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Does anyone else get as tired as I do?
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tired mom Offline
Newbie

Posts: 6
Joined: Jul 2013
#1
Does anyone else get as tired as I do?

My daughter, almost 5, is a sensory seeker. I suspected it not long after we adopted her at 2. My husband would never listen to me when I tried to discuss it. I left him about 3 months ago (for other reasons). I know I'm extra tired now due to moving and being a single parent, but even before that, I've been so worn out.

I would just love to hear from someone else that I'm not imagining this. Does anyone else get completely worn out from parenting a sensory seeking child? Please tell me this is normal!

From the moment she wakes up its non-stop movement and noise and wanting me to do something for her or with her. She can't keep herself occupied for more than a couple minutes at a time, not even TV works. She has pretty much every symptom listed for sensory seekers, and none of the others. On days when we go someplace she is easier to deal with, it keeps her stimulated. The noisier and more crowded with opportunities to be upside down, the better for her, But then I get more tired and don't get work done at home that I need to. When we are at home all day, she's never still, I still can't get anything here done so I'm still worn out. It never ends, except when she's at preschool a couple days a week, which isn't nearly enough time for me to really get anything done. She stopped napping at 2. I have a little bit of time after she falls asleep at night, but of course I'm too tired by that time to do anything productive.

And does anyone else have problems with other people understanding how difficult a sensory seeker can be to parent, how tiring they are? My husband doesn't get it. My attorney doesn't seem to (she also has a young child, presumably without SPD, I'm thinking of replacing her anyway for a number of reasons). Other people, sometimes even family, think she's just a bad behaved kid. Trying to explain it to anyone is near impossible. It seems most people aren't familiar with SPD.

I found an OT therapist recently and will soon be seeing her regularly. I already brush her (but should do it more) and we'll be doing the therapeutic listening stuff.

But I know it will be a while before she's calmer. Meanwhile, some days are really difficult. It doesn't help that I tend to lean in the other direction where for me a perfect day would be one where I stay home and read all day. Her perfect day would be the noisiest, busiest place that she can be upside down a lot at and grab everything.

Does anyone know of an article I could print out and give to people that explains a little about sensory seeking kids and what it is like to parent them? I need to figure out how I'm going to start supporting myself financially but I can barely get quiet time to think clearly much less get on the computer and start figuring out what my options are. People don't seem to get that. Even now, its taken forever for me to write this post with a zillion interruptions.
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#2
RE: Does anyone else get as tired as I do?

At one time or another in the past two years, I've expressed all the thoughts you have expressed. We adopted my daughter (now 6) at age 2 and 3 months. The level of one on one attention she requires is just barely better than it was at that time. My husband often reminds me, "You knew if we adopted through the State, the child would have problems." My reply is always, "Yes, I knew that, but I didn't expect to have a 6 year old that can't be left alone for more than a couple of minutes without getting into trouble or danger." I had a family obligation last week to attend to all day, and when I got home at 8:30 p.m. he informed me that he was so tired all day they had watched TV for most of the day. As you can imagine, bedtime was pretty difficult. I'm not faulting my hubby as I know how he felt, but the difference is that I force myself to keep her active all day and limit TV to no more than one full-length movie or most days to one short educational TV show (think Dora).
I recommend you check out this blog: http://www.spdbloggernetwork.com/2011/04...diagnosis/
I'm sure you'll find lots of encouragement and, hopefully, a few laughs to lighten the load.
I recently "retired" and now have a greater appreciation for day care. I should have know it would be just like weekends, only now it's 7 days a week, but I was apparently deluded.
I have found every little thing you do to treat the SPD contributes to improved functioning. I used to think some new treatment would be the magic bullet that resulted in the great leap into normalcy. Now I see that each thing moved our daughter a little closer to normal functioning. So keep trying different therapies, treatments, diets, etc. and eventually improvement does show. Do what makes sense to you and ignore the doubters. One thing I've learned myself and from all the other parents I've read about on the various blogs and forums is that you have to grow a thick skin as most people don't and/or won't understand SPD.
One very encouraging thing I learned from a book I read last year was that the majority of kids with SPD are about 1/3 of their age behind developmentally. I helps to manage your expectations, and if you realize that functionally your child is 1/3 of their age behind, it's easier to accept that they're doing something you think they shouldn't be doing any longer.
Here are some articles I discovered about explaining SPD to others:
http://www.parentsupportspace.com/explai...to-others/
http://www.spdfoundation.net/about-senso...order.html
http://chicagoplayproject.com/explaining...-children/
My usual answer is "My daughter has a neurological disorder that prevents nerve signals from being correctly processed in her brain." I haven't ever had anyone question that. My bigger dread is how other children will treat her when she starts all-day school in a month. She attended a 2-hr. a day summer school program this month, and she was already coming home telling me some kids were making fun of her. We have to keep plugging along, one day at a time.
I encourage you to stay on this forum (and others) to stay connected with people who truly understand what you're going through.
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Kate_M Offline
Regular

Posts: 67
Joined: Mar 2013
#3
RE: Does anyone else get as tired as I do?

tired mom - hugs!!!

And I hugely second LAC. It doesn't seem to be any 1 single thing that helps, it seems like it's a lot of different things.

If she's seeking I highly recommend a trampoline (even one of the small indoor types usually used for fitness). or a crash pad (you can buy these, but I think if you can just make a pile of blankets and pillows and let her dive/crash into those, that could help. Do lots of deep pressure activities - our OT has a thin foam mattress and will "make a sandwich" with our son, folding the mattress over on him (with his head out the one side). She then rolls a big gym ball over him, pretending to spread whichever toppings he chooses over the "bread" (him in the matress). When he's done selecting everything he wants, she "gobbles" him up, pressing the ball into him and over him. He loves it.

I would recommend compression wear for the constant input, and if there's any chance you can, get a swing, perhaps in her case a trapeze bar that she can hang upside down from?

OT.com has sensory-diet activities based on different requirements, maybe look up what she's struggling with there?

Maybe also try squeeze and push/pull activities. I often sit and let M (6 years old) push against my hands, almost like wrestling. You can also get her to "push the walls out", pretend the room is getting smaller and she has to help you make it big again. get her to play "stuck in the mud" with you and wriggle between your legs as you stand - squeeze her as she wriggles through, make it challenging for her (but not impossible).

Also, lots of play-do, maybe coloured spaghetti for her to mush, slime, coloured rice with small hidden toys for her to find. Have her draw a picture in shaving foam. Make bread (let her knead it), or cookies (have her roll balls and place them on the tray. Do "taste-tests" with her - gather as many different tastes, then have her crit them. Use this to see what she likes - a lot of sensory seekers like really spicy food, or sour. You can then stock up on things that will give her oral input - sour candy or spicy gum / fireballs.

Oy. I'm afraid it IS a lot of work, but can only say: hang in there. Get to an OT as soon as you can, and then just try do as much with her as you can face. But definitely get a trampoline if at all possible. It *may* just give you some sitting time while she jumps for a while.
It will improve - SPD seems to have patches even when things are going well. My son went off to the bush with his dad for a few days during school holiday, was perfectly behaved there for 4 days, then came home and completely fell apart. But then got "better" a lot faster than he would have, say - 6 months ago?

Also, is it at all possible for her to join extra-murals - gymnastics, karate/judo/tae kwon do, swimming? All seem to have good case studies behind them showing they help with SPD.

LAC I really like your answer. I think that's the best I've seen so far. It's short and clear.

I actually made a print out that I gave to Ms aftercare and gymnastics class coach. Will see if I can find it and send it to you, tired mom.

LAC - do you remember which book it was that you read about kids with SPD being 1/3 behind? Please let me know, I'd like to read it.
(This post was last modified: 07-29-2013, 06:41 AM by Kate_M.)
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#4
RE: Does anyone else get as tired as I do?

Today was gardening day. What a success!! Digging in the dirt, finding worms, bugs, etc. for two hours. Then a bike ride for about half an hour and the rest of the day my daughter was so relaxed and happy. I think the digging and raking put a lot of resistance on the muscles and that's why it worked so well. Oh, and also, she ate like a grown man today!!
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Jaffa Offline
Regular

Posts: 112
Joined: Oct 2011
#5
RE: Does anyone else get as tired as I do?

Tired mum, I feel for you. I am a single parent to a 7yr old SPD child and he has tremendous energy. I agree with all that LAC has put in her posts.
I live In the UK so places to go are different. I take my son to a play area which has climbing and sliding and ball pool. He is there for 2 hrs at a time and while he is there I get a much needed cuppa and bit of quiet time as he is so engrossed with what he is doing.
I too find people think he is naughty and yes you need a thick skin, other people don't live in your shoes and if they knew what it entails they wouldn't want to.
So you are better than them to start with, give them ten mins in your shoes and I bet they would apologise.
Our days are different some worse than others but my son gets up ready to fight every day like his life depended on it. He will argue black is white.
We use trampoline in doors and "pushing walls" and we have a gym ball which I feel he is dangerous on but he loves it. He rolls about on it on his tummy and watches tv on it while he moves. The dangerous bit is he tries to jump on it from off the settee which then propels him in opposite direction usually ending up with him banging some part of him. He is full of bruises from his inability to notice he has banged himself. Because he is constantly moving he is better in himself.
My saving grace this summer was to find someone to take him out twice a week for six hours each day. They took him where ever he wanted to go, all day on train back and forth or visit parks or museum, his behaviour was better, his energy was less and he was getting the full on 1-2-1 that he craves and I kept my sanity.
Housework can wait, do what is really necessary but don't let yourself get burnt out.
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Mjandern Offline
Newbie

Posts: 3
Joined: Sep 2015
#6
RE: Does anyone else get as tired as I do?

I feel like you just described my life lol!!! YES I feel so exhausted And I often feel tired of the constant judgement. I did find a site. It s under sensory processing disorder parent support. Then click on " what an spd parent wants you to know ". It s awesome. But I have found that s it's almost impossible to get people to understand spd and what our children and ourselves go through. It is exhausting. It is hard because we do receive judgement. Our kids receive judgement. It s not fair. I actually had to put something on my fridge telling myself to stop trying to explain to people. And screw them if they judge. I also found this book called a different kind of perfect. It was really emotional to read but refreshing to read other people's stories. I also found that self care is super important for us parents so please make sure you are getting enough of that. The better we take care of ourselves the better we can be for our unique kids
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