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*~SPD support thread for December~* - Page 2

post #21 of 141
So excited to see this!! I feel like I am so lost. DS is 27 months, and is sensory seeking. Everything & everyone must be touched. His activity level is through the roof, and expressive language is virtually non -existent except for a few words. He seems to be really smart, and understands most of what is said to him.

We started working with EI almost a year ago due to lack of language. Presently, DS is not receiving speech services because the only time the ST could see him was during nap time. After several attempts that ended in screaming and crying I told the coordinator that we'd have to try another time - that was over a month ago. We also have a special instructor that comes out. She has just started and I'm not 100% what she does. We had an OT evaluate him in May, and was told he did not have SPD. However she did not do much of an eval, and both the coordinator and the special instructor has said he seems to have it. We are waiting for another eval. Meanwhile, at his 2 year appt, the Ped referred him for an autism eval which is on a 4 month waiting list. The specialist ped reffered him for another OT eval through another agency - no EI. This place has a 3 month waiting list.

I feel like we are just hanging out in limbo on waiting lists. In the mean time our activities are somewhat limited. LLL has been put on hold since being in a big space ready to be explored overwhelms him and I spend the entire meeting fishing him out of places he shouldn't be in. We do not have any parks less than 30 min away, nor do we have a YMCA. I'm trying to find more things for him to do in the house but all he wants to do is run and play.
post #22 of 141
Leah, I'll give you an example. Kalynn was being mean to a friend that spent the night. You could tell the girl was hurt Kalynn kept saying "C'mon! Let's go play!" I had to explain to her that the girl had her feelings hurt because she said something mean to her and that she didn't want to play right then. She didn't realize that she had hurt her feelings. It seems like I have to explain to her that kids are hurt, or they don't want to play, etc.
post #23 of 141
great thread -dd is six, diagnosed with SPD since age 2. She also is on the autistic spectrum, but a lot of her issues are sensory. She goes swimming every day and has a swing in her room to bounce and swing on. For some reason she's never liked our minitrampoline. She loves painting and playing in birdseed or rice and beans.

One thing that I have found works well for sensory meltdowns - DD likes to come under the parachute with me and calms down much faster under there. The parachute has been the most successful thing I've bought her (and we've tried a lot!)
post #24 of 141
Mamas, I need help. I'm not sure how much of this is SPD and how much is anxiety/ASD or something else, but if you have any ideas, insight, or just support about this thread I posted, I'd appreciate it:

http://www.mothering.com/discussions....php?t=1169265
post #25 of 141
I'm here too. My 27 month old ODS has SPD and recently got a diagnosis of PDD-NOS, although it seems that much of the diagnosis was due to SPD. My DH deployed to Afghanistan last month so I am on my own with both my boys. ODS has auditory defensiveness but is also sensory seeking in several areas.

We have had a language jump, although it stopped already and he is regressing a bit again.....but even with that, he is echoing 2 word phrases (last week he was using 2 word phrases spontaneously).

We just had a HUGE setback with his auditory defensiveness. We had been doing brushing therapy which helped reallly reduce meltdowns due to auditory stimuli. However, YDS went through a bad stretch of a couple of weeks with his reflux and stopped sleeping and was back to screaming up to 5 hours a day. This didn't leave me time to brush ODS and now the 5-10 meltdowns a day are back.
post #26 of 141
We're a homeschooling family and my 6 yo ds just got diagnosed with SPD yesterday (mostly sensory seeking), and gross motor planning, and fine motor issues. He has problems with visual tracking and focusing, and probably has ADHD, giftedness, and visual/auditory processing problems. We're in Canada and we have no funding for OT or the other therapies. Our only hope is getting a spectrum diagnosis. Ugh. I'm feeling overwhelmed and so frustrated.

Can anyone point me to an article that I can send to my MIL who is sending me articles on overparenting and permissive parenting? I'm feeling really defensive right now. I don't care if you're a family member, friend, or neighbour...if you want to judge my parenting without taking the time to understand what we're dealing with, then I don't have the time or energy to deal with you .
post #27 of 141
So sorry, Ksenia. That interaction with your MIL sounds awful. I hope she can come to understand what's going on. Until I sent my mom the SPD checklist, she was constantly asking me if DS had enough toys or if I left him alone enough because he was "not independent enough" .

We had a really strange day over here. A few of these days together have kicked me back into worry mode, this time I'm wondering if he's also autistic . DH and I are just not clicking the last few days. He wants me to just forget about it (since we can't do anything for a while) so that I can just function while we wait, but I can't turn off my brain. I'm getting headaches, not sleeping, etc. Has anyone done counseling to deal with the anxiety that comes from worrying about your kids?
post #28 of 141
What is an SPD checklist? I am really just starting to learn and understand what kinds of toys would be good for DS and am trying desperately to get my MIL to understand that there are specific things that are good for him, and just because it falls around the appropriate age that it's not always great for him.
post #29 of 141
SPD Checklist: http://www.sensory-processing-disord...checklist.html

There are also some good ones in some books I've read. Raising a Sensory Smart Child comes to mind.

Ksenia, I am so sorry your MIL is making things more difficult for you. Maybe send her over to http://www.sensory-processing-disorder.com/ and she'll see that it's something a lot of parents are dealing with... and very real.

InMediasRes, I haven't gone to counseling for it, but I've considered it. It's a lot to process and it's hard changing your perspective about your child. When you start to realize that it's not some stage they are going through or something you can change with discipline it's really overwhelming. I'm in that place now.

My DS has had a terrible few days and I'm not handling it so well. He's added new behaviors the past few days and I don't even feel like I have a handle on the others, the ones I'm used to dealing with. I think it's the weather. He's a seeker and needs to get out all that energy, but when he gets trapped in our tiny 725 sf home all day it's hard to manage. I hate winter.


I saw a mama at the store today who's dd must have had spd or something similar. Kid wouldn't wear shoes (and it's COLD here!) and was having a meltdown about how something felt on her skin. The mama looked embarrassed and overwhelmed and I just wanted to go hug her and tell her I understand. But I'm shy and afraid of offending people, so I just gave her smile that hopefully conveyed some of that. I have so been there. As in the same meltdown in the same store. It's so hard when people are looking at you and you know they're judging your parenting... thinking if you just did something different you could "make them act the right way." They just don't understand.
post #30 of 141
I wish we could afford the time and money for counselling for me. I have a lot of baggage from growing up with a brother who had a lot of really tough behaviour issues, and his outcome as an adult hasn't been great either . Our entire family suffered because of his problems for years, and I still carry the pain of that...and I'm not even a parent, just a big sis. Now I feel like I'm being forced to confront the problems that my parents never solved. I struggle with being incapable of being the Zen mother that my child needs. And every day I feel guilty about how this must be affecting my delightful, apparently neurotypical 3 yo daughter.

About my MIL, I guess it's a blessing that she lives super far away.
post #31 of 141

what i struggle with

i am so glad this thread is here. i don't have anyone IRL to talk to about this. DH has SPD too. but since we realized this is what is happening with him, the only change he has made is taking a very mild anti-anxiety med when he comes home from work. he's really good at the blame game and getting him to take responsibility for himself and his behavior is nearly impossible. i feel like there is a lot he could do to help himself but eh doesn't. he feels like everyone else needs to change for him to be comfortable.

he is over-responsive like DS and in the evening they throw gasoline on each other's fires and it's very unpleasant around here. sometimes i cry because i hate the interaction so much.

he doesn't really understand looking for solutions, cooperation, flexibility. just like my 7 year old, but worse because he's an adult. ad once he's triggered, he's a real asshat and frankly i can't stand him and want a divorce.

yesterday they (he and DS) stopped at the store on the way home from judo class and DS freaked out because DH wouldn't buy him something he saw. DH had NO IDEA how to help him and instead just threatened him and there was big scene and he called me on my cell phone (what the heck could i do?) and it was pretty ugly. instead of just looking for a way to say yes to DS, he just dug in his heels. he told me when he came home he couldn't think of anything to do with him. WTF? he's 7. he's been like this since he was a baby and you couldn't figure out a way to make him happy in walmart???

he was going on and on when he got home and when i said something to him about looking for a different way to deal with DS he got really defensive and told me i was blaming him and blah blah blah. the same thing he says when i mention he might want to look at one or two of the books i have here.

it's really hard having a SN adult and 7 yo in my house. esp when it's SPD and oppositional/explosive personalities. i feel really discouraged and sad a lot. our therapist thinks i should write a book on dealing with SPD kids i've learned so many things over the last 6 years, but i feel like a complete failure in dealing with both of them.

i want joy in my daily life with my kids, not everything to be a battle. i need to see some light at the end of the tunnel and i don't right now. instead of things getting better as DS got older, we've just traded struggles.
post #32 of 141
Oh, umami_mommy, I cried reading your post. I'm sorry that you find yourself in such a painful and frustrating situation. Big and sending some peace your way. I wish there was more I could do.

More
post #33 of 141
Thread Starter 
umami- I can relate but for different reasons. Hang in there.
post #34 of 141
Stephenie, I've had that experience too. DS melted down in the grocery last week and I ended up leaving the cart in the middle of the aisle and carry him flailing out of the store (w/ DD in the sling, that was fun). I felt like a lunatic. The lady behind gave me a really dirty look, and if my son hadn't been melting down I would have given her a piece of my mind.

Since we didn't finish shopping that day, we had to go back the next, and there was a lady with a melting down child who was throwing himself all over the floor. I could tell she was flustered and I just wanted to say "I was you yesterday. It will be okay". But my DS just kept yelling, "He's MAD! He wants his MOMMY! He wants to be in a SAFE PLACE!" So I ran out of there as fast as I could.

Yeah, I really think some counseling is in order for me. I'm having a really hard time processing my emotions and getting OUT of my emotions and back INTO dealing with DS. DH and I talked a lot last night and made an agreement that he won't minimize my feelings and I will try to stop looking at everything as just more evidence on the pile and try to see problems with solutions instead. I think I'm already not holding up my end of the bargain.
post #35 of 141
Thread Starter 
I had started reading about Aspergers 3 years or so ago when I first heard about SPD. Anyway I kind of put it all aside really as he was so young. Well until the other day I looked back through the childhood checklist and EVERY single one of those is my DS! His issues are very much social ones. So now I am wondering..

All I know is I am going to push for some kind of an evaluation ASAP. Though I haven't heard back with a definite date for a first meeting from the behavioral therapist yet. I am going to find out first thing tomorrow though what is up with that.

In the meantime does anyones kid here have an Aspergers Diagnosis too? Any good info I can check out that you might suggest?
post #36 of 141
Thread Starter 
I just pulled DS out of the homeschool co-op for the time being until he is more emotionally ready for that setting.. Total bummer! Basically he is getting too over stimulated then acting out with violence, which yes he's been violent before, but never to this extent in a class setting..

The weird thing is since coming to our decision and talking with him about what we will do next, he is much calmer and has had no tantrums/issues at all..totally different kid. Was it really stressing him that much? Ughhhh!
post #37 of 141
Quote:
Originally Posted by rainbowmoon View Post
I had started reading about Aspergers 3 years or so ago when I first heard about SPD. Anyway I kind of put it all aside really as he was so young. Well until the other day I looked back through the childhood checklist and EVERY single one of those is my DS! His issues are very much social ones. So now I am wondering..

All I know is I am going to push for some kind of an evaluation ASAP. Though I haven't heard back with a definite date for a first meeting from the behavioral therapist yet. I am going to find out first thing tomorrow though what is up with that.

In the meantime does anyones kid here have an Aspergers Diagnosis too? Any good info I can check out that you might suggest?
SPD was our first diagnosis too, now PDD-NOS - she would qualify as Aspergers except for a slight language delay.

Trying to make the distinction between a quirky kid with SPD versus Aspergers is hard - there is a lot of gray area.

I've found some help with reading more about biomedical approaches - Healing the New Childhood Epidemics by Kenneth Bock helped us get started, now we're seeing a naturopath.
post #38 of 141
My 4yo has a somewhat Aspergers dx. officially it reads: ASD/as, SPD, motor coordination, pragmatic language disorder. Our ped neuro doesn't officially give an AS dx until 5yo and she also said that having the ASD dx will get us further with the school system.
DD has worn her costume every day since halloween except 2 days to wash it. Think she obsesses much? when I wash her costume she runs to check on it every chance she can. She looks really nervous until it comes back. The only thing she can talk about seems to be Silvermist. Shes now even sleeping in it. I gotta make some boundries somewhere on this soon. Usually I try to ride out her obsessions,but this is getting to be too much. Her sister would like to do something else also- well that is when shes not stimming and draping herself over a chair
The middle child here has a dx of SPD and "unspecified brain disorder" with a possibility of seizures. She has good language skills,but not the awesome professor like skills that my aspie dd has. She screeches lots and lots. I really think I will suffer hearing loss from this childs screeching.
then theres the baby who says "aaaaaaaa". she has already been found to be 6mo behind in speech and sensory seeking behavior. She wakes often. every 30 mins then every hour. I am a tired mama. When will she be big eneugh to either A) start sleeping or B) take meletonin. This is seriously afecting me. I have 2 that wake regularly and one that when she wakes shes up.
Then theres the naysayers... ahhh the *%$#ing naysayers! One of my naysayers has a physical disability. He says "hey they look just fine to me". I am {} this close to saying "oh yeah?! So do you? what do you want a 3rd eye? It's ASD! Not something you can just "see" it's a spectrum"
post #39 of 141
Quote:
Originally Posted by rainbowmoon View Post
I just pulled DS out of the homeschool co-op for the time being until he is more emotionally ready for that setting.. Total bummer! Basically he is getting too over stimulated then acting out with violence, which yes he's been violent before, but never to this extent in a class setting..
Yes, we've had to do that. Unfortunately, homeschool co-ops are a bad place for ds for a few reasons. 1. lack of structure, 2. adults chatting with each other (seems to be a trigger for ds) 3. other rowdy boys. I find it hard because I need to go to these things for me -- I've been dealing with a lot of loneliness and frustration due to not being able to connect with the lovely homeschooling mamas that I know. We go to one co-op that does work. It's a small group with pretty calm children, and it's in a small cozy room with no echoes or fluorescent lighting (the other co-op had both issues going on and I think that was part of the problem).
post #40 of 141
Although ds isn't an obvious fit for being on the spectrum, he is coming off as more "wierd" as he gets older (he's 6 now). We invited all of the families that participate in his homelearning class to a potluck/playdate and no one came. His only friends are 3 kids who are neighbours and who have known him since birth -- two are older (8) and know how to manage him, and they've all been coached by their parents in how to deal with him. He is often actively hostile to other children, and rarely demonstrates an ability to play with children -- even ones who he's known for a long time. He only "gloms" onto older children who wouldn't be interested in him. I also wonder about his tantrums and aggression. Our lives revolve around avoiding triggers for these, but there still are issues and it's really restrictive for our family life.

Getting a spectrum diagnosis would be huge benefit to us...our only hope of getting enough funding to do OT. We're in Canada.
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