I am at a loss with my out of sync child. Please, help me if you can.

[Pink Fairy]

I don't want to leave this up forever out of consideration for my boy.

 

Thank you all so much for your advice!

Edited April 30, 2012 by Mamabegood

[wapiti]

A "textbook Out of Sync child" is a child with Sensory Processing Disorder. Consider seeking an eval with an OT experienced with SPD. While it's true that sometimes younger kids make more progress faster with OT than older kids, that doesn't mean it's not worth pursuing.

 

However, I'm not sure that what you are describing is a sensory issue or another type of issue, such as anxiety/depression (not necessarily that, but that's just an example). In any case, I'd seek an evaluation of one sort or another.

[Wabi Sabi]

I'm so sorry. That must be incredibly heart breaking and frustrating at the same time.

 

Have you ever considered any sort of professional counseling or therapy for him? Some sort of evaluation? Perhaps mention it to his pediatrician? Even if it was just said for the shock value, I think his comment about killing himself warrants some intervention.

 

Good luck.

[J'etudie]

.

[Pippen]

I believe your ds could still benefit from OT for sensory issues if that's an option for you. We did OT at 8.5yo. For us, The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross Greene was invaluable for handling the meltdowns.

 

I understand exactly what you mean that it's not an obedience issue. :grouphug:

 

I second this book, and also the suggestion to expand evaluations to consider more than just sensory issues going on. A pediatric neuropsychologist would be a good option for a child of this age. They do a very thorough evaluation, and then refer out if results indicate more specialized assessments in specific areas.

[MomatHWTK]

We medicate our son and he gets therapy. Is your child approaching the tween years? His mind is going to start growing quickly and with it all those "misfiring" neurons. Our son specifically asked us to take him to a doctor at that point. :grouphug:

[bettyandbob]

OK I remember age 10. Age 10 was a year we had go through a complete readjustment. It seemed like we had our SPD/ADD/NVLD child figured out and things escalated and exploded.

 

We continued monitoring diet (gluten free, no artificial flavors or colors). We continued with regular exercise. I believe this was when he started TKD and he took it really seriously (TKD would have been terrible for him at a younger age). However, we were still having problems, so we sought out a new medical eval, this time through the Amen Clinic. The results of that eval had us try anti anxiety medication, which worked well for a few years. I think our close watch on keeping a "clean" diet for ds and a decent amount of exercise made it possible for ds to respond to very low doses of the meds.

 

It is my understanding that while pursuing sensory therapies at younger ages is good, you can still do it with an older child. I do not think the "window" to which you refer is shut. You can adapt the sensory diet activities to be age appropriate.

 

I will implore you to clean up your own diet and really adhere to an exercise plan yourself. Really pushing yourself to be healthy and making your efforts in that area a priority is the key to getting through this difficult period. And you will need to keep it up through the teen years. If you do not do this, you may find you are emotionally and physically unavailable to other members of your family. This type of child will burn you out and you can't let that happen.

Edited April 27, 2012 by betty

[ssavings]

I totally get that it's not an obedience issue... :grouphug:

 

Has he been professionally evaluated and diagnosed? I ask only because I know of situations where something that presented like SPD was a different issue entirely (not behavorial! Just different, and requiring different treatments, than SPD.)

 

Threatening suicide, even for shock value, to me would warrant some sort of evaluation and therapy... Do you have a good pediatrician you can ask?

[inmyopinion]

My child also did OT at 8.5 for one year and it made a difference. Just having someone to bounce ideas off of was great, and to talk me off the ledge. I also encouraged my son, in front of the OT, to discuss any recent episodes with her during his time and made sure that he had time to speak with her about anything he wanted to "work on". He is still my most challenging child and I feel badly for him b/c often times it is not a obedience issue as he is just unable to reel himself in. He himself does not always understand why he feels and acts like he does. After a break down has passed, I will often lay down with him and just hug one another, and reenforce that I love him.

 

It just sometimes gets so tiring. . . . . .:grouphug:.

[amo_mea_filiis.]

My ds throws around killing himself when he is really mad. When hes calm, we talk about it and he always says he didnt mean it, but that was all his brain could say.

 

I would absolutely go for an ot evaluation (at a minimum). My dd just started ot a few months ago and shes 11. Kids with issues and puberty do not mix well! Dds issues are getting harder to manage.

[justasque]

1. Is he getting a meal or snack that includes protein at least every three hours? Low blood sugar can cause meltdowns.

 

2. Is he getting time to wind down every afternoon? Time with a minimum of external input or stimulation?

 

3. Is he getting "outside play, every day" to get the wiggles out of his system before the afternoon?

 

These are things that many moms have found helpful.

[gingersmom]

Another suggestion for occupational therapy. Its never too late to start.

:grouphug:

[KS_]

I second this book, and also the suggestion to expand evaluations to consider more than just sensory issues going on. A pediatric neuropsychologist would be a good option for a child of this age. They do a very thorough evaluation, and then refer out if results indicate more specialized assessments in specific areas.

 

 

Another vote for The Explosive Child - it really helped me to see the path that was leading to my ds's meltdowns.

[Pink Fairy]

Thank you all so much. It's good to know that I'm not alone. :grouphug:

Edited April 30, 2012 by Mamabegood

[bettyandbob]

Can medication help if it's a sensory issue?

 

children with sensory issues often have coexisting conditions. Anxiety is a big one. Perhaps living with the strain of the sensory problems leads to anxiety. Whatever the reason there are meds that help. You need an evaluation to deternine if you have a coexisting condition. Watch out if you are found to have ADD, some ADDmeds can exacerbate mild anxiety and cause more problems (ask me how I know).

[welovetoread]

we have an out of sync child too. Occupational Therapy, A close watch on her diet (artificial colors and sugar) the book the explosive child, LOTS and LOTS of sleep (for the child, mine needs 12 hours) and lots and lots of wine for me.......

[welovetoread]

Just wanted to add that we recently purchased a trampoline, its been life changing for my out of sync child!

[Pink Fairy]

Just wanted to add that we recently purchased a trampoline, its been life changing for my out of sync child!

 

We have a trampoline, but it's meant for younger children. Do you mean one of those mini workout trampolines, or the big ones that are for outside?

Edited April 30, 2012 by Mamabegood

[gardenmom5]

have you addressed if there are any dietary sensitivities? often there are. they won't test out as a "true" allergy, but they can and do affect behavior. Naturopaths and similar would be the suggested route for that type of testing. if there is a DAN! near you, that would be even better. even though SPD isn't ASD, the sensitivities are overlapping and often some of the same biochemical treatments work. I would strongly suggest keeping a food journal of what he eats, then look for patterns. some of the biggest culprets are gluten, casein (protein in milk), soy and yeast. some kids are so sensitive, that just removing those things they are sensitive to, will eliminate their issues.

 

When my son was 'diagnosed' (no testing, just my ped. :rolls eyes:), I joined a yahoo support group that was fabulous. I learned FAR more there than I did from my ped, or Carol Kranowitz's book, or the OT my ped sent me to. I strongly recommend joining as it will prove to be incredibly educational. SID-DSI_AllAboutKids@yahoogroups.com

 

they talk about therapies, diets, alternative therapies, strategies, etc. and eveyone's experience with them. what to look for in a good OT, etc. It is wonderfully supportive.

 

because they talk about diet, that entered my radar and one day when my son was having a particularly BAD day, all I could think was "what have you been eating?" :001_huh: I eventually realized nitrates/nitrites trigger aggression in him - just removing them from his diet settled that area down siginficantly. He's on a bunch of supplements recommended by his DAN!, but they have been very helpful.

 

last fall I took him off everything to do evals through the medical school, and within a week my daughter wanted to know when he was going back on them because he was being much more difficult. (she wasn't the only family member asking ;)) understand my daughter is a first year pharm student and constantly hears how the supplement industry is a rip-off.

[gardenmom5]

I will add - my son's DAN! did alot of blood work to see what his nutrient/neurotransmitter/enzyme levels were. the supplements he takes are all aimed at gettting his levels normal. Just telling her what his behavior issues were she could guess where he was deficient (in some areas, quite significantly) so she wasn't surprised by his blood work. we can see a difference in his functioning just getting those levels up.

 

we will be retesting his blood work next week and we'll see how much of a difference they have made and where to go from here.

 

(she also tests stool - but he was so NOT cooperative on that one.)

 

eta: some SPD kids are picky eaters and it's hard to get the proper nutrients in them. To make it worse - some SPD/ASD kids do NOT absorb or process nutrients in the same way as a NT child. so even if they are getting the nutrient, their body isn't utilizing them to the fullest.

Edited April 27, 2012 by gardenmom5

[Parrothead]

Have you tried an elimination diet? It won't necessarily help with the SPD but it may help if there are other things going on along with the SPD. Get rid of the usual culprits first - dairy, wheat, sugar, food dyes, HFCS, etc.

 

Food every couple of hours to keep the blood sugar level. Keep on hand fruits, nuts, seeds, cut veggies, hummus and cheese, if dairy isn't a trigger food.

 

Lots of sleep and plenty of exercise may help. My 12-year old with sensory issues still sleeps 10 hours a night.

 

A schedule and a 5 minute warning for the next thing. As in "Five minutes until we switch to ____." Then a three and one minute warning. If need be do a 30 second warning then have him count down the last 10 seconds.

 

Also as much warning as possible if the schedule is going to change. It takes some people a few days to process a schedule change.

 

A sensory eval is probably a must. Then you'll know what the triggers are.

 

Down time may be necessary. After a stimulating morning, an hour reading or just thinking while lying on the bed may be just the thing. An afternoon of activity may need an hour before dinner sitting on the porch swing.

 

Good luck

[Pink Fairy]

I will add - my son's DAN! did alot of blood work to see what his nutrient/neurotransmitter/enzyme levels were. the supplements he takes are all aimed at gettting his levels normal. Just telling her what his behavior issues were she could guess where he was deficient (in some areas, quite significantly) so she wasn't surprised by his blood work. we can see a difference in his functioning just getting those levels up.

 

we will be retesting his blood work next week and we'll see how much of a difference they have made and where to go from here.

 

(she also tests stool - but he was so NOT cooperative on that one.)

 

eta: some SPD kids are picky eaters and it's hard to get the proper nutrients in them. To make it worse - some SPD/ASD kids do NOT absorb or process nutrients in the same way as a NT child. so even if they are getting the nutrient, their body isn't utilizing them to the fullest.

 

I believe it. He throws up--literally throws up--when he eats foods that he doesn't like. So I always give him the choice of milk and Cheerios if we are eating one of the things on his extensive list of foods he won't eat (like "meat," lol, unless it's hot dogs or something processed). I'll have to think about it. Is there a list somewhere of good and bad foods? He is so limited already, I'm not sure how it would work.

[gardenmom5]

I believe it. He throws up--literally throws up--when he eats foods that he doesn't like. So I always give him the choice of milk and Cheerios if we are eating one of the things on his extensive list of foods he won't eat (like "meat," lol, unless it's hot dogs or something processed). I'll have to think about it. Is there a list somewhere of good and bad foods? He is so limited already, I'm not sure how it would work.

 

 

sometimes, if a child will only eat one food - it is a sign that they are in actually sensitive to that food and it will produce an opiate response. e.g. kids with yeast intolerance/overgrowth seek after sugar

 

I had read that gluten sensitivity can mimic bipolar, and then my DAN! told me it will also mimic schizophrenia. things clicked for a now deceased extended family member who lived for bread. she was also a diagnosed schizophrenic, but on only 1/2 of the lowest dose medication available.

 

eta: the fact you mentioned he is so limited with his diet is telling that there are food sensitivities. do try a naturopath who is familiar with spd or autism spectrum (much overlaps) if you can't find a DAN! One thing the moms from the SID list said was as they are able to elimiate the sensitivity triggers, diet expands. My son is now looking at carrots, and he's even been willing to try a bite of a new food. huge step for him.

 

eta: one of my son's favorite foods is bacon. there are nitrate free bacon/hot-dogs etc. usually only a health food type grocery, but they are out there.

Edited April 27, 2012 by gardenmom5

[Parrothead]

I believe it. He throws up--literally throws up--when he eats foods that he doesn't like. So I always give him the choice of milk and Cheerios if we are eating one of the things on his extensive list of foods he won't eat (like "meat," lol, unless it's hot dogs or something processed). I'll have to think about it. Is there a list somewhere of good and bad foods? He is so limited already, I'm not sure how it would work.

Oh, dd would do that with foods that didn't feel right in her mouth. It isn't so much that she didn't like the foods, they just felt awful in her mouth. Luckily she ate such a variety of foods that missing the worst offenders didn't effect her overall diet much.

 

There was another thread about kids with sensory issues. I remember someone mentioned some kids need OT to be able to eat since their SPD kept them from putting almost anything into their mouths. I only remember that part because it was a thank goodness moment for me.

 

I only mention all of the above because it could get to the point that he becomes one of those kids who can't tolerate anything in his mouth if he is already seriously limited in his food choices.

[Barbara H]

You've gotten a lot of good advice.

 

I just want to say... It isn't too late. Don't waste time beating yourself up about the past and work on what is happening right now. While it certainly can be the case that the primary problem is that he has problems with sensory regulation, I'd be hesitant to start from that assumption without more investigation or evaluations. Factors that have been raised, such as food intolerances, can be a root cause and if you can get to the root cause ultimately you are going to be more successful.

 

Also, I want to echo the suggestion of the Explosive Child. There are a number of good resources on the website. http://www.livesinthebalance.org/

Edited April 28, 2012 by Barbara H
fixing link

[walkermamaof4]

If you have a Brain Balance near you, they might do testing for just $99 and then the nutrition sensitivities test is $495. This will tell you just about anything and everything he reacts to, but the main test will tell you so much about who he is and how his brain functions that it is worth every penny. They typically charge $295 for it, but ours is doing it for just $99 so maybe they all are. The test was fabulous. The book, Disconnected Kids, is helpful but the most helpful is the back of the book with tons of exercises and such that you can do. I really recommend getting a nutritional sensitivities test as the others have suggested.

[Alenee]

I just want to :grouphug: you and say that there is hope and help. Dd was diagnosed with SPD at 4yo. At 8.5 yo we put her on an antidepressant which helped immensely! Then we found a naturopath who did real medical (urine and blood) testing and she found a ton of issues that my Ped called "normal". Dd has been on supplements for almost a year now and we pulled her off of her antidepressant recently. She's a very different child now...one who smiles and even tries new foods! :)

 

eta: She's always been picky about food but her tests didn't show any sensitivities. We do keep her away from red dye and caramel color though because we've watched the effects. We believe most of her food issues come from her sensory experience of them.

Edited April 28, 2012 by Alenee

[TXMomof4]

Thank you all so much. It's good to know that I'm not alone. :grouphug:

 

We started OT a couple of months ago for visual processing disorder, but she is mostly working with him on sensory issues because of how crazy things have gotten.

 

I just picked up The Explosive Child from the library.

 

The OT has us using The Alert System, but so far I haven't had a chance to implement it because he goes from normal to freak out mode in about 10 seconds. By the time I realize what's going on, it's too late. Once he starts, it's like he has to cycle through the entire process, nothing is going to stop it.

 

Can medication help if it's a sensory issue? I swear, when I read The Out of Sync Child, it was like bells were ringing. All I could think was, "Yes! This is exactly what I see on a daily basis!" But most of the advice seemed geared to younger children (I need to read it again and see what ideas will be useful for us).[/QUOTE]

 

My dd is 8 and I was fully prepared for an SPD diagnosis when we took her in for an eval in January. I was wrong - she was dx with generalized anxiety disorder with OCD tendencies. Turns out the signs of SPD (only wearing certain clothes, never wearing socks, blankets having to be EXACTLY right or giant, huge meltdowns) were really control issues. When the psych told me that I was still doubtful and got a referral of an OT eval. 'just in case'. We started Zoloft and behavioral cognitive therapy. I have seen a huge, giant, monstrous, amazing change and it was almost immediate. She still has days that are hard, but we don't have meltdowns daily. She can stop and reason through why her reaction isn't appropriate for a situation which is so big I can't even put it into words. I had to tell the psych that she was entirely right. The meds calm her down enough so she can put the BCT skills she's learned to use.

 

She is still my quirky, goofy funny child. I was seriously worried about her changing or not being herself while she was on meds. I was completely wrong. Now she is able to completely be herself without the distraction of the stress reactions.

 

All that to say - get an evaluation done if you can. All the self-diagnosing in the world didn't help my dd. I was trying to treat the problem in entirely the wrong way and used several years trying to help with a problem that wasn't really the problem, kwim?

[Ottakee]

I agree with checking other things out.

 

We had meltdowns of all meltdowns here and my daughter ended up having early onset bipolar. Medication has made a HUGE HUGE HUGE difference.

 

We also do supplements and we tried the dietary stuff with no impact. It is worth trying though.

[Pink Fairy]

I will start with our pediatrician, but he is awesome when it comes to referring out for things that are beyond his expertise. What sort of doctor is appropriate? I don't know if we have any pediatric neuropsychiatrists here, or if my insurance would cover it anyway, but would a regular child psychiatrist/psychologist be a good second choice?

[Hope in God]

Dairy was what made my son crazy. When we took him off dairy his endurace improved dramatically, his asthma went away and his meltdowns ended. When he used to freak out there was no stopping him. He would just cry "mommy, mommy, mommy" over and over again but I would not be able to comfort him in any way until the meltdown just burned itself out. He is still a sensitive child and high strung in certain circumstances but it is waaaaayyy easier to deal with. I can actually talk to him and he hears me and answers me and we can work things out fairly quickly.

 

It is always hard when you are just working things out. Don't beat yourself up but do try the non-drug route first.

[LibraryLover]

I agree, it's *never* to late for sensory work. I've found massage to be very helpful for older kids. Either by a professional-- maybe just the feet or upper back, or arms and hands etc. He might let you do his feet. (After a shower lol). I can't say enough about this. You do have to be careful and see what works. Some people are not into touching, or maybe not at first. Regualr upper body massage where you can leave your clothing can be very helpful without the overload.

 

Auditory overload can be an issue as well. Turn things off, or down. Vacuum, stove vent, TV, radio, turn down the lights at night. Play very soft music in the background if it helps (and sometimes it does not).

 

I agree with activity...and I tend towards real work, as well as a game of friendly hoops in the driveway. Pay him (modestly) to mow, walk the dog, rake for others. (At his age, I wouldn't want him mowing for other people). If you've considered raised garden beds, have a truck load of manure delivered and have him shovel. Don't make it seem like punishment. Pay him, tire him out. Work with him. These kids are very sensitive to be told they are being bad, are being punished etc. They are already internally beating themselves up.

 

Take long walks with him. See if there is a horse barn where he could trade work for lessons (this is tricky-- everyone wants to to this.). Riding is also good for kids with sensory issues. If there is a theraputic riding program near you, it's sometimes possible to get insurance to pay.

 

 

Also, fish oils, steady protein, fewer empty carbs, or at least have them with a good protein (I know kids sometimes want chips etc) and if needed, anti-anxiety meds later. At 10, he's still growing, so I would try to exhaust aother areas first, but sometimes meds are what is needed.

Edited April 28, 2012 by LibraryLover

[Joyofsixreboot]

:grouphug::grouphug: My now 13 yo is/was my child like this. I remember from about 9-12 being hellish years. Some settling of the hormones and maturity have helped. I never took her for an evaluation but she has tons of sensory things that bug her so that is an avenue for you to explore. For my dd not letting her get too tired or hungry have been huge. I know what you mean about it not being obedience. To others looking on it may seem that way but it's not. And it leaves moms feeling exhausted and worried and guilty and angry. :grouphug::grouphug:

[TXMomof4]

A child psychiatrist should be fine. If you need a neuropsych they would be able to tell you that. I think getting an unbiased, completely objective person to assess is the most helpful step. I was completely overwhelmed with dd but our dr. was able to see that on the scale she wasn't too far over the top as far as the OCD traits go.

Prayers for you and yours.

[Twinmom]

I believe your ds could still benefit from OT for sensory issues if that's an option for you. We did OT at 8.5yo. For us, The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross Greene was invaluable for handling the meltdowns.

 

I understand exactly what you mean that it's not an obedience issue. :grouphug:

 

I have a child like this, and I second (or third!) this recommendation! I started in OT with DD when she was ten and it was still very helpful. It is never too late...brains are developing new pathways throughout life, so long as we challenge them to do so! You can still make a difference. We continue DD's treatment now through medication and neurofeedback, as well as through the use of Heather Forbes' wonderful materials (they work just as well with kids whose brains traumatized themselves rather than their environment!). She is exhausting, but positive changes just keep coming. She improves all the time, baby-steps!

 

Hang in there...you are dealing with a disabled child, not a discipline issue. I know the room thing was a trigger for my DD as well, and remains one to this day. She needs to be close to me to help her regulate her emotion...separating her from us when she is melting down does not calm her down but rather terrifies her. She needs to be in contact with me to help regulate her disregulated system. The rest of the kids do well with a time-out, but for DD, it feels like an abandonment. Just the way it goes with her little system. Sometimes it feels like we have two separate families, we have to discipline her so differently than the rest! Again, both a late start with OT, "The Explosive Child" and Heather Forbes' Beyond Consequences series (three books) have been a critical part of learning to manage her at home. Without this help, I have no doubt that we would have had to put her in an out of home placement for her own and our safety by this point!

 

:grouphug:

Edited April 29, 2012 by Twinmom
Spelling...

[Twinmom]

Can medication help if it's a sensory issue? I swear, when I read The Out of Sync Child, it was like bells were ringing. All I could think was, "Yes! This is exactly what I see on a daily basis!" But most of the advice seemed geared to younger children (I need to read it again and see what ideas will be useful for us).

 

In a word, yes. Last resort for us, but it has worked beautifully for her. I have two other sensory kids who didn't need it, but DD was so severe that she has benefited from high, anxiety level doses of Prozac and the occasional, emergency dose of Ativan. Puberty only made this worse, so we are so happy to be able to make her more comfortable with medication, all the while continuing her physical rehabilitation in the hopes of taking her off it in adulthood.