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. 


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!

Who Really Matters? Support v. Attack

I’ve had a long week! I hope everyone else’s is going somewhat smoothly! Finally got Rachel over her cold and to the point in her routine where she actually gets up and on the bus in the morning without too much resistance! Thank Heaven for small blessings, right?

I think one of the reasons I started writing myself is that I’ve seen other blogs fighting with each other, I’ve seen too many defensive and judgmental people attack each other, and then say that they’re here for support. I can see getting passionate about a position. I can even see defending your position. But to actively go after someone you don’t agree with because they don’t have the same feelings as you do about a very personal and lifelong journey that is their own? No, you are not here to support anyone, and if people can’t come to you with feelings they need to work through because they’re afraid they will be yelled at for having them, you are doing more damage than good, for them, and for the cause. 

Which would all be fine – after all, it’s your blog, your feelings, your passionate stand – if you didn’t actually seek out and attack opinions and feelings with which you don’t agree. Being an advocate for your child does not entail going after the feelings of other parents, all of us are trying to work things out the best way we can with the resources we have. And just as much as you get outraged that people think all autistic children are the same and don’t accept them as individuals, so you are doing the same to the parents. We are not all robots who flick a switch and turn on an “autism mommy” program when we hear the diagnosis. We can’t all deal with things the same way. As much as you resent people expecting you to train your child to be like them to be accepted, so you are not accepting other parents who are not exactly like you. Frankly, I think to be that defensive, intolerant, and judgmental, you have to have some insecurity and anger issues going on yourself. We come to know other autism parents (and in my case Infantile Spasms, epilepsy, and MR parents) because sometimes we just need an ear that can understand, we can get enough intolerance and attacks from the rest of the world to last a lifetime.

That being said, I still love this blog, it’s free therapy after all! And I still love everyone on here. I learned long ago not to put any stock in anyone who would gain satisfaction by making you feel bad, or worse, and I wouldn’t listen to a thing that comes out of his or her mouth. After all, it just gets them all the more worked up to know they don’t matter. Being nice is the best revenge lol!

I don’t know where that came from. I was going to write about the pattern of our life today, something we’re going through right now that made us a little sad all over again. But it can wait until tomorrow. Today I will just be thankful for all the wonderful, supportive people out there, the ones who do matter. And for all the wonderful things I get to read and process and be inspired by, thanks to all of you!


I Won’t Be Diminished (I Am Not A Robot)

I have seen so many self-righteous and judgmental people on blog sites and social media. I’ve seen people who are on the spectrum, people who have diagnosed themselves as being on the spectrum, people who claim to advocate for those on the spectrum, and other parents who quite obviously know better than you what you should think, feel, do, etc. etc. etc. I have seen fights over tags, over articles posted. I have seen people screaming not to invade their “safe space,” then invading your safe space to tell you what a horrible parent and human being you are for having your feelings. I’ve seen people attacked for being human, like anyone who would have feelings about something they didn’t sign up for but threw their whole lives into when they were called to is somehow selfish. I have one thing to say about those who expect this journey to be all about my child with no emotional baggage being packed in my own life: I am not a robot.

I did not come pre-programmed with a set of adaptive skills that meant there was no adjustment necessary when I sat in the doctor’s office at Children’s Hospital for the first time when they called the social worker in to tell me that my child was very sick and would lose her skills and most likely be intellectually disabled the rest of her life. I did have to grieve the child I thought I had, and the letting go of the hopes and dreams I had for her. I did have to live, experience, and let time pass as the mother of a disabled child to get to the point where I could see and appreciate the wonderful uniqueness of her, and feel fortunate to be one chosen to experience life with someone who has taught me more than all of the rest of life put together ever could. 

If I had not concentrated on the negative issues when they needed to be fixed who would have? Who would have quit their job and farmed their other children out to family members for experiences I couldn’t give them and researched every medicine and therapy and diagnosis that came our way? Who would have stayed up every night counting seizures, changed diapers for 7 years, given up their house, their money, their marriage for more than three years, their other children’s sleepovers and sports and birthday parties? Who would have given up job after job when she needed me and any hope of a career to become the unpaid caretaker of an adult with a disability and learned to find the positive and good in that? How would I have ever worked through the negative feelings I had to have as a human being if I had not acknowledged having them? 

When my daughter and I were younger I belonged to so many support groups it felt like it was my job. I, for one, am grateful that we now have the internet and online support groups and places where we can feel safe and understood from our own homes. Even if no one ever reads the blogs I write, I am grateful that I have a way to say what is on my mind now and be able to work through the feelings and get them out. I am as much of an individual and just as much a human being as my child, and my journey is just as relevant and my feelings just as valid, and they are not the same as hers, or my husband’s, or my other children’s, or anyone else’s. 

Everything is not a battle of self-righteousness. I am strong, experienced, adaptable, and diligent. Every day of my life is about my child. This is MY safe place, and I won’t be diminished in it.