I'm just figuring out how to cope with an SPD child. - Mothering Forums

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#1 of 14 Old 02-23-2009, 12:00 AM - Thread Starter
 
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Hello all~

I am new to this sub-forum, though not to MDC. A few months ago, my DH and I finally got some answers about our son when he was diagnosed with Sensory Processing Disorder. He is sensory seeking, has auditory sensitivities, motor planning problems, has an extraordinarily hard time with transitions, separation, and becomes over stimulated very quickly. He is in OT once a week, which has been a big step in the right direction. He is very difficult to be around sometimes and he is a real handful. I also have a 13 month old daughter.

As many of you probably know, getting the proper diagnosis and care providers has been a blessing. We love our doctor and OT. It took us a long time to come to terms with the fact that we needed some help with him after years of thinking his "issues" (for lack of a better word) would resolve themselves. I am so grateful to our OT for the amazing help she gives us.

I am at a bit of a loss though, on how to handle this with other people. It is so hard to explain his actions and needs to people who don't even know what SPD is. I get the impression that some people think it's a bunch of hooey that I have invented to make excuses for my son. It's hard to explain that he has special needs when he looks (and sometimes acts) like a very "normal" boy. We already have bent our lives around his needs and sometimes it feels like our lives will never be easy.

He has been at home with me for his entire life (he is 4 and a half). He went to montessori preschool very briefly (a month) and it did not work out well. That's actually what led us to get some help. He is going in for a full evaluation with our local school board in a week and a half to see if he can qualify for public preschool. I am hoping that it works out and that he can get some help because I'm really at a loss as to how to keep his home life challenging enough for him, when he is so defiant of anything new I try to offer him. I have absolutely no help or support of any family (even though my and my husband's family are in the same town as us). I am alone with both children for ten hours a day and I am FRIED. I love him fiercely, but some days I just do not want to be around him, and that just makes me feel guilty. I go back and forth between being angry and depressed about the state of my life right now.

Is there a SPD tribe here at MDC?

Anyway, I could go on and on. Any advice for coping? I am really falling apart here and feel like I am constantly under attack by my DS. I find myself tensing up throughout the day, bracing for the next tantrum/meltdown. My DD gets the short end of the stick because I'm constantly attending to DS's needs. And of course, at the end of the day, there is very little time or energy left for me or for me to give my husband.
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#2 of 14 Old 02-23-2009, 03:00 AM
 
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Hopefully the OT will start to pay off soon. The key though, especially for a sensory seeking child, is to set up your home so that he can get the sensory input that he needs on a daily basis. Lots and lots of opportunities to jump, for heavy work, playing physical games, etc. Lots and lots of walking too - think 'green' and walk everywhere you possibly can (i.e. get OUT of the house a lot).

Do you have the family resources to be able to hire someone to give you a break? Being alone with a kid like that 10 hours a day is a LOT. Given that your son is so intense, I'd look for someone with some special ed experience (your run of the mill teenager isn't going to work here). If there's a college nearby, maybe a student who's major in ed? a student thinking of going into OT or speech language pathology (not that your son needs speech help, but that they have a better understanding of kids who are 'different').

As for what to tell people, I'd go with either:
"He's easily overstimulated, and when that happens his 'fight or flight' response kicks in and he become unpredictable."
or
"He's got some neurological issues that make it hard for him to regulate information coming in."

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#3 of 14 Old 02-23-2009, 11:25 AM
 
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I really like the handouts by Dr. Cheng from Canada regarding Regulatory-Sensory Processing Disorders.

If you go to this link: http://www.drcheng.ca/en_healthinformation.htm

and scroll down to "Sensory Processing and Self-Regulation: Guide for Families" you can download a really good word document that helps to describe what it's all about in really easy to understand terms and has nice pictures to go along with it. It's pretty long, but what I did was print it out and put it into a binder for reference.

There's also a very helpful explanation that all people sometimes need to do things to help them self-regulate. For instance, a tired driver will need to open up the windows, turn on the radio, stop and stretch their legs or get coffee to help them keep stimulated enough to keep driving. There are many adults who aren't able to face the day without coffee and a shower. Those things are all sensory alerting activities.

If you think about it, people use exercise, yoga, meditation, calming music, etc to reduce stress. Those are sensory calming activities.

Adults use sensory regulation techniques all the time. It's just that for some kids, they don't have the knowledge and ability to regulate themselves at all, so we have to help them. In time, they will be able to do it themselves, or certain parts will integrate like they are supposed to.

I really hope this helps. I liked it a lot because they showed some particular examples of getting the right amount of stimulation for each kind of sensory issue.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#4 of 14 Old 02-23-2009, 01:04 PM
 
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You might want to look at the book, "The Explosive Child". Really more an attitude than a technique, this book helps define "lagging social skills", with the idea that kids do well when they can. I found this outlook right in line with my style of parenting.

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#5 of 14 Old 02-23-2009, 03:25 PM
 
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I just wanted to sent out hugs. I know how you feel. Your story seems like it could have been mine just two years ago. My sons problems (that needed professional intervention) really started at about 4.5 too. He still has all the same issues except now we deal with them and can involve him in helping himself. I can definitally relate that some days I feel like he forces me to be the parent I never wanted to be and I'm at the end of my rope. I tried to grieve the loss of what I thought our "perfect" life would be like and start focusing on the many great things about him. It's hard -the ups and downs, but I believe I got my kiddo for a reason and he has more to teach me about life that I could imagine.
I also agree with the pp- learn all you can about what your child needs and set up your house as best as you can to accomodate him. All the best.

Me, my Husband and three little Boys! 7, 5 and 7 1/2 months! Life is good!
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#6 of 14 Old 02-23-2009, 05:04 PM
 
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Quote:
Originally Posted by MamaScout View Post
Hello all~


I am alone with both children for ten hours a day and I am FRIED. I love him fiercely, but some days I just do not want to be around him, and that just makes me feel guilty. I go back and forth between being angry and depressed about the state of my life right now.

Is there a SPD tribe here at MDC?

Anyway, I could go on and on. Any advice for coping? I am really falling apart here and feel like I am constantly under attack by my DS. I find myself tensing up throughout the day, bracing for the next tantrum/meltdown. My DD gets the short end of the stick because I'm constantly attending to DS's needs. And of course, at the end of the day, there is very little time or energy left for me or for me to give my husband.
Somehow I missed this part. I guess I stopped reading. Sorry about that.

I got over some really hard feelings by blogging about them. Well most of them. It was hard not feeling incredibly resentful that I gave up my career only to be thwarted at almost every turn by dd's incredible upsets.

Some books that helped -

Kids Parents and Power Struggles - to learn techniques on reducing the intensity (both yours and his) and also how to become an emotion coach to your child.

I second the Explosive Child - it made me realize why traditional methods of discipline failed to work with dd2.

I have some blog posts here that will at least make you feel like you aren't alone (dd has selective mutism which is an anxiety disorder and in her case, the basis was because of heightened sensory issues that needed to be managed with calming activities).

http://raisingsmartgirls.wordpress.c...d-figured-out/

http://raisingsmartgirls.wordpress.c...child-is-hard/


but I also have some posts you might find helpful too:

http://raisingsmartgirls.wordpress.c...plosive-child/


http://raisingsmartgirls.wordpress.c...olving-binder/

http://raisingsmartgirls.wordpress.c...-diet-at-home/

http://raisingsmartgirls.wordpress.c...-diet-at-home/


With therapy and/or what you can do at home, you will find improvement. The ages between 3.5 and 5.5 were probably the most difficult for us, but now things are better, even the bad days aren't quite so bad as they used to be. I breathe a sigh of relief now that she can move on from her upset within a few minutes whereas before it would be a good 20 minute episode, even for something as minor as opening her granola bar wrapper instead of letting her do it.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#7 of 14 Old 02-23-2009, 10:43 PM - Thread Starter
 
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Wow thank you all so much! I'm so glad I finally came out of the closet so to speak!

There is so much good information here I can't tell everyone how much I appreciate it! I do have a copy of The Explosive Child, and I read it last year before our diagnosis. Looks like I need to pull it out and read it again. When I saw that the subtitle of that book uses the words "easily frustrated and chronically inflexible" I knew it was for me!

OT has definitely made a difference, almost overnight. It was amazing! But we seemed to have hit a plateau. And I will admit that I am sometimes not good about staying on top of the sensory diet. Especially when he seems so resistant to it! I thought he was supposed to be craving sensory input, but when I say, "let's play the brushing game," or "show me how high you can jump on the trampoline!" he says "NO!" It's almost like he's doing it just to be defiant. It doesn't make any sense.

Unfortunately we do not have the resources to hire someone for help. I could go and and on about it (that's a whole other post!) but we are $20,000 in debt for medical bills last year. Emergency c-section for me, hip dysplasia for DD, thyroid cancer for DH, and a hospital stay for an eye injury for DS. We know how to have fun! The debt is really putting a strain on our finances. We don't even have the money for OT. We are so lucky that our OT lets us pay just what we can for DS's weekly treatment. We pay only a fraction of it monthly, but we feel it is SO important that we can't go without it.

Lynn, thanks for the responses. Those are really good and nice and short. I feel like I tend to go into too much detail with my explanations.

Crazymom, yes, I certainly have grieved. I know what you mean. Nothing is like we planned it to be. And I am SO TIRED of getting the "been there, done that" from my MIL. She literally says that to us because DS is exactly like DH was as a child. (Which is giving me alot of new insight into my DH, by the way.) Other people have not been very supportive, either. My mother is 5 miles down the road and I talk to her maybe once a month. We see her for a visit about that often, too.

Miss Information, THANK YOU for sharing and thanks for all the great information. Oh my gosh, YES! Haircuts!! Trips to the dentist!! All of these involve screaming and cajoling. Your post of how your DD opened up in a new school gives me hope. DS is terrified of school because of his experience last year. He says, "I don't like school. That's where they call me a bad boy." The other kids called him that from what I can tell. When he gets overstimulated he hits and pinches. He would often climb on top of other kids or crash into them in an effort to get sensory input. I'm really hoping that we can find somewhere that he will "fit." Our OT said that there is a preschool within our public school that provides sensory diet and has OT's on staff. That is a dream for us, and I hope it happens!! And yes, when he is self-regulating, after lots of sensory input, my son can get over upsets relatively quickly. I'm amazed by it. Last week immediately after OT, DS asked to go to the nearby goodwill, but I told him we couldn't because DD was very tired and grouchy and he just said "okay" as opposed to screaming and crying about it for 15 minutes. I was amazed.

Thanks again to all of you for the help and support. I'll keep you all posted.
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#8 of 14 Old 02-24-2009, 12:15 AM
 
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I don't know where you live but you may be able to find a support group in your area that provides respite care for parents of special needs children. In our area, it is a great resource for support and getting that much needed break.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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#9 of 14 Old 02-24-2009, 10:24 AM
 
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Originally Posted by MamaScout View Post
Wow thank you all so much! I'm so glad I finally came out of the closet so to speak!

There is so much good information here I can't tell everyone how much I appreciate it! I do have a copy of The Explosive Child, and I read it last year before our diagnosis. Looks like I need to pull it out and read it again. When I saw that the subtitle of that book uses the words "easily frustrated and chronically inflexible" I knew it was for me!

OT has definitely made a difference, almost overnight. It was amazing! But we seemed to have hit a plateau. And I will admit that I am sometimes not good about staying on top of the sensory diet. Especially when he seems so resistant to it! I thought he was supposed to be craving sensory input, but when I say, "let's play the brushing game," or "show me how high you can jump on the trampoline!" he says "NO!" It's almost like he's doing it just to be defiant. It doesn't make any sense.

Unfortunately we do not have the resources to hire someone for help. I could go and and on about it (that's a whole other post!) but we are $20,000 in debt for medical bills last year. Emergency c-section for me, hip dysplasia for DD, thyroid cancer for DH, and a hospital stay for an eye injury for DS. We know how to have fun! The debt is really putting a strain on our finances. We don't even have the money for OT. We are so lucky that our OT lets us pay just what we can for DS's weekly treatment. We pay only a fraction of it monthly, but we feel it is SO important that we can't go without it.

Lynn, thanks for the responses. Those are really good and nice and short. I feel like I tend to go into too much detail with my explanations.

Crazymom, yes, I certainly have grieved. I know what you mean. Nothing is like we planned it to be. And I am SO TIRED of getting the "been there, done that" from my MIL. She literally says that to us because DS is exactly like DH was as a child. (Which is giving me alot of new insight into my DH, by the way.) Other people have not been very supportive, either. My mother is 5 miles down the road and I talk to her maybe once a month. We see her for a visit about that often, too.

Miss Information, THANK YOU for sharing and thanks for all the great information. Oh my gosh, YES! Haircuts!! Trips to the dentist!! All of these involve screaming and cajoling. Your post of how your DD opened up in a new school gives me hope. DS is terrified of school because of his experience last year. He says, "I don't like school. That's where they call me a bad boy." The other kids called him that from what I can tell. When he gets overstimulated he hits and pinches. He would often climb on top of other kids or crash into them in an effort to get sensory input. I'm really hoping that we can find somewhere that he will "fit." Our OT said that there is a preschool within our public school that provides sensory diet and has OT's on staff. That is a dream for us, and I hope it happens!! And yes, when he is self-regulating, after lots of sensory input, my son can get over upsets relatively quickly. I'm amazed by it. Last week immediately after OT, DS asked to go to the nearby goodwill, but I told him we couldn't because DD was very tired and grouchy and he just said "okay" as opposed to screaming and crying about it for 15 minutes. I was amazed.

Thanks again to all of you for the help and support. I'll keep you all posted.
As far as the new school goes. What I would do, if you can, is spend time with him there at the new school ahead of time. Perhaps you can go with him to observe the classroom before any students are in the room, to get a lay of the land. I would try to set up and appointment or two to meet the teacher/teacher helpers and the classroom. If there is any park outside the school, I would try and visit the park when the school is not in session (if they allow community access to it).

Does your school district have preschool-aged intervention programs? I would try to look into that, and bring your evaluation with and ask them to screen him.

If your school district has a preschool special needs classroom, he might benefit from it. I know you might be worried about the stigma, but honestly, at the preschool level, it doesn't go any further than preschool (unless you want it to go further), and he'd be able to get sensory help at the school. And, at least in IN, it is set up so that the cost is only $100 for the entire year (and that is just for supplies).

If that's not possible, then see with the school director of the school he will attend to find out if you can bring in a or a bouncy ball to use when he's feeling out of sorts or have the teacher hand him a finger figit toy or squishee stress ball if he looks like he might need to pinch. If he needs re-direction, or if they see him getting upset, perhaps they can direct him to that physical activity rather than acting out (often, if you are observant, you can see the signs of increasing agitation). At home, you can also teach him to reach for those things himself if he feels the urge to pinch (these would be things he can do instead of pinch others). Perhaps you can make him a weighted vest. There are instructions on the web for home-made versions.

Also, make sure your son has protein and complex carbohydrates along with breakfast and a good snack/lunch during school. Dd always would have more issues related to being hungry and tired.

I know our community preschool (the regular preschool) has kids that act out occasionally, but they are treated well there, they are never called a bad boy/girl. They instead are removed from the classroom with the teacher helper and given some redirection and a small talk about how we don't hurt our friends. Occasionally the parents are called just to get input on how they would want the teacher to proceed (to keep discipline consistent with what they do at home).

It's a shame that your son's other school made him feel bad. That's terrible.

:::: (dd2 wanted these smilies)

Mama of 3 girls: 7.5 , 6 , and 4.5
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#10 of 14 Old 02-24-2009, 10:30 AM
 
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You may want to research Houston Homeopathy as as course of treatment- they are doing amazing things there! And there is a clinic in Canada as well. All able to done long distance.

Houston:
www.homeopathyhouston.com

Canada:
http://www.homeopathy.com/clinic/
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#11 of 14 Old 02-24-2009, 10:38 AM
 
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Both these centers are doing something called Sequential homeopathy which is VERY different than classical or constitutional homeopathy. They are actually helping autistic children fully recover- be sure to read the testimonials....best of luck
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#12 of 14 Old 02-24-2009, 11:52 AM
 
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Hi there, another mama here just chiming in that I understand. My son is 5, and he was diagnosed a few months ago. He goes to OT once a week, and we do brushing and really try to stay on top of the sensory diet. But my son also refuses to do it sometimes. We have noticed a big improvement. But it can still be very challenging.

The hardest thing for me to deal with right now is when I respond to him with kindness and love, only to be yelled at. Like if I say, "Honeybee, would you like me to get you some juice?" He might scream, "NO!!!! I don't want juice! Milk! Get me milk!" It just gets exhausting after a whole day of it. Of course, not every day is like that. He still gets frustrated so very easily. If he can't zip his coat, he might rage about it for half an hour. Nothing I do in those moments helps. I've learned that the best thing to do in those situations is just sit nearby him quietly. That way he can talk if he wants, hug if he wants, or just scream it out. Then we can talk about it and do something to get sensory input into him once he has calmed down.

So many of the techniques for gentle discipline that I learned and try to use just make him even more mad. I can't never ever tell him something like, "I can see that you're very mad. It's ok to be mad." He will just get more angry. So I feel kind of like I'm flailing about without any ideas. We are working more on prevention, with the sensory diet and all, but I know people must look at me cross-eyed when he melts down in public and it looks like I'm not doing anything.

Anyway, hang in there. We'll figure it out. We're new to this, and it's a process and it will take some time. I also have a baby girl, 10 months, and it's hard because when her brother is around, I have very little time to focus on her. Also, I just get sad that she sees so much yelling and anger erupting from her brother. She has started growling whenever he does. :-(

-Lora
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#13 of 14 Old 02-24-2009, 10:39 PM
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I don't really have much to add other than I feel your pain! My 5 year old son has ADHD, SPD, and a language disorder and he is so difficult to be around sometimes! Totally sensory seeking and just really out of control most of the time. We had him at Kennedy Krieger yesterday for an autism eval (he doesn't have it), but during the eval he was jumping on the chair singing a song about "poop". It is so hard to calm him down and everything seems to get him wound up. He giggles constantly, even when I am so mad I could explode!!

Hopefully your son will qualify for the preschool b/c my savior is the fact that my son goes to school every day. He was in special ed during preschool due to his language problems and now he is in a kindrgarten for "at risk" children. He still struggles a lot with his language and that just adds to the hyperactivity and self-regulation problems.

I second what another poster said about giving him lots of sensory seeking activities around the house. My son has a big yoga ball, a crash pad, cushions he can pile up and jump on, and a bin full of noodles to sift through. I have to admit I let him do things my other kids were never allowed to do, like jump on and off the furniture!
Have you read "The Out of Sync Child Has Fun"? That has a lot of ideas in it.
Good luck!
Kristin
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#14 of 14 Old 02-25-2009, 12:11 PM
 
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So many of the techniques for gentle discipline that I learned and try to use just make him even more mad. I can't never ever tell him something like, "I can see that you're very mad. It's ok to be mad." He will just get more angry. So I feel kind of like I'm flailing about without any ideas. We are working more on prevention, with the sensory diet and all, but I know people must look at me cross-eyed when he melts down in public and it looks like I'm not doing anything.

-Lora
You probably would do best to talk to him between times of anger, rather than in the heat of the moment. For some kids, you need to find the right amount of distance while they are having the meltdown. Sometimes calming music will help too. This is where using picture stories might help him a lot. Taking about emotions too is a good start, but never when he's feeling the issue at hand.

Prevention is worth an ounce of cure too. If you can read the signals of impending meltdowns, you could head them off at the pass (at least that is the objective, the kids don't always cooperate - dd sometimes just had to have the meltdown to re-set herself). This is where having a good protein/complex carbohydrate meal prior to the outing is important, as well as frequent snacks. Start the day off with eggs and whole wheat toast and fruit rather than pancakes or cereal or oatmeal when you know you have a big day ahead of you.

Also, being aware of what his triggers might be out in public would be helpful. Is it the noise, bright lights, the crowds of people, the overwhelming sights to take in. Go to those places when it's off hours.

Mama of 3 girls: 7.5 , 6 , and 4.5
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