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My Boys & Me
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Vivian Offline
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Posts: 22
Joined: Oct 2012
#1
Wink  My Boys & Me

So where do I begin. I'm a Mother of 3 very Beautiful and very rambunctious Boys. Twin Boys, 3 yrs old and my oldest son is 6 yrs old. He was diagnosed with SPD last year. it affects his balance, motor skills, attention and ability to focuss or concentrate. He can't seem to stay still for long with a few exceptions. I often have to brace for impact with strong hugs and kisses that bruise sometimes. Personal grooming is always assisted but he tries and succeeds with a little coaxing. Ok a LOT of coaxing. We recently moved to Georgia with my family's support and blessing after the divorce. I wanted to give them more and knew it wasn't possible if I stayed. He's had so much to deal with. His dad left and he became a big brother of not just one but two baby brothers at the same time. I often think thats a lot for one little boy to handle. SPD is very difficult for me to comprehend. The more I learn the more confused i become. some things are more clear but some not so much. He's in a very good school so theres plenty of support. Now I'm trying to find resources to help us with therapy at home. We have fun as a family. Watch movies; play board games; go for walks and play follow the leader. He's always the leader and very proud of it. We play a lot with balloons because they move slower than playing ball so there's more time to catch or hit them. This is a good game for us. I'm visually impaired so it gives me a chance to be more active with them as I can't catch or throw or hit anything else lol. He loves playing his DS and he Loves to draw. He can spend the whole afternoon quietly drawing and explaining each picture as if telling a story. And for now he's upsest with Batman. That's something we share as I love to write and tell stories using the Boys as main charactors. which is easy being the wonderfully energetic mischievous ones they can be... sometimes. I am so grateful to have found this site. The worst is feeling alone. The best is finally having a name for what I knew in my heart. That something was not right and we needed help.
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#2
RE: My Boys & Me

Well welcome! You will find a lot of comfort here. Sounds like my son! He told my sitter the other day that he will be a famous artist and doesn't need all the other stuff they give him at school! lol My son is 8 and was diagnosed at 1 1/2. Loves his DS too, ( great for when you have to go somewhere and need them to sit still for a length of time. lol ) SPD is hard to comprehend I guess how I have learned to understand it is that the sensory system is out of whack! That a simple touch can cause pain. I think the imortant thing is that we never forget to look at things from their perspective, be the best advocate for them, and keep finding ways to help and educate others who do not know. Remember we are here for ya and you definately are not alone!! Have a great weekend!
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Vivian Offline
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Posts: 22
Joined: Oct 2012
#3
RE: My Boys & Me

Thank you so much. It really is comforting talking with someone who understands. Your son sounds like a great kid.
(This post was last modified: 10-20-2012, 01:46 PM by Vivian.)
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shorrocksalot24 Offline
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Posts: 57
Joined: May 2012
#4
RE: My Boys & Me

Welcome to the site Vivian! It is a great site, and there are many great posts, all over it, plus stories, and more in the menue above! You are not alone! It sounds like you are doing an amazing job, and you are very in touch with him! My 12 yr old has spd, and I do as well. Last night I was telling him to not poke me - because it literally hurts! He seemed amazed that such a light poke hurts me, because he has a high pain threshold (and we both have Fibromyalgia too - I am diagnosed and he will likely be soon) I relate to the personal grooming aspect - boy wait till puberty! I still have to ask him every day if he put his deoderant on, and yell up to him everyday, to wash his hair really GOOD. I found that if I tell him he smells good, or how great his hair looks, it helps him stay on that path (girl interests are already kicking in for him too) I am glad you mentioned the balloons, because I forgot that we used to do that - a lot in our home. Again, welcome, and remember you are not alone! stacey
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#5
RE: My Boys & Me

Is Fibromyalgia something that a lot of SPD people have? My son complains a lot about his legs hurting him when he has to stand for a long time.
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shorrocksalot24 Offline
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Posts: 57
Joined: May 2012
#6
RE: My Boys & Me

(10-21-2012, 12:25 PM)heather40 Wrote:  Is Fibromyalgia something that a lot of SPD people have? My son complains a lot about his legs hurting him when he has to stand for a long time.

Well, in my families case - its like the chicken and the egg. I have had mild SPD my entire life - and it was not until right before I was diagnosed with FM that SPD became 100x worse. My son - probably had mild SPD as well, which became worse too. He has always had pain issues, but there has been inclination to blame that on "growing pains" and has also been labled as viral syndrome once. In the last 7 - 8 months his pain has been chronic. His pediatrician said that growing should not cause that much chronic pain. He has had many of the other indicators of it too. I would be more inclined to say that people with FM have SPDs, and that SPDers dont necessarily have FM. Meaning that while I am on two forums that are active - I come across more SPDers that do not have FM, and its only recently that I have seen the cross links in the literature, and community, that FM sufferers have SPDs like we see here on this forum. I am also inclined in my families case to notice the vast overlapping of not only SPD, FM but my son also has tourettes also now, and we have some serious ADD/ADHD issues across the board as well. - Me being the worst by far. Sad - but Smile whatcha gonna do??? Smile
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Vivian Offline
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Posts: 22
Joined: Oct 2012
#7
RE: My Boys & Me

Thank you Stacy. I'm happy to read your son is independent with personal grooming. That is one of my fears. Will he become more independent? I'm a little embarrassed to say this. I have to clean him after a bowl movement with baby wipes. he tries but can't quite acomplish it without my assistance. My friends say "well he's a boy and he's only 6." Which I understand. I wonder and worry about him and how I can help him do more for himself. Some movements are difficult for him and he knows this. He use to be last getting off the school bus. Now he's one of the 1rst. He still moves cautiously down the steps and last time he paused for a moment. A child behind him yelled "Move!" It didnt phase him or perhaps he didn't hear her as he was focussed on the steps and went down. He ran to me and gave me a hello Mama hug with his usual vigor. I thought it best not to talk about it with him as he seemed to not pay the girl any mind. Its rough not knowing if my insticts are right when it comes to situations such as this. I'm so happy to be here where I can discuss these things with others who understand.
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shorrocksalot24 Offline
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Posts: 57
Joined: May 2012
#8
RE: My Boys & Me

Vivian, Dont be embarrassed, for starters! He is a boy who is 6, but having SPD - there are a whole lot of things that can be difficult, even feeling if you are clean or not. Or it could be part of the fine motor skills - I am in no way expert at this - but many here are much more knowledgeable than I am! We definitely went through "skid" rowWink We also went through some issues of leaking pee - because he would wait way too long to go - and would not be willing to stop playing - or get off of a field to go. Age does come with rewards. Your instincts are the very best ones to follow. In addition keep learning as much as you can about how to help him in ways that you may not have thought of. I sure have learned a lot from this forum!

My son falls down steps pretty often - I used to have flash backs of the many times - I would just miss his shirt grabbing him at the top of steps and him going all the way down! ugh..It wasnt lack of gates either - he was old enough past that stage - he just was not careful - ever. My sons feet have grown - size 7 - size 11 - since last May - so the steps in our home - have become dicier - because of his foot size!!! I dont think its slowing him down though! I did not even think about his foot size, he did, when I questioned why he is falling down a bit more!

I think its great that your son - is aware that slow and steady is a good way to go with the steps! Its also great to not let other kids bother him too much. I find it hard to not feel more anger, than my own kids do, when it comes to the unempathetic, or just plain mean spirited people/kids in the world.

I know that its hard for us being moms, trying to help the boys, without being boys ourselves. It has been an issue here, (the hair washing for instance!). Its not like I would be in a shower with him to help him - so I try to get my husband to help him - but I ultimately found #1 to get the shampoo that is made to strip hair sprays and gel out - because the harshness of those - gets the oil out quickest and best for him. #2 like I said - praise the heck out of him - flattery will get you places, even with the kids! I think it was easy to miss the time frame - of more aggressive hair washing - because he had crew cuts for a little, and did not have such oily hair, before hitting puberty. Suddenly I realized - he is still using little kids stuff!!! :0

Smile stacey
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Vivian Offline
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Posts: 22
Joined: Oct 2012
#9
RE: My Boys & Me

Oh yes I understand. My son does not seem to feel he has to go till the last minute. Then comes looking for me to ask permission to go while hopping around. I tell him we're home and he doesn't need to ask but for whatever reason he feels he must do this even at home. It makes me feel good to hear progress from parents of children with SPD. And yes I will continue to learn all I can. Thank you again Stacy. Thank you everyone here.
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LAC1961 Offline
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Posts: 299
Joined: Jul 2012
#10
RE: My Boys & Me

My daughter is getting much better at wiping since I started buying flushable wipes and supervising the wiping step by step. I don't know how long it will take to trust her to wipe after a BM without supervising, but at least she's doing the actual wiping herself. With bathing, I have to wash her hair, but she washes her own body with one of those puffy things and liquid soap if I sing her through it body part by body part (This is the way we wash our ____, wash our ___, was our ___. This is the way we wash our ___, to get nice and clean.) Yes indeed, it is tedious, but she now washes herself with supervision, which developmentally she should be able to do at 5 y.o.
Vivian, is the permission to go thing possibly because he has to ask at school, and it's too difficult for him to have to do it two different ways for home and school?
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