I try to be positive.
I try to be hopeful.
I try to act like I manage my life relatively well.
But when it comes down to it, if I’m being honest – I really hate autism these days. I really do. The past 2 weeks have been extremely difficult.
I hate that I feel like I don’t know how to parent him. I don’t know how to discipline him.
I hate that I don’t know how to balance parenting Cuyler with the other two. It’s not even a little bit easy.
I hate that Cuyler stims around, out of control of his body. I can tell that Campbell sometimes gets embarrassed. I hate that.
I hate that Campbell has to defend his brother against kids who make fun of him at the park.
I hate that Cuyler is so unpredictable. I don’t know what will happen with him from one minute to the next.
I hate having to drag him home in an absolute meltdown with all the kids staring. Or worse with all the parents staring.
I hate hearing that if I disciplined him better, he would get better. That makes my blood boil.
I hate that I don’t know how to get him out of a tantrum.
I hate that I don’t know what will put him into one.
I hate that he doesn’t listen.
I hate that he won’t follow house rules.
I hate that I’ve been his mother for 9.5 years and nothing about it has been easy.
I hate that 9.5 years later we are nowhere near where we thought he’d be developmentally.
I hate that everything we’ve tried has let me down.
I hate that we have NO MONEY because everything we do for him is out of pocket. No coverage for anything.
I hate that all he does is ask goddam questions.
I hate that he is starting to annoy his peers.
I hate when people tell me after just meeting him, they “couldn’t even tell he has autism!” Live with him.
I hate that everyday after school he has a meltdown because he wants to be a bus kid.
I hate that he won’t eat anything. We’re back to where we started.
I hate that my girls weekend away did nothing to recharge me. Walking back into my life was depressing.
I hate that I weigh the most ever have weighed. I hate that I am addicted to chocolate. I want to smoke so bad. Or drink. A lot. But I know neither are good choices…so chocolate it is.
I hate that he is so static. I hate that he screams when I don’t know the answer to a stupid, random, unnecessary question.
I hate that Sean gets mad at me when I lose my temper.
I hate that I have become the mother I never wanted to become. The yelling, frustrated-all-the-time, always-at-the-end-of-my-rope mother.
I hate that Cuyler can figure out my iPhone password. Then changes it on me. Then chats with my friends. Then changes their names in my contacts so I don’t know whose texting me.
I hate that my house looks like a shithole with stained carpets and writing all over the walls.
I hate that he did this to my kitchen plant when he was mad me yesterday. He’s never been destructive when angry. Now he is.
I hate that I don’t know what one year or 5/10/20 years from now looks like for us and him.
I hate that my son has autism.
I hate autism.
There. I said it.
Okay. Pity party over. Moving on…
The “She can handle it” is just bs, for “I’m not getting involved & I don’t care”. It doesn’t change. They never come to help. Family look you in the eye and say they love your child, but ask them to come teach them money or read him a book & their answer is NO.
They don’t get better, your life doesn’t change EVER, it’s the same everyday until you die. My life is the same caretaking it was 15 years ago. Someday I will be 65 and doing the same things I’m doing now. It is the fact it doesn’t get better, it doesn’t change, it’s depressing.
I hate autism
Oh Christine I hear you well! I hate it as well and hate pretty well all of the things you have mentioned lol although yes I think the one statement I truley hate the most is “Wow he seems so normal. You would never know.” Duh yep try living in my house 24/7!
If it is any help my son Joshua probably had the hardest time with everything between the ages of 8 – 10/11 I think it is partly due to the fact that the social dynamics really start to change in school around this age and it just puts more focus on how “not typical” are guys are. Other typical kids start to really want to fit in and being around the quirky guys doesn’t cut it.
Don’t get me wrong Joshua is almost 13 and we are hitting much more complicated issues with puberty and such but he does seem to have mellowed a bit and accepts that he is different and is so far okay with it.
Sigh. Don’t ever feel bad about hating autism, I do to and everyday offers new challenges – some expected and some unexpected he is lucky to have the family he does.
If ever you need to talk you know how to reach me:)
I HATE autism…
but,
I LOVE that Cuy has YOU as his mom, Sean as his Dad, and Cam & Eva as his brother & sister. You are all lucky to have one another.
I know it’s not said enough – but we’re there for you guys.
Christine, you are incredibly brave, tenacious and loving.
I don’t have a child with autism, but I have a child with mental illness…and I have felt many of the same emotions you list above. It’s so hard.
My thoughts are with you. Thanks for having the courage to be honest. You are a wonderful mom.
Chris- Brave to share, beautiful girl.
I can’t imagine how hard this is. We all think you are amazing- truly remarkable in all that you do.
It is ok to hate it.
Do you have a good support group of people with a child at the same age and stage as yours? Are they accessible on a regular basis. That is what I would need- is that possible for you?
You are so incredible. I get a lot of strength from your stories xoxoxo
I am so sorry that you feel so bad. I read you all the time and I think that you are amazing. Parenting is difficult at the best of times, I can not imagaine what it is like for you. Sometimes we just need to vent and I hope that it will get better for you. You are blessed with a wonderful family.
I hate it
I hate the invisible, lonely, isolated, avoided…always completely avoided feeling , of beig the mother of a child with Autism…helpless, “oh it’s her , she can handle it” where no one asks…invites, never stops by,
I hate it, sometimes feeling lke no one really gives a shit…
Hate feeling tired ALL the time,
Hate it
Every time I read your posts I think, “she has so much courage, determination, and stamina” and this post has not changed my point of view one iota. I can only imagine what you must go through day in and day out. Strength to you.
I once asked “what do you do when you don’t know what to do?” The answer? “Just Keep Swimming.” NOT the answer I was looking for but it makes sense. You are allowed to hate autism, your life, your husband and yes even for a minute your child. You are allowed to have all those feelings and so brave of you to not only admit them to yourself but the world at large. We are human. You are doing all you can do…and that’s all you can do. 🙂 Hugs
Hugs Christine. I have no idea what you are going through. I like what Kelly said also – you are obviously doing a great job. It must be so hard. Take breaks when you can – like a trip to the Sausage! 🙂
I read your post and shed a tear on your behalf. I think for me, it brings awareness for me about autism that I never had before. I can’t imagine your frustration and I can’t truly appreciate how much that you have to go through. Like Sara, I will remind you to read Kelly’s post over and over again. While in the middle of shear and utter frustration you may not be able to see the great things that you have done for your son and how much it has made him a better person.
As a parent of four relatively healthy children I can’t begin to understand the challenges of autism. But having read your post I will try to be more sympathetic and supportive of those that have autism and the parents who use so much of themselves to make life better for their child.
You are a blessing to your entire family and to those who read your blogs.
Hang in there.
I love what Kelly said Christine…..and read what Julie said – over and over again. You are helping SO many people with your honest feelings about autism. It SUCKS. I HATE IT too. I do. I do. And there is no denying it. You live with it everyday just as Cuyler does. Why shouldn’t you have days/weeks/months of I hate it. You’re entitled my friend. Eva and Cam will be better people because of all of this. I have zero words of wisdom except don’t add guilt to everything else you’re feeling. Let yourself feel these feelings.
thanks for inviting us to the party. i’m glad you feel comfortable enough to share your frustrations with everyone here and that’s what we’re here for. so that we can hear all of the anger and you can take it out on us and then focus the positive on your family. you’re pretty fantastic!
Hugs to you Christine. We just got confirmation that my son has autism (Pdd-NOS). Your blog has gotten me through this heartbreak. I hope 5 years from now I can say that I’ve done half as much for my son as you’ve done for yours. You seem like such a remarkable woman/mother from the words you’ve written.
But we’re all human. I hate autism too.
I don’t know how to help you but I hope this reminder will bring you some good feelings. Remember the conversation at the studio? That was an EA with many years of experience. She was completely amazed by your work with Cuyler. She was close to tears telling me how much she wished other parents of kids on the spectrum were as good with their kids as you are with Cuy. She emphasized how lucky he is to have you and Sean as parents. You are making a huge positive difference in the life of that boy you love so much. No, it’s not easy, but it is worth it.
Lots of love coming from this friend, chin up, kiddo!
Le sigh.
Christine, you have every right to have your own pity party sometimes… none of this can be easy at all. This is a long list of stresses, and I can only imagine how tough it must be. And expensive. (I’m sorry you’ve returned from a “recharge” feeling not-at-all charged.)
I’m sending you hugs and love and lots of chocolate. xoxoxoxoxoxoxox