you around and we chat about things that matter.

If you see a special needs child in public, it is meaningful when you kneel down and greet him with a smile and words, knowing full well that it may not be reciprocated.

If I look like I need help, I needed it 5 minutes ago. Take one of my children's hands and walk me to the car, open the door for me, take a bag, fill a plate, feed my daughter.

I know you mean well, but please don't recommend a new drug, book, therapy, food or vitamin that my child should or shouldn't be eating. I can assure you that I know my child well and I am doing what I believe is best for her.  I also know myself and what I can handle in the world of remedies.  I am busy being a good Mother. Cooking meals, cleaning the house, reading books, wiping butts, potty training, folding piles of laundry. Can't be therapist, teacher, friend and doctor too. I know there are moms out there who do that. I'll admit to you right now that I am not one of them.

If you MUST recommend a remedy, pray about it for six months and then if you still feel the urge to share some info with me, then by all means, share it.

Please do not compare my child to other children with special needs. Do not tell me that you know of a child who didn't talk and all the sudden she is talking because she did x, y and z. Not helpful. One of my attendants said it best. My daughter has something called elfism and they are still trying to figure out her treatment plan.

When you see a child out in public who has an outburst, try not to stare or judge the Mom. I know it's hard. I do it too. You have NO idea what is going on with the child or the parent. You know what you can do? Pray for the Mom or Dad. Pray that he or she will have patience in dealing with the situation.

Do what one stranger did. My husband was at the beach playing with my daughter in the sand and water, obviously struggling to keep sandy handfuls away from eyes and mouth.  The stranger pulled my husband aside and said something like..."I see you. I see you loving on your daughter. Thank you and bless you".

I want you to know that I am not necessarily speaking of my general experience...although, all of these things have happened to me.  I have had an amazing support system of friends and family and feel completely blessed most of the time. But other times, I grieve for my life without a special needs child, or I can certainly be at my breaking point. I am the Mom who has to be "on" at all times emotionally. Many people are watching me. My kids, my attendants in my home, therapists in my home, educators and social workers in my home, friends and neighbors in my home. By the end of the day I can be so drained from just being Super Mom. Especially in the Summer. Especially. 

Thank you. Thank you. Thank you for those of you who love my June bug on a regular basis. You are pouring in, friend. And filling up my cup. You are.

East Beach, July 27 (by Kim Olson)