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New and need help and support
Author Message
mlara00 Offline
Newbie

Posts: 4
Joined: Jan 2011
#1
New and need help and support

I have a eight year old son who has SPD. He was diagnosed when he was about three. I feel like I have not received very much support or help. They provided my son with very few OT sessions and then I was sent on my way. My son has had so many problems that I did not realize were related to SPD until recently. I thought he had outgrown the majority of his problems but I am now learning that as he gets older, he is suffering from other problems. He has always needed a lot of help with school and does not do very well academically. He has to re-learn things over and over. His emotional outbursts and sensitivity are getting more noticable and unusual for his age. He is having problems with school mates being really mean to him and his sensitive reactions are making them shun him. I don't feel like his teachers have been very supportive and none of them even know what SPD is. He has so much trouble understanding things and he has a lot of trouble with expressive speech. Together, these make him not preceived very well by peers socially. He has an IEP for auditory processing disorder in which he receives speech services. I don't feel like I am addressing his problems well enough. I am going to seek out a private OT service but I don't know if I need a diagnosis of SPD. I am struggling with guilt, depression and anxiety and I know I need to fight this so I can use my energy to help my son. Does anyone have any advice or maybe in the same situation?
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LynnNBoys Offline
Regular

Posts: 277
Joined: Dec 2010
#2
RE: New and need help and support

I almost could have written your post! My son will be 10 in May. He was diagnosed when he was 6. Luckily, he receives many services from his school. He received regular OT and motor breaks throughout the school day. He also gets academic help from the special education teacher. He gets extra time when he takes tests. He goes weekly to see the school social worker. But even with all that help, it can be a struggle some days. I feel like we're making progress, one step at a time, then suddenly he's/we're taking two steps backward. He'll do well for a while, then suddenly something will trigger a meltdown. My son has a very hard time with transitions and changes to his routine. In December, my husband was away for two weeks for business. That was enough to trigger my son. We went from meltdowns maybe 3 times a week to 3-5 meltdowns a day. His anxiety increased again. He had to know where I was every second of the day (when he was home and not at school). He would call out to me in a panic if he didn't immediately find me.

Now that he's older, he is noticing that he is a little different. It's heartbreaking when he asks me, "Mom, why don't I have any friends, why doesn't anyone like me?" I had tried to explain SPD to him at one point, but he wasn't ready to hear it. He just kept saying that "THAT's not me, I'm not like that."

I would try to educate his teachers. I bought a book from Amazon and gave it to the school for a reference for them. http://www.amazon.com/Answers-Questions-...098&sr=8-1 I also printed out a few articles I found and gave them to his teacher. I emailed his teacher 1-2 times a week. I talked to her about what things help my son learn. What things trigger him. Have you seen this website: http://www.sensory-processing-disorder.com/index.html ? That has a lot of helpful things too.

I found a private OT service and they helped me *get* the SPD diagnosis for my son. And then I had him go to weekly OT sessions over the summer. It was hard because they didn't take our insurance (I'm in USA) so it got to be very expensive for even those few months. The OT definitely helped him. I do try to incorporate gross motor activities as often as I can. We have a trampoline for him to bounce on, I ask him to carry his dirty clothes basket to the laundry room. The OT had suggested doing the wheel-barrow with him (hold his legs steady and have him walk on his hands) to help his low muscle tone.

I also struggle with guilt, depression, and anxiety--and low energy and low motivation. I was diagnosed with depression and anxiety in 2006, but sometimes I wonder if maybe I am SPD since they can be a part of it as well.

BIG HUGS to you and your son! Hang in there. You are a good mom to your son.
Lynn Shy
mom to 2 boys, one avoider and one seeker
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mlara00 Offline
Newbie

Posts: 4
Joined: Jan 2011
#3
RE: New and need help and support

I am so very grateful for your response. Your story is so very similar to mine. My son seems to have more academic problems though which has brought on many meltdowns at home and in the classroom. He also has very low self-esteem because he is starting to recognize he has trouble. He tries so hard but has to constantly re-learn things.

My son has also starting seeing a social worker within his school which has helped with some social situations he's had trouble with. He is eager to have or make friends but he gets emotional quickly and his processing is very slow so kids his age don't seem to have respect for him. It seems like he will have some success at making a friend but then they kind of ditch him because they start to notice he is different. My heart breaks because he has cried to me "why do my friends all go away?" I feel like he is a bully target and is easily teased which brings on many emotional meltdowns. I can totally relate with you in taking one step forward and two steps back. As soon as I feel like we have made some progress, I get a glimps of his handwriting journal or I see how much more his peers are progressing academically, socially and verbally and I start to panic about his future.

I have been reading so much more about this disorder and I too have seen some traits in my younger son but not as severe. He has more problems with transitions, new situations and is a sensory seeker. He had minor trouble with clothing, vomiting when food did not look appealing and meltdowns. My younger son also seems to need to know where I am at all times. He just turned 6 so I was thinking it was just because he was young and still wanted his mom. Academically he has been doing very well so I too have not felt the need to seek help for him.

Then there is me. I had many problems growing up with seperation, transitions and social situations. I guess I never thought that I might have it because I did not have the problems with clothes or being touched but I do have a hard time with loud noises sometimes. I have trouble speaking my thoughts and organizing my sentences to this day. I do much better at writing.

I have so much guilt about what I haven't done to help my son. I keep wishing I would have held him back in kindergarten. I felt he could have been help back due to his immaturity but he was so tall and big for his age. He is still on the tall side but has evened out more with his peers and now I have regrets. He seems to get along better with younger kids and I think he would have fit in better. I also have a reoccurring thought that I caused my older son to have SPD. I did not know I was pregnant and I drank alcohol at different times during the third through fifth weeks. I have read that this can cause SPD. Of course as soon as I found out I did not drink again and I did not drink alcohol with my second son. I spoke with a docotor who specializes in SPD and he assured me that it is more than likely not the cause but I feel like I will never really know and it is very disturbing for me. I have felt a lot of guilt and depression because of this. I realize I need to get rid of this negative energy and use all of my energy toward helping my sons. I am now reading some books as well as more counseling. Thank you so much for the tips and books suggestions. I just purchased some new books and the Questions and Answers for teachers was one of them. I plan to make copies and give it to his teachers.

Thanks for listening and thank you for your help and support!
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LynnNBoys Offline
Regular

Posts: 277
Joined: Dec 2010
#4
RE: New and need help and support

I'm so sorry to hear about your son's struggles. It's hard to be the parent and want to "fix" everything but not knowing how or not being able to fix it for them. My older son has very low self-esteem too and it scares me as he gets closer to puberty. I worry about him being bullied when he's older. His current school has lots of anti-bullying programs and firm rules against bullying. But who knows about high school. And after all the recent news about bullied teens killing themselves, there's even more to worry about.

He started seeing a therapist/psychologist outside of the school last year. They also started up a social skills group there that he joined 6-8 months ago (there's two other boys in the group, one with autism). We've cut back on seeing the therapist, but he goes to the social skills group regularly. They teach them how to be a friend, how to define a friend (my son has a very hard time knowing what makes a friend), which behaviors might be considered rude, etc. It seems to be helping him since he really has no clue how to act in many social situations. I've heard him say things to his brother that I'm sure came from the social skills group.

Can you talk to the school about getting more help academically? Can they add to his IEP about the other things he needs help with? Have you or they talked about possibly holding him back? It's a very hard decision about holding back or not holding back. Especially when he is tall for his age. People would expect him to act older than he is. Our school system's cut-off date for Kindergarten is December. So some kids could be 4 when they start Kindy. A few people send their kids who have late birthdays and others wait another year. If my older son had a later birthday (his is May), I would've held him back since he wasn't ready socially. My younger son is September, so he's one of the younger kids in his class. But he seemed very ready, more verbal and social, and also tall for his age like your son. He's in 1st grade now and so far he's doing okay. Though he did ask me/whine to me, "Mom, why did you make my birthday so late?!" LOL

Please don't beat yourself up about your pregnancy with your son. You did not cause this. I tried to do everything by the books with my first pregnancy. I cut out junk food, ate healthy, snacked on carrots, did everything you're supposed to do ... and my water broke at 36 weeks. I always felt very guilty that I did something wrong to make him come a month early. Then with my next pregnancy, I miscarried, so even more guilt that I did something wrong. My second son came at 39 weeks. Then next was a surprise pregnancy which ended in m/c. That one sent me into deep depression. And after we had the SPD diagnosis, I read about a connection between SPD and preemies, so the guilt returned. It's a struggle for us parents.

I'm the same way, trouble speaking what's on my mind, organizing my thoughts. I have no skill to tell a joke or a story. I hate talking on the phone and will still "rehearse" what I'm going to say on the phone sometimes. I do better with writing, had always kept a journal growing up.

Thank you as well! I hope we can chat more!
Lynn Shy
mom to 2 boys, one avoider and one seeker
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mlara00 Offline
Newbie

Posts: 4
Joined: Jan 2011
#5
RE: New and need help and support

Thanks Lynn for the support and advice. I just remind myself to take one step and day at a time. I do feel I have many things to be grateful for so I need to remind myself of that on a daily basis. Someone once told me "you need to focus on the things your son can do and is successful with and not so much what he struggles with" It is hard advice to follow sometimes but it does really put things into perspective.

It really sounds like we have had many of the same journeys in our lives. I have done the rehearsals before telephone calls too! I know it isn't funny but I just had to laugh about that. What is sad is that I rehearse and I still mess up what I wanted to say! Ha Ha

Take care and keep in touch!
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beck7422 Offline
Regular

Posts: 342
Joined: Jun 2010
#6
RE: New and need help and support

My mom did everything "perfectly" during her pregnancy, I was full term, and she breast fed me. SPD strongly negatively affects my life. Please don't blame yourself for something that such a high percentage of people have. In another time frame SPD would be a strength that would lead to an increased chance of survival. Which is why whatever gene combinations that can trigger it are so common.

On the friend thing. This is something you can help you child with. Tell them to befriend any other kids that seem to be outsiders or treated badly by the others. If they say no one else is, tell them they are blind (almost all kids get bullied or treated poorly at one time or another). Let your child know which days it is OK for them to invite a friend over to your house afterschool to hang out. You can provide activities, but a soft red ball that they can throw around outside is probably best to start with (have your child pick out the ball).

I got the bullies to leave me alone by making packs of all the freaks, geeks, and outsiders. We outnumbered the bullies by quite a bit and it gave us all safe people to hang out with.

It is especially important to befriend anyone that seems "creepy" or "annoying". They are the ones that need a friend the worst and have the hardest time obtaining friends. They are usually incredibly loyal and go out of their way to help you when you need it.

You can help your child by practicing with them ways to open up conversations. I tend to use jokes or silly statements. For example when standing in a line ask the person in front or behind you "so how many years have you been trapped in this line?" The statement is rediculous, but it tends to break the ice. I asked one kid if he was weird. When he said "yes", I told him that was good because I only befriended weird people. Smile
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Sila Offline
Forum Moderator
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Posts: 115
Joined: Oct 2010
#7
RE: New and need help and support

I've got the funniest of stories to tell when it comes to meeting friends. haha. x3

I was one of those people, outcast by everyone in the school, unpopular, afraid to talk to anyone for fear of being teased or picked on again. I hung around the teachers most often than not, because no one dared to tease me with a teacher right there.

Well one of the days during middle school I stopped by a teacher's classroom after school, to talk with her about a quotation she had on a white board outside of her portable. Inside I saw this bouncy little blonde girl who was talking about anime- something I was interested in at the time. Someone in there tried to make fun of me, so she backed me up and told them to cut it out. I kinda clung to her because that was the first time someone ever tried to stick up for me. She knew that I was the oddball out in school, and she actually wanted to befriend me. (Little did she know she'd be chasing my bullies around the school just two days later because they were still teasing me >.> )

Few days later, she introduces me to all of her friends. I walk up, and there's one girl running around with sweaters all over her arms saying she's a human coat hanger. There's another girl sitting against a pole reading a book, glasses tucked up against her nose and wearing clothes that were just as raggedy as mine. Then there was my friend Ashlee, with her head in some dude's lap, sitting next to this emo-looking girl who looked mad at everyone.

These people ended up becoming my best friends, 7 years later, and I'm still with them. <3
<Mako>I see one sila Tongue caring loving girl whos a lil shy + scared on the inside but has a giant heart ^-^
Heart
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Highly suspected/Being evaluated for: ADHD & Autism.
Also have SPD, GAD, and an annoying speech impediment.
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mlara00 Offline
Newbie

Posts: 4
Joined: Jan 2011
#8
RE: New and need help and support

Thank you for the tips from a first hand percpective. I have been scheduling some "playdates" with some kids from his school. I even asked the school social worker who some nice kids were that would be good to pair my son up with. So far it has been working out OK. I have to just take one day at a time and deal with these issues as they come. It is weird because it seems like things will go ok for a while and then everything happens at once. I have recognized this for a while. I wonder if some kind of stress is setting things off.
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I have SPD. Offline
Regular

Posts: 14
Joined: Feb 2011
#9
RE: New and need help and support

You don't need a diagnosis of SPD to get OT. SPD isn't even a "real" diagnosis, since it isn't yet in the DSM. I think you are doing an excellent job. Schools often don't offer the best services, so I think it's a great idea to seek private OT.
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