Hello All,
It has been a while since I last visited and hope everybody is doing as well as possible.
I was wondering if any of your SPD kids have issues with sleeping alone. My little guy is 4 1/2 and has slept with wifey or I for the past 3 years. He use to sleep in his own bed all night long so well and then one day he had to be with us while he slept. In fact, wifey and I now sleep in separate rooms/beds so at least one of us can get a decent night sleep without my son in the bed. Needless to say, it has really gotten between my wife and I making an already difficult situation even more of a challenge.
My son is HORRIBLE to sleep with in the bed. He is constantly moving, twisting, laying on top of us, needs to be touching us while he is sleeping. This makes for a rotten night sleep. I am going on four days straight with him sleeping in my bed and I am about ready to go nuts from lack of sleep. My anxiety is through the roof. I am trying to give wifey a bit of a break in that she is tired and stressed out too.
Dr’s/therapists/family all give us different ways to try and get him to sleep in his own bed to no avail. None of them work. When we do try them he panics and screams waking the entire house. I feel beat down and hopeless with this and cannot find anything out there we have not tried. Not to mention, I am missing out on that one on one time with my wife. I miss spending time with her.
I feel like both of us are exhausted and at wicks end with him. Between his constant defiance, interrupting her and I during EVERY conversation, sleeping with us at night. We love him to death, but can’t get a break from him as bad as it sounds.
And yes…he goes to a counselor and OT every week. I just want to scream….….I just want some peace in our home.
Frubsdad

HI frubsdad

I can hear the frustration and wish I could offer to take your little guy for a night so you could have a break!

I know you said you've tried everything - can I check if that includes a weighted blanket? You might need to go a bit heavier than 10%. I'm no professional, but to me it seems like he's needing something solid in bed to give him a feeling of security - maybe his senses get out of whack when he lies down and he feels like he constantly has to check where his body is in relation to the bed otherwise he might fall?

I would try that, and maybe get a big, long bear, at least as long as his torso, open it up, take out some of the soft filling and put as much weighted filling in as possible, without making it hard or uncuddly. I would try something like that in the bed with him.

Another thing to maybe try is see if he would feel more secure sleeping on a mattress on the ground. Subconsciously he might be scared of falling off - if he realises that there's nothing to fall off of - or if he does roll off, it won't hurt, that might also settle him.

Have you raised these concerns with the OT/counsellor.

Other things - maybe get him on an iron supplement, and magnesium (restless legs). Also talk to a doctor or pharmacists about a possible melatonin supplement. I know a few people who also had incredibly bad sleepers and a iron supplement almost completely sorted the one boy (who has been flagged as ADD but hits every red flag for SPD), another has been helped by a weighted blanket and melatonin supplement.

It might take a LOT of reinforcing, but tell your son that he's not allowed to interrupt you and his mom. If he has something to say that's important, he needs to lay a hand on your leg or arm and WAIT for you to say right what's up? before talking. We did this with my son early last year as he was doign the same thing - he was just 5, so maybe you need to wait a bit, but start and see what happens. It did help us - you need to praise like crazy when they start actually doing it. The only problem we really had after that was that our boy would forget what he had wanted to say and then get upset about forgetting... but that also passed.

Hang in there - and book a babysitter if you can. It's really important that you and your wifey get time to breathe and think about each other and talk without the stress of constant interruption...

I can hear how desperate you are and wish I knew the answer that would help your son specifically. Alas we still have 2 kids (3 & 1 year olds) not sleeping through the night, so we're also trying the above for the middle one. Seems like it's like most things - try everything until you find the combination that works for you and your family.

If you go more than 10% with a weighted blanket - weighted blankets are reasonable up to 20% of body weight, but should not go above 20% of body weight.

(05-10-2013, 12:44 PM)Tuttleturtle Wrote: If you go more than 10% with a weighted blanket - weighted blankets are reasonable up to 20% of body weight, but should not go above 20% of body weight.

Thanks Kate and TT. It all comes and goes in waves. There will be a couple months where we think...OK...all of the therapy...ot's....compression vests....blah blah blah is working. Then all of a sudden it goes to hell in a hand basket fast. We both wonder where we went wrong...why the sudden turn in behavior. Some days it is like we are wearing concrete shoes and the water is at our necks and rising. Might I add...the parents and inlaws who want to give us advice are driving us CRAZY. They all have an opinion and my wife and I are really tired of hearing it. As if things are not difficult enough, we have them chiming in..."maybe you should do this...or maybe you should do that". That makes us feel like really good parents...let me tell ya!!! If you cannot tell, that is me being facetious. They go on the internet and type in SPD and seem to have all the answers for us....as if we have not done so a million times over.

We send him over there for a night and they comment how "normal" he acts and perhaps we are looking into things a bit much. And "perhaps he needs a good spanking." Yeah...that worked really well when I was a kid...no resentment there!!! What they don't understand is that they are giving him 100% attention all the time and let him get away with anything. Not to mention no sibling to fight with about mundane BS.

Thanks for listening to me vent. I wish there was more I could do to help my wife. I am at work all day while she is at home with my son which is not an easy job. I know she is sad and I don't know what more I can do than I am currently doing. I try to intercept him at night when he wakes so she can at least have a break from him while she sleeps. Although some nights I do not hear him and feel bad in the morning when I hear him awake at 6am.

I hope things start to become easier for all of us soon. I am going to look into the suggestions given regarding sleep, interuptions, etc....thank you both again.

BTW...can anybody suggest a certain weighted blanket? Are some better than others?
Best Regards,
Frubsdad

Frubsdad, I think you need to talk to the parents/in laws and tell them while you appreciate that they are trying to help, you are THE parents, and you are doing everything humanly possible, and the constant suggestions undermine you rather than aid you.

I put together a little card with the definition of SPD and how it presents behaviourally, which I printed out and laminated and handed out to the in-laws and my mom and sister-in-law. I'm not sure it really helped, but they are asking more questions and make less suggestions ;P

I'm not sure about a specific brand of weighted blanket. We are having one made by a seamstress, it works out a LOT cheaper than buying online, in S.Africa the difference is R150 (seamstress) vs R800 (online - excluding postage). I'm not sure if you could get something at a comparable price where you are, but I'd give it a try.

As far as I've seen with the copious amounts of reading I've been doing since our boy was diagnosed - the ebb and flow is a characteristic. One story I read (maybe here, maybe somewhere else?) said a little boy was driven to distraction by a loose tooth. He was much better after the tooth fell out. It seems like just about anything can set them into a high-tide kind of patch...

I wish I knew the answers... I really do- for you and me both! I read and read and there are so many things that claim such amazing results and blogs that say this is the one, this is the *cure*... in general there seems to be a common theme that anything that works the brain, especially in ways that promote rythm, timing, and co-ordination between the halves of the brain, is likely to have a good effect. Interactive metronome, Brain balance, Brain Gym, there's another to do with neuro-music therapy I think.
I'm waffling, sorry. I think what I'm trying to get to is - if it's at all possible, can you try enrol your son in music classes(kindermusik maybe?) or Brain gym? I think it might also help your wife to get out during the day. In my unprofessional view, it sounds like she's a little depressed, and might benefit from some adult interaction and getting out and talking and interacting with other people on a regular basis while someone else is working with your son - it's less formal than counselling or OT, and more social.

I'm really so sorry you're having such a hard patch and can only hope things take a turn for the good again soon.

Oh - we're trying to find out if the Feingold program is available here, but I really think it could be beneficial for anyone and everyone to get off of the nasty colourants, preservatives and additives. It can't hurt... Not sure where you're based (sorry if I already asked!) but if you're in the USA I think it could be worth trying? LAC has recommended it a few times, so might be worth checking with her

Weighted blanket! I have had so many parents write to me after buying one from me, saying it is the first time their child has slept through the night in months! When my son was younger he would have night terrors and wake up screaming, now they have declined to nightmares and not too often anymore. What about a reward for making it in his bed for one night, then "let's try for two nights..." It is so hard to say because you do not know what is going on in their body at that time. Have a camp out in his room with him one night, let him see it is ok. I would still try a weighted blanket. I know when my son sleeps with me he is ALL over the place!!!! Never stops moving! I know what you are talking about!!! Just another rough patch in the SPD day, this too shall pass.

(05-15-2013, 07:38 AM)heather40 Wrote: Weighted blanket! I have had so many parents write to me after buying one from me, saying it is the first time their child has slept through the night in months! When my son was younger he would have night terrors and wake up screaming, now they have declined to nightmares and not too often anymore. What about a reward for making it in his bed for one night, then "let's try for two nights..." It is so hard to say because you do not know what is going on in their body at that time. Have a camp out in his room with him one night, let him see it is ok. I would still try a weighted blanket. I know when my son sleeps with me he is ALL over the place!!!! Never stops moving! I know what you are talking about!!! Just another rough patch in the SPD day, this too shall pass.

Hello Heather...thank you for taking the time to reply to my post. I am thankful for a place like this where we can give a helping hand when needed. I spoke to my wife and she plans on chatting with his OT to determine the exact weight needed. One question I have it how do you wash these things? My kids have a history of barfing in bed when sick. My concern would be cleaning the blanket without damage.

I really like your idea of a campout in his bedroom in that he's been asking me about going camping. And yes...my son is like having a wolverine on speed in bed. I am pretty certain he runs a marathon every night in his sleep. We had a good day with him yesterday and grateful for that. Sometimes I think he can sense when we have nothing left to give and are at wicks end. I love my little man so much and really proud of his accomplishments thus far. It must be tough knowing you are a bit different and trying to find your place in this crazy crazy world. Again...thanks for the information.
Frubsdad

Our OT told us weighted blankets or stuffed animals should be 10% of body weight.

*** just want to retract what I said previously in light of all the more experienced people saying no more than 10%. By "more" I meant maybe 100g... But think it's best to go with what the professionsals say.

The one's I make I tell everyone to wash on delicate and line dry. They haven't fallen apart yet! lol If they are all made the same they have little plastic beads in them and can melt in the dryer. I wash my son's the same.