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.

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!


Today we watched a video with Rachel of a child having an outburst. It looked a lot like her behavior, and she stared and stared, even after the video was done. 

We asked her what she was thinking, and she said “about the spiders in his brain and I have them too.”


Anyone else’s kids try to communicate what they’re going through when they lose control? How do you decipher it to help them?

Sad for a Minute

Our lives follow certain patterns. Everyone sets up their own families and fall into different patterns, but they are there. Some patterns are pleasant, some are unpleasant, and some are both. 

This happens with our “typical” children, as well as our special one. So many life steps are bittersweet, aren’t they? You fall into a life pattern with school: first preschool, gauging their needs and how to best help them fulfill their own potential. Then you start over again in elementary school, middle school, high school, each with its own challenges and achievements. Then college, and if you’ve gone with the flow all the previous years, and they’ve reached the point of confidence and independence, off they go! It’s such a dichotomy, You want them to stay with you forever, always be close to you, and you feel sad at every new step that they are growing so quickly. Yet at the same time, you are doing everything in your power to get them to that point, and you couldn’t be happier or prouder, or sadder, on that day you drop them off and they barely even look back when you leave! 

As parents, we know those bittersweet feelings, but the wonderful can outweigh the sad and make it all worth every minute. As parents of a special child (I do not call her special because she is different, I do it because she IS special!), the patterns are different within our own family. The achievements we celebrate are different, the way we teach is different, and, most of all, the patterns we fall into and have to learn to work with are different, not only from those of our other children, but from most families who will never share our experience.

Parent’s of typical children can pretty much work within well-established parameters of typical childhood development. Of course no child is the same, and a good parent takes each child as an individual to gauge what they need at any given stage of development. But you pretty much know what the next stage is going to be, and when to expect it.

Not so with our special ones. One of our “special” patterns deals with epilepsy and EEG activity. Rachel has had the same pattern since she was a year old. We see seizures, her EEG is a mess, we’re told no one has any idea when or how much she will progress developmentally, we get her on medication to control them or she “outgrows” them, her EEG clears up for a while, and we see new developmental milestones and understanding of concepts we didn’t know she would ever understand. Then we try to cram in as much enrichment as possible, until the next seizure, when it starts all over again, often with years in between.

Each one of these cycles is bittersweet. We are thrilled that she is growing, that she is grasping concepts and developing her sense of humor. We are thrilled that she is able to learn new things, because the things she learns make her life fuller and give her more to be happy about and enjoy. Like when she had her last developmental “spurt,” she learned to type and copy and look up things all by herself on the computer. What a sense of freedom she must feel, finally being able to see things she found interesting and fun! (Kidzbop, YouTube ventriloquists, living statues, and looking up bugs she sees outside lol!) And she learned how to work the digital cameras and recorders. What a wonderful way for her to express herself and for us to see a glimpse of what’s inside her!

But with a greater understanding of the world, and with growing up, there are things that make us a little sad as well. She is 20 now. Last October, we had her in the hospital for a week, hooked up to electrodes. Seizures had once again showed their ugly face, after four years of quiet. Epilepsy is insidious. We discovered where the problem was coming from, got her on the right medicine, and she’s been seizure-free since November! 

With this new spurt comes new questions, new hopes, new dreams. She is older, and although she functions academically at a first grade level, she still has the attitudes and outlook of a teenager in many ways. She sees her brother, who is only one year younger, driving and working and going off to college, and wants to know why she can’t do those things. She talks to other teenagers in her school (it’s all special-needs), and they talk about having boyfriends, getting married, having jobs, having their own houses, and, yikes, having their own babies. She is a woman, and she is becoming more aware of what she doesn’t have.

That is the bittersweet part. As much as we strive to enable her to have the life choices and independence she wants, it brings with it sadness that she can’t have everything. I never waste a minute wanting anything for her that she doesn’t want herself. I don’t wish she could do all the “normal” things other people do, I wouldn’t disrespect her as her own person like that. I would never presume to tell my other kids what they want or what they are missing based on my own ideas of success!

But how do you answer those questions? Driving is a little easier. She knows you can’t drive if you have active epilepsy, and she’s never known life without it, so she just says okay. Her own house isn’t even that difficult, because she doesn’t really want to be on her own with no one to take care of her or look out for her, keep her safe and warm and fed, and besides, she knows we are happy to have her right here with us. How do you tell your daughter that she should never really have her own baby and be a mom? 

When I told my friend (another special mom) about Rachel’s questions and plans, she summed it up pretty well. She said “Special needs parents – eternal dream crushers.” Of course that’s not what we are, but that’s what we feel like, always walking the tightrope over what they need to keep them safe and taken care of, and what they dream about. Always knowing that there are things they are dreaming about we will never know because they can’t express it in words.

So you are sad for a minute, and then you keep pressing on, because if there’s one thing special parents are, it’s pragmatic. You have to deal with the situation as it is, not how you wish it were, or how you want it to be. And I’ve sharpened my distraction and redirection skills immensely over the years! And I’ve accepted the responsibility of making her life the fullest and most enjoyable it can be for her, that is my job, so that hopefully she will never feel she is missing out on too much. And I tell her she doesn’t have to be like everyone else, because she is so special she is already better than most. And I truly believe it!