Feeling a little helpless/hopeless

malcivar · May 2013

Lately I feel like I'm standing at the beach watching Chris go into the water and he keeps going further in and further in and further in and I'm stuck on the sand and I'm screaming at him to come back but he just keeps on going.

There are moments when the future doesn't seem so bleak but there are times, like for the past few weeks that I'm just terrified. He's going through a period where he can't really keep still and he spends most of the time running in and out of rooms, closing every door - every door must always be closed - jumping up and down on the couch or simply thrashing about if it's been oh, 2 minutes since the last time he was hopping up and down. And then there's the 'crab claws' - that's what I call this thing he does with this hands when I've got him 'trapped' in a high chair or my lap. He's got to be moving something - at all times.

And then there's "nine". I don't know what it means but it means something to him because in the morning, that's usually the first thing he says to me, "nine". If I'm scolding him because he's written all over the TV again, his response is "nine". I ask him "what does 'nine' mean?" he replies "nine".

His teacher keeps telling me that we have a whole more year and that I shouldn't worry but I'm scared. I'm scared that he's sinking deeper and deeper.

I don't know what to do to help him so I just hug him and give him kisses and tell him that I love him. But I know that doesn't actually do anything. So I feel more and more helpless every day.

Sorry - I'm rambling but I just needed to let a little bit of it out.

Thanks for listening.

august06mom · May 2013

I'm sorry you're feeling so hopeless Do you have any kind of support system that you can turn to? Anyone who can help you get a break?

Hugging and giving kisses are important -- showing love is important. While it might not fix anything, demonstrating affection is important for everyone.

nomadica · May 2013

Oh, I am so, so sorry. Reading your post brought tears to my eyes. DS has also started up with more concerning behaviors, and I'm sure as Auntie said he now has the bandwith to be demonstrating those. But man, it feels like a punch in the gut to see new behaviors and concerns arise, doesn't it? It makes me feel so scared, like I will forever be waiting for the other shoe to drop, for what new problem we're going to have to deal with. I don't have much advice (except for do all you can do take care of yourself- exercise, alone time, whatever makes you feel good). But I can certainly relate and feel your pain:(

Assembly_Reqd · May 2013

((Hugs))

It sucks when you get into a groove and something comes along to Fuuuck with your mojo. Right?

Try and give it a couple if days, sometimes the doldrums are a necessary correction. They keep you on your toes...

MirandaHobbes · May 2013

I'm sorry, I hope this is just a phase he's going through. It seems like my DS will pick up a bad habit and we'll stress over it for awhile and then it'll go away and be replaced by something totally different.

malcivar · May 2013

-auntie-:
Vent away. I'm sorry you're not in a happy place.
Most kids on spectrum do not regress. Sometimes what looks like withdrawl or regression is actually just a new part of the underlying presentation that he hadn't matured into until now. It could be a sign of greater cognition.
A lot of DS's more stigmatizing behaviors started to be more obvious around the time he was four- things like stimming and fingerplay which required bandwidth he didn't have previously. Other behaviors like tics came later, closer to school age. He was more active between 4-6 than at any other age.
It sounds like "nine" is a verbal stim- something he probably just enjoys saying. Either that or he's taken up German behind your back. DS did a lot of random word play at this age. Crab claws could also be a stim similar to flapping or finger play.

Yeah, I definitely think it's something where things are just more obvious/apparent with Chris. The 'crab claws' I definitely think are a stim - he used to curl his fingers one over the other before and hook them. Prior to that he used to "side eye" everything.

LOL, German on the side. I like that! You just made ma laugh.

I will say that throughout all this there is one thing I'm enjoying. When I give him hugs and kisses, he looks up at me and says "mommy". That's not something he ever did before.

Thanks for the support ladies. And yes, I'm forcing myself to look outside for diversions - hobbies, more socializing. Doing this 24/7 takes a toll.

bumpuser511563 · May 2013

I could not reply but when I saw "nine," I thought that may as well be Chris's favorite number.

DS is into saying "baby oil."

oandmplus1 · May 2013

Just wanted to offer hugs.

lite-bright · May 2013

I'm so sorry. Your first paragraph just made me want to give you huge hugs.

I hope that you start seeing some good to balance the scary.

Shayna0182 · May 2013

Big hugs to you. I think every ASD mom feels like treading water it's normal to feel helpless at times.

Ds is almost 4 and it always feels like once we have a quirk under control a brand new one pops up, and the cycle repeats.

I understand what you mean.

bparkhur · May 2013

Sounds like he needs to be friends with my son, whose favorite number is eight...hugs for you!

aiche Umm Ayoub · May 2013

Sorry you feel hopeless please reach out and get some support from your community raising a special needs child is hard and challenging feel free to vent away . Does your son have a diagnoses yet? It took me along time to get my daughter diagnosed and the waiting made me feel helpless now that I know what she has it's easier at times but still hard .

Unknown · May 2013

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malcivar · May 2013

bparkhur:
Sounds like he needs to be friends with my son, whose favorite number is eight...hugs for you!

Love this!

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