A Voice for Caregivers

A Voice for Caregivers

You know those awesome moments when you realize you are not invisible? Many feelings well articulated in this story. 


Reality Bites

I subscribe to a lot of autism support pages. I learn a few things, and I always hope I have some wisdom or experience as the parent of an older child I can humbly offer in return.

Lately I’ve been seeing question after question about behaviors. Specifically, parents of young, and sometimes very young, children asking what they can do about safety, melt-downs, and self-injury. “I’m afraid he’ll hurt himself, I can’t take my eyes off him for a minute, what can I do?”

I can’t bring myself to reply to this kind of post. How do you tell someone get used to it, this is your life! And still manage to be positive and supportive? My life has not been easy. No, my life has been hard! No matter how much therapy or what kind your child gets, no matter how many distractions and holding maneuvers you master, no matter how many blaring alarms you put on the doors, your child is probably still going to get hurt. Or hurt himself, or you, or someone in the vicinity that’s close enough to come in contact with their feet or their teeth or the object they’re going to throw without warning. They are still going to escape your ever-watchful eye, when you’re in the bathroom, or look away to pay the cashier, or check the price on something. Hopefully you won’t have to sprint through a yard at a picnic to keep them from running off a cliff, or have the whole family searching neighbors’ backyard pools or the lake to make sure your baby is didn’t get to them first (speaking from personal experience *shudder*). But things will happen, no matter what.

And you can never fix enough things to keep them totally safe. Alarms on all the doors? They learn how to open the windows. Put a fence around your yard? They learn how to get out of it, or climb over it. Put down two carpets to keep them from hurting themselves in their room? They start pulling the chair rails down and eating the carpet padding.

I’m sad to say, the only thing that keeps our kids alive and healthy is us. Us losing sleep so they’re never alone, even at night. Us being with them everywhere we go because no one else would react like you would in an emergency and know the signs that one is coming. Us leaving places before we would have and leaving carts full of groceries in stores to chase them outside when they bolt. Us knowing within a minute that they’re gone and running out the front door to find them before the unthinkable happens.

It’s a thankless job, for sure. Your other children sometimes resent the constant attention your special child has to have, and the fear that comes with living with constant volatility. Most of your family – even your spouse – and certainly not the rest of the world, will ever know how much you went through, and what a miracle it is that your child is alive and well! So, yes, you will have to do exactly what you are doing now for years – and years. Sometimes the unfairness is totally draining, not that you have been given this special child to keep safe, but the unfairness of no one ever knowing how you did it and giving you your appropriate super-mom props. And when you can’t work because of all this, even looking down their noses at you because that’s “all you do.”

So I empathize with you, the mother of the three year old, the five year old, the seven year old. I empathize, but there really is no answer except to keep doing what you’re doing, because it really is all up to you. And as someone once told me, you shine like a star in a sky full of “normal” parents. So hold your head up high and learn to sprint!

Just Info

Just Info

My daughter was on ACTH first, it was dangerous and didn’t work. If it did for you, great, but in IMHO our kids are the last thing on the priority list. And frankly if you want to blame the free market or the drug companies, you are not admitting that they are married to the politicians and the government agencies. 

Amazingly, Happily Normal

A wonderful thing happened last night. At least it’s wonderful in my mind. I’m going to just tell the truth here. I know there are some who think it’s wrong to have certain views or feelings, and even if you do you’re not supposed to say them out loud, you might offend someone. I don’t believe that is helpful to anyone. If you don’t acknowledge your feelings, or you are not allowed to express them, you will never get past them. You will never hear other points of view that can help change your way of seeing things. How can becoming defensive and more withdrawn because you are afraid and feeling guilty lead to acceptance?

Last night my husband and I went to my daughter’s open house at school. The school is an all special-needs school an hour away from our home, so we don’t have the chance for a lot of face-to-face involvement unfortunately. Since this is her last year we didn’t know how useful open house would be, but she wanted us there so badly, and there was no way we were going to disappoint her.

I have to admit that the older she got, the harder it got for me to see the differences in what stage she was at and what she was capable of and the “typical” kids her age. It wasn’t that I wanted or needed her to change, but I was so sad about what I thought she was missing out on. My sadness became blinders, because I couldn’t see the fullness her life already had.

Something changed inside me over the last couple of years. As I saw kids who were disrespectful, mean, yelling swear words, making messes, and treating their parents like crap I realized I did not want my sweet, innocent, good-hearted baby girl to change who she was at all. I realized how blessed I was to still be called Mommy, still leave cookies for Santa, and to have a child who knew right from wrong and didn’t know how to be mean or disrespectful.

Two years ago I went to see my daughter promenade before the prom. I sat in the school cafeteria, in a room full of “disabled” children, and cried. I wanted so much for them to be accepted by “typical” teenagers, and to have normal dates and parties and proms. I didn’t know to feel guilty about it because I thought I was wanting it for her, I was sad for her.

Last night was amazing. We got to the school and she was so excited saying “hi” to all of her friends and hear all of them say “hi Rach!” She was so proud to give us a tour and introduce us to everyone. I never knew she was so proud that her dad was an electrician and works “every day and week for us”, and that she thought everyone else there should love him too! I saw her sitting with her friends in their classrooms smiling and joking. It was amazingly happy.

On the way home, my husband told me that he had been thinking for a long time about what I had been saying, and that I am right. Rachel is Rachel, and she’s Daddy’s girl, and she is perfect for just who she is. And I realized that last night not one sad thought entered my mind. All I saw were kids being kids, and roomfuls of proud parents. I realized that I was proud to be there, and that this world we were in was perfectly normal and perfect. I realized that no matter what we go through with epilepsy, or how difficult the behaviors can be that have to be addressed, we are now happy as a family, and we feel complete, and our normal is no different or less than anyone else’s. We just are, and we no longer would want to change a thing.

We Will Never Take the Good for Granted

I haven’t been writing a lot lately, mostly because we have been in crisis mode and I don’t like to get negative. During this time I vent – and I mean vent! – to certain friends who always just listen and make me smile. Then I keep going and doing what I have to do, or, I should say, figuring out what I have to do. That is 90% of the  battle.

Monday I had to call the bus company and tell them not to pick Rachel up for school in the morning. She was surprised that I did this, I threw a wrench in her pattern of acting however she wanted in the morning and still getting on the bus. Frankly, we didn’t know if we were going to send her back to that school at all. This is her last year, and I think she’s just had it. She knows it too well and knows how far she can go with behaviors and still be back the next day.

Well, Monday I had to explain to her that if she were going to fight me all morning, I couldn’t send her on the bus and to school anymore. I couldn’t spend all day afraid of a phone call that she had another particularly bad outburst that could hurt someone else.

We take it one day at a time, right? So I woke her up Tuesday and asked her if she wanted me to call the bus company again. She popped up and said “No, I’ll get ready!” When she was waiting for the bus I gave her one of those rubber wristbands to wear, and I told her whenever she feels like she may get angry, look at the wristband and tug on it. It’s working so far, thank goodness those things are nearly unbreakable! 

Of course nothing is permanent in our lives, or even consistent, and this new calm will probably only last for days or weeks. But that’s okay, because it’s my job to figure it out. But it’s also my job to make sure that I work through my feelings, and make sure I vent  enough that stay in good enough mental shape to take care of her! If she had an illness and needed help, I wouldn’t tell her she was on her own. 

In the meantime I am enjoying reading what everyone else is writing. And I am remembering that I am not alone, and that we are blessed to be able to appreciate the calm between the storms all the more. We will never be those people who take everything in life for granted, and I am thankful we’ve been taught to see how good the good is. We’ll never be those people who can’t enjoy life because they have no idea what they have to be thankful for!

Genetics and Epilepsy/Autism

Genetics and Epilepsy/Autism

This (Infantile Spasms/West Syndrome and Lennox-Gastaut Syndrome) is the epilepsy that attacked my baby so long ago. I wouldn’t care to take away the autism, or the intellectual challenges, I love Rachel for just being Rachel. 

I would, however, take away the epilepsy in a second! I have never spent a majority of my life asking why, but somehow a genetic mutation gives makes me feel some sense of closure. If they could tell me that was the answer, I could take it and walk away and never think about it again. She was simply made that way, and she’s the perfect Rachel!