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Son just diagnosed - new to forum
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boymomxod Offline
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Posts: 1
Joined: Jan 2017
#1
Son just diagnosed - new to forum

Good morning! I'm new to everything pertaining to SPD so please bear with me as I'm learning terminology, etc. I basically joined to help increase my husband and my knowledge around SPD and for overall support. My six year old son was just diagnosed with severe sensory feeding issues as well as vestibular and proprioception (sensory craving) dysfunction. We started OT for his feeding in November but we're still on a waitlist for his overall OT to help with his vestibular and proprioception issues. My husband built a little sensory area in our basement (swing, trampoline, rope climbing, etc.) to try to get some of his sensory needs met at home while we wait for OT to start. We're really struggling with his sleeping (sleep has always been an issue with him) as he wakes multiple times at night and struggles to get back to sleep. I'm wondering if anyone has had any success with helping with the sleep issues? His reason for having trouble falling asleep and staying asleep is he seems to have intense fear (especially with windows) and struggles to be in any room by himself (I still need to stand in the bathroom with him or at the very least outside of the room with the door cracked). We have black out curtains on his window in his bedroom and his bed is as far away from his window as we can possibly get. I have to stay in the room with him until he falls asleep and this is also the only way I can get him back to sleep at night. My husband tries to help but my son absolutely refuses anyone but me. I'm not so concerned about my sleep, I'll do whatever I need to for him to get the sleep he needs, but I'm wondering how I can possibly help with his fear issues. It breaks my heart when he runs in our room shaking and visibly/physically upset. It also effects how he eats and his overall mood the next day (obviously - I'm a grump when I don't get enough sleep either). We discussed a weighted blanket with the OT during the evaluation but she suggested we hold off due to him being underweight and the concern around stunting his growth. Any other suggestions would be greatly appreciated. THANK YOU!
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thelittleoneh Offline
Newbie

Posts: 2
Joined: Nov 2017
#2
RE: Son just diagnosed - new to forum

Hi I'm new here as well, My son is 3 yr old and was officially diagnosed a few months ago. We had sleep issues for as long as I can remember. We finally had a breakthrough when my older son (7 yrs old) started setting up all their stuff animals around the bed (they have bunk beds) to stand guard. We also have an electronic sound machine (it has 50 different fan or white noise choices). That seems to drown out any house noises that would normally bother our little one. He also sleeps with a weighted duck stuffed animal that has lavender flowers inside it. We thought about a weighted blanket as well be held off for the same reason - the weighted stuffed animal seems to help - he can hug it and squish it and since it is weighted it has a bit more resistance than a normal pillow or stuffed animal.

I will confess when we are going through a really rough patch (iE holidays, traveling, etc) we do use a pediatrician recommended dose of Zarbees melatonin. It does help him fall asleep and seems to get his body on track.

Best of luck! I feel your sleep deprived pain.
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Likeemence Offline
Newbie

Posts: 1
Joined: Nov 2017
#3
RE: Son just diagnosed - new to forum

hey there people... my story seems to similar to yours. my son who is currently 6 (going to be seven in 3 months) has been diagnosed a few weeks ago and i'm not sure what to do now... the reason i'm here. we have already tried some treatments but so far they don't seem to help. wanted to talk with other people about this. if you have any updates, please don't forget to post them here.
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thelittleoneh Offline
Newbie

Posts: 2
Joined: Nov 2017
#4
RE: Son just diagnosed - new to forum

Hi Likeemence,

is your son a seeker or an avoider? and in what areas. My son is a touch avoider but a deep pressure seeker (it makes it really tough sometimes)

The OT that evaluated my son recommended reading "the out of sync child" by Carol Stock Kranowitz. It really help us nail down what would help and what wouldn't. there is also another book "the out of sync child has fun" - that one is filled with age appropriate activities that are broken down by need (seeker, avoider, touch, smell etc.)

I hope this was helpful.
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