When Do We Give Up?
I gave up yesterday. The details really don’t matter I guess. All that matters is I was pushed to that place where I didn’t recognize myself.
I’m fighting with Cooper’s school and for the first time I saw that they are looking at him as a number and not a child. All the horror stories I’ve read about schools and special needs kids happened. I spent hours talking to people that have never met Cooper….nor do they really care about his best interest. Cooper is a special child with special needs.
It got nasty. I pulled all the ammunition I could think of. And it took all day and it’s still going. I think I’m going to lose. For the first time I can honestly say Cooper is not getting what’s best for him.
And then I lost Cooper. Funny how I just posted about that. I knew he was safe but I couldn’t actually find him. And the transportation company lied to me. They outright lied.
I yelled at more people yesterday than I have in my whole entire life. It wasn’t me. I was this crazy version of myself.
And then the hardest part. Cooper had the most epic of tantrums at Dairy Queen over a melted ice cream sandwich. His little body turned into a 50 pound bag of jello. It lasted 10 minutes and it was loud and he was close to injuring himself. And me. People stared at me. At him. I could not get control. I couldn’t hold his body or calm his screaming.
It was the perfect storm.
It was the worst day.
So, on the ride home, as Cooper watched his iPad, I gave up.
I started to really feel sorry for myself. As my friend would say….’let the pity party begin.’
I started to ask myself why I was doing all this. Why was I fighting so hard.
I work full time. I have another child. I have a life. I can’t spend all day on the phone arguing over an IEP. Or calling therapists and bus companies.
I started to really fume.
Here is the question I couldn’t get out of my head…..’does it really matter?’
Does it matter if I fight for Cooper? Does the therapy matter? Or am I just fighting to fight?
At this point should I just accept the situation and stop kiling myself.
I would turn myself inside out for him. But…should I have too?
I only ask because this could be it. He might never talk. So why fight for more speech therapy. Why fight for more of anything.
Maybe we should just stop and let him be.
Maybe I would be happier. Maybe he would be happier.
I’m not saying we shouldn’t fight for our children. But the level of time that goes into Cooper’s care is unbelievable.
So yes, yesterday I was in a low, low spot. It was ugly. I will eventually dig out and keep fighting. Because that’s what moms do. I would be lying though if I said thequestion wasn’t still nagging me…
Maybe I would be happier if I stopped fighting so hard…..
So difficult, but you are right, you will be back fighting, because you are a mom and you love your son. Look at that face, and he is so worth the fight. Thinking of you.
I don’t know. Maybe you should take a break. I mean, continue therapy by all means, but maybe worry about it less. Like when women want to get pregnant and they try and try and, no luck. And then as soon as they stop trying … Maybe you just need some time to be a family that isn’t fighting or working. It is okay to do that. It doesn’t make you less of a mother. In fact he may need you to step back and show him that you will love him even if he doesn’t speak with his mouth parts. It’s okay to give up watching the clock of words, it doesn’t mean giving up on him.
Hi there, very true. I’m not sure what we are going to do. I think try and coast into the new school year and get adjusted. 🙂 Find some normalcy!
Nothing wrong with it, we all need a break sometimes. And the first thing we can do to care for them is to really care for ourselves. Your little man sounds like an amazing heart, and one that is finding ways to speak to you without words. It’s beautiful journey. Love you to your family!
Hi Kate,
I think this is a really good question! I know you are feeling down and god, you are allowed to. But this is also a totally valid thing to discuss. What might feel like giving up might actually be accepting some stuff and just trying to be happy. Happy kids learn and grow. Kids who tantrum all the way through therapy aren’t learning much anyway. Maybe it’s just changing what you are fighting for?
In my case for Piper I gave up all but one therapy session and just let things be for over a year. She still learnt and developed in her own way and made a lot of progress when she was ready. As we all know, you can’t force an autistic child to do anything! I’m sorry you are having a hard time with Cooper’s school, that’s really tough. Thinking of you. xx
How are you??? So good to hear from you. I think about Piper from time to time. Thinking of you too!
I’ve been there. You may actually need to take a break. But I guarantee you’ll be back out there fighting for him again. It’s what we do!
So true. I actually quit all of Cooper’s therapies 2 years ago. It was too much. I might have to consider that again. It’s just so hard to wrap my brain around sometimes. He’s only 4!
You’re doing fine, lady. Sometimes we have to work smarter and not harder. You’re just trying to figure out what’s worth fighting for and what’s not the best use of your finite time and energy…and there’s not a damn thing wrong with that. Don’t see it as giving up…see it as making necessary adjustments.
So true. Working smarter…not harder is exactly how I would put it. I feel like every single activity or decision needs to be a calculated planned out move. It’s not like that with my other son. Blah. I am in a total funk lately. Trying to dig out!
I started reading your blog a few weeks ago..maybe it has been aa month? Who knows time flies. So many of your posts..especially the most recents are literally like they are coming from my own head. I cry most of them. My son is 4 as well he is not talking and they think has Apraxia too. We try everything. Question everything. Is this the right therapy, class, slp, and why, if we r doing everything right and early (he started therapy at 2) does nothing improve? We see little progress esp in language and communication. And I have asked these same things. But like u I will never give up hope and will keep fighting. But yes it is Sooo hard. U r not alone. We are in it together. It helps to know I am not the only one with these thoughts. My son is a twin and his twin is not on spectrum and has a ton of language. I am thankful of course he is doing well. But like your younger son it is a reminder of where he should be and mostly a reminder of the thoughts and feelings imam missing out on. I work full time and we have an older girl who although is a handful is not on spectrum either. My son is a full time job. The appts, IEP (I cry every one), therapy, research. Plus giving the other 2 time and work. It is all overwhelming. Well this prob doesn’t help except to thank you for sharing open and honestly.
HI there. Glad you found me! I really found strength once I started to find other moms like myself. I felt so alone before that. I can’t imagine have twins. Huge hugs to you. Cooper is 4.5 and Sawyer is 2.5 and even thought is challenging. Sawyer has passed Cooper in every way. It’s very, very hard to emotionally handle. I am here for you if you every need anything!
Feeling so low tonight – just sad that my baby can’t tell me anything he is feeling or what happened today at school. His brother gave me a 20 minute dissertation at bed time of things that happened months ago and all his thoughts about it and asks me things like “how come a thought bubble doesn’t appear above his head like in Tom and Jerry when he is thinking”…and across the room, my Dillon is listening and thinking and yet can’t get the thoughts out and I want to hear them I want to hear and know everything. And I think what else can we be doing? How do you unlock the words – we must be in the wrong therapy, wrong school, wrong everything.
I just came across your blog. My child is almost 3 with ASD, he’s nonverbal. Has your developmental pediatrician suggested medication for the hyperactivity or anxiety? Something to think about.
Hi there. Nope, that has never came up. Cooper’s hyperactivity is hard to describe. I don’t think it would fall under ADD or any of those. Who knows though…
Uniquely Human, by Barry Prizant.
I agree with the others that say it’s okay to take a break, because sometimes it feels like all we ever do is fight the fight and it leaves no time to live. But I can tell from your personality that comes through in what you write that you will not give up.
While going through files and files of old paperwork for my blog, I found where I had written the following. I have no idea where it came from, but it was true for my Jess.
“Autism doesn’t mean stagnation. People with autism develop, age, learn new things, and leave behind old habits… As they grow older, they become more teachable and responsible.”