*~SPD support thread for December~* - Page 3

[Stephenie]

Originally Posted by Ksenia

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.

It's hard when they want to play with other kids and it doesn't go well.
The AP playgroup we're part of has a strangely large number of SPD kids. Today we held a sensory playdate and it went well. It's good to have families around who understand what it is we're dealing with.

[rainbowmoon]

This sounds SOOOO much like my DS (he will be 6 in March). He loves older kids. Kids his age, not so much..

Originally Posted by Ksenia

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.

[rainbowmoon]

We are holding out hope that he will be able to return eventually when he is better able to deal with the group. His was in the "kindergarten" group but it just isn't working out unfortunately! I do understand it may not be the place for him though when all is said and done. His sister will still be going. He is fine with it all thankfully. (I actually think he is relieved as we have had NO aggression or tantrums whatsoever since making the decision to pull him out for now).

Originally Posted by Ksenia

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).

[pixilixi]

Originally Posted by Ksenia

...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. ..

Originally Posted by Ksenia

... 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...

I'm new in jumping to this thread, and I will try to post some more later to properly introduce myself, but I was just reading this and wanted to give you some This is EXACTLY how I feel, and it has made me feel a bit sad just recently. The other thing thing that makes me sad is that my son's issues are really affecting interactions within my family - especially the dynamic between ds and dh, and then consequently with me and dh. Anyone else have issues with this?

[rainbowmoon]

welcome pixi! I was just telling my DP yesterday I think I need to find a support group for ME. dealing with DS has just been SO utterly exhausting up until this point. (I was a single mom for 3 years too!) My family and friends just have no idea what is up though. They may have an inkling but I feel so misunderstood at times.

I'm glad I started this thread though! We can support each other even if it's just online!

[kalynnsmom]

Originally Posted by Ksenia

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.

While Kalynn (7) isn't on the spectrum, this really rang with me. Although she can play with other kids, she's often mean and aggressive. I don't think she understands how her actions affect other people.

And avoiding triggers really rang with me too. We are not going to my aunts (sisters on my dad's side) this year for Christmas. They don't understand that she doesn't like crowds, and why she's quiet and refuses to talk to them. They've often said mean things to her ie. I'm going to take your presents away if you don't x y or z! , which often includes hugging or talking..

I also noticed that as she gets older, her "quirks" if you will, get a little pronounced if that makes sense?

[kalynnsmom]

I noticed that one of my 3 year old twins, Ronin, has a few "quirks" too. I'm hoping it's just part of his age. Ronin is speech delayed.. For example, he gets upset when his hands are dirty. And if they're wet, he yells "Towel!!! Towel!!" I tried to put gloves on him because it's cold, he immediately took them off, and it was the one with the tag. Of course, I'll cut it off for him. He doesn't like his food touching and if something touches something else, he gets very upset..

I'm hoping that it's just him being three..

[umami_mommy]

Originally Posted by kalynnsmom

While Kalynn (7) isn't on the spectrum, this really rang with me.

my DS isn't on the spectrum either. he isn't autistic in the least. SPD and autism are totally separate conditions. though they often overlap.

i ended up not taking DS to see a crainal sacral therapist who kept insisting my DS was autistic when i described his issues to her. i assured her when she met him she would know he wasn't autistic, but she just wasn't getting it. so many people think it's the same thing. but, it's not.

[isign]

We're also having problems with DS's 'quirks' separating us from doing things with others. DS is starting to have problems in large groups, so going out to eat has to be done at odd times - we ate dinner kind of late so we could eat out and DS wouldn't scream through the meal. Now we are not doing dinner at church on Wed night. LLL meetings are out as well. Because DS looks 'normal' and has calmed down (he discovered the thomas toys at church) I get the impression people think I just can't control my kid.

DS is also a runner, which makes things a little more challenging. We don't/can't do the beach (I also have a 13m DD) without another adult. A friend has a huge piece of land and the kids play outfront. When we go, DS MUST stay in the gate, something the other kids don't understand. Last time we were there, he got out, and ended up on the other side of their barb wire fence next to a horse and the pond. We don't go there much now, out of my concern for him, and that eliminates another thing to do and another person to talk to.

[rainbowmoon]

isign I can soooo relate to the social stuff That's exactly what we are dealing with right now. He gets overstimulated and then frustrated very easily. He doesn't understand social cues and is very unaware of others at times. HE also is not really into most kids his age. He prefers to play with older kids, which was ok when he was younger.Now, because he is lacking the understanding of social cues other kids tend to get frustrated easily with him.

On top of that my DS used to be HORRIBLE with transitions. I am talking screaming fits to change diapers, get him dressed and ESPECIALLY every time we went out he'd have at least one huge meltdown maybe even two EVERY TIME (usually when it was time to leave wherever we were or changing activities). Errands were torture for about 2 years there!

He was also a super fast runner from the ages of 1-3.5ish! and the greatest escape artist EVER! One time we even had to get the Sherrif involved when he escaped my house{worst parenting moments EVER!} another time he and I were walking along holding hands on a city street with a friend and he just bolted and ran right into a busy street! heartsopping stuff! I found using a wagon with seat belts an absolute lifesaver. that and alarms on the doors. But I am soooo thankful he has grown out of those behaviors! (now he just has other issues) There is light at the end of the tunnel though is my point! At least now we can finally eat meals with others without issue 9 times out of 10.

[flowmom]

Originally Posted by pixilixi

The other thing thing that makes me sad is that my son's issues are really affecting interactions within my family - especially the dynamic between ds and dh, and then consequently with me and dh. Anyone else have issues with this?

I find it really hard that dh cannot talk to one another at all when the kids are awake. Ds always has to immediately and loudly interrupt and demand to know what we're talking about, even if we're just chatting. And in the evenings we both have tasks to do and we're like zombies, maxxed out from all the talking, talking, talking with the kids. Our marriage is in really rough shape. We went to a counsellor for a while, and she was helpful but we don't seem to be addressing the lifestyle issues that she raised as the primary problem (we're doing too much).

Originally Posted by kalynnsmom

And avoiding triggers really rang with me too. We are not going to my aunts (sisters on my dad's side) this year for Christmas. They don't understand that she doesn't like crowds, and why she's quiet and refuses to talk to them. They've often said mean things to her ie. I'm going to take your presents away if you don't x y or z! , which often includes hugging or talking..

Yeah, dealing with family has been really hard for us. I didn't go to the only family reunion that has happened in my lifetime because of ds' issues. One set of grandparents feels pretty triggered by ds, and the other set just thinks we're terrible parents and we should just 1. stop be permissive, 2. stop overparenting, and 3. put ds in music lessons. Thanks.

[isign]

rainbowmoon - thanks for the encouragement. DS is an escape artist. He's smart and waits for that opportunity to get out. We first noticed it when DD was born - he was 14 months. He'd hang out in the hospital room, stalking the door, waiting for it to open, and then he'd be gone. At church, he has gotten out several times. The first two - same night - were just from people leaving the door open. It inspired the men in our church to fufill our request of putting up a permanent gate and a dutch door. A few weeks ago, he got out again - and into the church service where DH snagged him getting on to the stage.

I feel like I'm constantly on the nursery workers (I'm on the nursery committee) to make sure things are OK for him - no juice means no capri suns, no chocolate means no oreos. It's crazy. I have told them all specifically, what he can eat. It's so frustrating that because they don't 'see' the problem, it's like they don't recognize that he has one.

[Stephenie]

Originally Posted by isign

rainbowmoon - thanks for the encouragement. DS is an escape artist. He's smart and waits for that opportunity to get out. We first noticed it when DD was born - he was 14 months. He'd hang out in the hospital room, stalking the door, waiting for it to open, and then he'd be gone. At church, he has gotten out several times. The first two - same night - were just from people leaving the door open. It inspired the men in our church to fufill our request of putting up a permanent gate and a dutch door. A few weeks ago, he got out again - and into the church service where DH snagged him getting on to the stage.

I feel like I'm constantly on the nursery workers (I'm on the nursery committee) to make sure things are OK for him - no juice means no capri suns, no chocolate means no oreos. It's crazy. I have told them all specifically, what he can eat. It's so frustrating that because they don't 'see' the problem, it's like they don't recognize that he has one.

We actually quit going to a church because the nursery fed DS foods he's allergic to. I didn't feel safe leaving him there anymore when I came in (after reminding them nursery worker NOT to feed him AT ALL) to find him shoveling animal crackers in his mouth and the worker saying "He's not going to want lunch!" Thankfully, the reaction wasn't terrible, but it made me worry. Had it been peanut butter crackers or something the whole thing could have been life threatening.

[DaughterOfKali]

Today was a really rough day. I think is getting really overwhelmed lately and his behavior is unbelievable.

[umami_mommy]

is your DS getting enough heavy work? winters are rough around here 'cause it's hard to get enough heavy work in.

[DaughterOfKali]

That's what I'm thinking, too. Plus, it's finally sinking in that homeschool is any every day thing.

[flowmom]

My 6 yo ds seems to require outdoor exercise year round. So yesterday we went for a nature walk for 1.5 hours . We've had problems this fall with having too much scheduled to get enough outdoor exercise. We have to be more consistent about it, even if it's pouring with rain or freezing. Part of the challenge is dragging my little 3 yo along (who won't wear her snowsuit, gets cold etc. ) and keeping it fun/exciting. We haven't started OT (yet?). Perhaps we'll be able to broaden our ways of getting sensory input that works for ds. Ds gets super hyper doing indoor stuff though, even at home (we let him jump off the bunk bed, use a trampoline, etc.).

I was really disappointed at the OT's gym. I don't have anything to compare it with, but I wish that it had natural/incandescent lighting rather than fluorescent, and calming colours rather than random bright vinyl colours from the equipment.

In my perfect world, ds would do OT outdoors. Does that exist?

[rainbowmoon]

you could look into equine therapy. We are hoping to go to this place too in the new year www.farmingconnection.org
not OT but definitely therapy.

DS has requested to start swimming lessons also so we are going to be starting that as well in just a few weeks.

[earthmama369]

Oh my freakin' god.

So ds (3.5 next week) has a spotty track record when it comes to sleep. The last few weeks have actually been pretty good, but all of a sudden he went back off the deep end a few days ago and has been waking upset multiple times a night. So we're both tired.

DD and I have also had a series of doctor's appointments in the last couple of weeks - 6 at the doctor's office, 1 trip to the hospital lab, and 1 attempted blood draw at a different lab, so 8 total. That's a lot of waiting around and being somewhere he didn't want to be and a lot of attention on his sister rather than on him. I get it.

Today was dd's last appointment (hopefully) for a while. And holy mother of green frogs. I am so glad I had my game face on. You know, how sometimes you just happen to be in the right attitude and mindset for the parenting challenge of the moment? Because otherwise I would have been a raving screaming lunatic. I'm trying to listen to the doctor review dd's test results and he climbs a chair and wraps the cord to the blinds around his neck. I untangle him and hold him on my hip. He starts punching me. I put him down and get kicked. Then he bit me three times. When we left the office, he tried to pull down the sticker rack because he was offered two stickers, but he's gotten obsessed with having five. Five is the magic number.



He wasn't even tantruming or particularly angry. He was just completely freakin' spastic. Looking back, I have no idea how I kept my cool. I talked to him calmly and firmly each time, set concrete expectations for his behavior, did some on-the-spot "heavy work" -- tug of war with his sister and her belt, swinging him upside down, wheelbarrow walking on his hands out the door, didn't let him take all the focus off the doctor and our conversation, kept dd in line and included -- but I'm realizing there's not much I could have done to actually change what happened, outside a babysitter, which just wasn't an option today. That's the best we can hope for sometimes, right? A decently appropriate response to atrocious behavior? I have to keep reminding myself that I can't control his behavior. Hell, sometimes HE can't control his behavior. I can only control how I respond to it. How exhausting.

[umami_mommy]

yup. exhausting. so much work. and now my toddler is turning 3 and has suddenly turned into a demon child.