SPD Parent Support

Craig Walker

The Life Support and "VENT"ilation Room

Just want to let off some steam, have a safe place to scream and/or just have someone listen without judging or giving advice? This is the place for it. Here, you can do all that and simply get our support, our understanding and our sympathy. Sometimes, you just want to unload your burden, be heard and get some validation. No advice will be offered unless it is specifically requested.

So, we're listening... lay it on us...

"one of the most profound ways you can show your love is to simply listen; don’t fix, don’t defend, don’t agree or disagree….just listen."

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MTPermalink Reply by MT on March 21, 2009 at 12:24am
Our son is in the process of being diagnosed with SID. We find out this week, but his OT says he definitely has the signs, and his therapist concurs. He is four years old, and this has gotten progressively worse (?) more prominent (?) anyway, I just spent the past 25 minutes putting him to bed, not getting the blanket in the right position, etc, with blood curdling screams the entire time..only to have him say "I just want to go to school!" He doesn't attend daycare right now, or preschool yet, as he is not potty trained..a whole other ordeal... I just needed to vent..............tonight was just hell, and this is the third this week.....at least I wasn't bitten or hit..
Craig WalkerPermalink Reply by Craig Walker on March 21, 2009 at 12:49am
Dear MT,

OMG, I can totally sympathize with you. My daughter has always had difficulty sleeping. And, like your son, everything has to be perfect, the right blanket or combination of blankets, in the right placement, the fan has to be on or the ringing in her ears bothers her. I've heard from adult suffers of SPD that sleep disorders are common. But, I haven't found a lot of information on it or how to deal with it. I've had some success with late night baths with Epsom salts, soothing music and bedtime stories either read aloud or on a CD. The worst nights always involve me losing my cool - everything ratchets up from there.

Potty training was difficult as well. She was potty trained at one point, only to have a major and long-term setback. The setback happened as we got into preschool and things were very stressful for her. I look back on that time and believe that she just gets overwhelmed with stress and everything falls apart from there.

I hope that things will get better for you and your son very soon. Occupational Therapy helped us immensely. Hang in there and vent all you need. We understand and support you.

Many Blessings and hopefully, sweet dreams for you and your family,

Craig
MTPermalink Reply by MT on March 21, 2009 at 12:55am
Thanks for writing back. Even trying to answer him tonight was the wrong thing to do..he is asleep now, of course.

I said to my husband "we forgot to ask the therapist something--How do we keep our sanity?"
My husband works nights, so most nights its just Gabe and me, and then the other two divide the consistency, I would guess, because I am at work one of those evenings...

So good to hear another parent with potty training issues too.!

We are blessed. We have a beautiful little boy with a wonderfully smart little mind, and just needs help getting it all in place with the world..

Blessings to you and your family also!!

Marise
Mary GardnerPermalink Reply by Mary Gardner on March 24, 2009 at 8:12pm
Hey MT:
Sorry to hear about your stresses. I would recommend if you can to keep a diary. You're not going to believe it now, but one day, things WILL be better. Have you tried the brushing method at all? Some of these kids also have OCD, and we have that at our house. It can be a nightmare...but somethings you just learn to tolerate. You might want to have him professionally diagnosed by a neuropsychologist to find out what else might be going on. After we did that, we had a VERY clear picture of what needed to be treated.. from auditory processing to OT to diet, etc.. we've done a lot of stuff.. and we'll continue to do more when we can.
Please make sure you're taking care of yourself.. and working out as much as you can. My hair turned GREY in a very short time from the stress like you're going thru.. and now that things are calmer at age 8=9, I regret not taking better care of ME during ages 3-7. Of course no one will SEE the grey.. but it takes a lot to color it b/c it was from SHOCK and not from aging.

So, do what you can to get to the gym and eat well, and reach out and get others to help if you can. YOU are important too.. and no one is doing to give you this break.. you're going to have to just TAKE it! Good luck and let us know if you have questions, etc. :) mary
MTPermalink Reply by MT on March 27, 2009 at 9:28pm
Thank you both!! Gabe is finally going to be assessed by his therapist--she was waiting for him to get used to the surroundings and such from her office, getting to know her, etc. She said today she believes that he is in that Autism spectrum, so its not just a sensory thing, but, as so many kids--more than just one thing.

I do try and take care of myself, as does my husband. I am a pastor, and so I am watching over a lot of folks..but have had to change how I pastor in light of Gabe and what our lives are doing...oh, and I just blame the grey on church! :)
Misty McClamrockPermalink Reply by Misty McClamrock on April 3, 2009 at 9:15pm
Hi I just wanted to let you know I have been there too!! Our sleep struggles would last from an hour to four or five and at one point my Lily was only getting about 3 hours of sleep a day!!!!! I found what I swear is the miracle drug for her and it is all natural I by far am not endorsing it just giving it as a suggestion. We give Lillian 5mg of Melatonin a night about an hour before bedtime it helps her brain slow down just enough for her to actually go to bed without a fight. My sister uses it with her ADHD son as well and we both have been using it for years with no bad side effects. You can find lots of info about it online it is definitely worth looking into and its very inexpensive and available almost anywhere!! I hope this helps you somewhat. We have used the herbal supplement with a bedtime routine not on its own and it seems to have done the trick for her she actually goes to bed by 9pm now and sleeps thru the night!!!
MTPermalink Reply by MT on April 15, 2009 at 2:38am
I may ask his therapist about this..bedtimes are when the biggest episodes happen....
Kate PekarPermalink Reply by Kate Pekar on March 31, 2009 at 5:21pm
Hi All,
Just needed to vent...most of the time I am okay and can be upbeat and keep my boy on his senosry diet but when faced with an especially difficult week (this week, death in the family, stomach flu in our home, intense presentation to plan, unexpected house guests due to the death), I can't keep a lid on the sensory needs and then everything is worse... I guess this is terrible but sometimes I wish the sensory needs would just go away for a few days!!!!

~Kate
Craig WalkerPermalink Reply by Craig Walker on March 31, 2009 at 6:53pm
Hi Kate,

Hang in there. I so understand where you are coming from. And, I am so sorry for your loss. It seems like we have to always be "on" for our kids and everyone around us. But, try to remember that you have a right and a need to unplug and let go.

And, yes, there are many times when I wish that the sensory issues would magically disappear. It's quite normal to feel that way.

Be well and take some time to yourself when you can.

Many Blessings,

Craig
Kate PekarPermalink Reply by Kate Pekar on April 1, 2009 at 11:48am
Craig--

Thanks so much for replying. Sometimes just having one person understand our unique family can get me through the day snd seeing your reply did that for me today.

All the best,
Kate
Craig WalkerPermalink Reply by Craig Walker on April 1, 2009 at 12:18pm
Kate,

You are quite welcome. It is so comforting to know that we are not alone in this. That's what this site is all about.

And, thank you for brightening my day with your heartwarming reply...

Many Blessings,

Craig
Elle SaidofPermalink Reply by Elle Saidof on July 24, 2009 at 6:09pm
Hello.
I've been crying so much today, its so hard. My 3.5 yr old curious, delightful, energetic (or should i say ENERGETIC) little boy was recently dx with SPD. Ive known something was off for a while. He is the sensation seeking type, always moving, hits and bites all the time unprovoked, always something in his mouth, cant sit still, overwhelms everyone... Somethings he comes up to me and my natural reaction is to flinch bec Im so scared he's gonna bite me.. Thank Gd my husband and I are on the same team, though I still feel so alone. He's started therapy soon. Does it really work? Will he ever be able to interact calmly with other kids? Will he be OK in school? I'm so scared, and sometimes I get so frustrated with him, I feel so guilty.

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