DH is against treating ds's SPD

[Pookietooth]

Every time I bring up getting ds (now seven) treatment for his SPD issues, dh gets upset and says that nature created it for a reason and that Einstein had Asperger's and look what he did. He says that if someone had treated Einstein as a child maybe we wouldn't have the theory of relativity. Sigh. He also gets upset when I complain about his and ds's picky eating -- he says he never wants to hear that term again and that it probably evolved as a protective mechanism. Urgh. I'm starting to wonder if DH has Asperger's. He says that I shouldn't focus on what ds can't do, or eat, but instead on what he can. So what if he won't ride a bike, write, play on a crowded playground, tolerate loud noises, eat sticky, crumbly food (or lots of other foods), etc. He says that I'm being too negative and that it's my depression making me see focus on the negative too much.
I just want ds to be able to enjoy things more, be less anxious, and eat a wider variety of foods. I would like to be able to cook a meal of food that we all can enjoy. I would like to have a meal with my family. But somehow he twisted it around by saying that I'm trying to make ds "fit in" and that I focus on food too much.
Has anyone else had this experience? I'm feeling very isolated and frustrated.
Oh, and I have been here before but not for awhile.

[HarperRose]

Well, my first instinct here is to tell him to STFU and do what you know your son needs ANYWAY.

Also: Tell him to quit ignoring that your son has issues that he needs help with.

[snomnky]

DH said the same thing about my DS, diagnosed at 4, now 4.5 and a TON worse. If we had started then we may not be in the situation we are in now. Recently his ped (a developmental ped) said we NEED OT, then a child psychologist we started seeing (yes, he agreed to the psychologist before OT) Asked why we hadn't started OT and said we NEED DS in OT.

DS has now started OT.

Your DH sounds a lot like mine, who thinks DS pooping in his pants 4 times a day at 4.5 is 'normal'.

Honestly, screw him and do what needs to be done. My OT has said age 8 is the cutoff for getting OT paid for without a fight.

[Starflower]

Jen - Sorry you're dealing with this. (I was surprised to find this was your thread - I was looking for something else about SPD on here.)

I think if your DS is happy with everything, then yeah, your DH would have a point about that's how everything is "meant to be." But if DS is anxious and frustrated and sensory issues cause problems for him in his life, then your DH is way off base.

I think you may be onto something about DH too. Maybe he if consents to DS having therapy he is afraid that he will have to look in the mirror at himself and that's scaring him. And his argument about Einstein is ridiculous. Suffering does not create greatness in and of itself. Plenty of brilliant and amazing people suffer and then do nothing in life because of their issues. I'm not saying this would happen to your DS, just that your DH's argument doesn't hold water IMO.

I think the question should not be about what DH theorizes, but rather, is your DS mostly happy with his life? Does he experience joy? Are there things he'd like to do but is afraid to do or avoids because of his issues? If so, is DS's pattern to be more persevering to tackle things he wants, or is it leading to a pattern of more and more avoidance?

If it's the latter, then how could OT possibly do anything but help him?

[~cassie~]

I would totally tell him to STFU and do what you need to do. If your son is having problems/frusturations, then he could use that extra help. He will someday(if not already) realize that some kids can do things that he cannot do, and it may be a lot easier to help him to work on those goals now vs waiting even longer.


I've never dealt with this with my dh, he lets me do whatever I want with regards to the kids, he just doesn't help much with therapy. But I have been told by some pro deaf people that I never should have implanted Aidan. He was born deaf, and should have stayed that way We get our kids glasses when they have trouble seeing, just b/c the diagnosis is different doesn't mean you can't help him. We like to see it as "God made mankind that could invent certain procedures to help our children"

[Linda on the move]

I think that things like this are why the divorce rate is so high for couples with sn kids.

DH and I have spent time in marriage counseling and part of that time was talking about DD and her issues.

If we can't talk to our partners about what is going on with our kids and feel heard, the relationship is in serious sh*t.

So my advice is to make appointments with both a marriage counselor and whoever your son needs to see. You gotta do what's right for your child, and your DH can make peace with it.

[honey-lilac]

FWIW I'm not in your situation BUT I voluntarily stopped treatment for my SPD son. He was a pretty severe case but I was not agreeing at ALL with how the "experts" were handling his treatment plan - they were agreeable to working with me according to how I wanted things done, but I found that their methods were so completely contra-my instincts that it wasn't worth putting up the fight. I felt I could meet his needs better myself. I stand by that decision.

[LynnS6]

I've just got a couple of minutes, so I can't post my usual long winded post .

Here's a thread I wrote about a year after ds started therapy about the benefits to therapy for him:
http://www.mothering.com/discussions...d.php?t=709717

Here's a post I made about why we did get the SPD diagnosed:
http://www.mothering.com/discussions...2&postcount=21

Together with the whole thread, which had some interesting and differing opinoins about diagnosing SPD.
http://www.mothering.com/discussions...d.php?t=729810

Finally, I'd say that we got ds diagnosed not to change him, but to help him be more comfortable in his skin. I wanted him to be able to choose whether to do things or not. With his SPD, his fear and sensitivities were keeping him from doing things he wanted to try. After treatment, he's still a cautious, somewhat quirky kid. But his decisions on what to do are based on what he likes, not what he's afraid of.

[karika]

I too would have a problem with any form of pharmaceutical treatment or 'health care professional' but I am not in the situation. Maybe the first thing you can do is just change your child's diet. We recently went GFCF and heading to SF. My daughter has not been dx with anything, but has tics and crying fits, I read a page about gfcf diets and joined a yahoo group and it has been wonderful. Her crying fits have disappeared except twice when we had an infraction. I also do not believe that nature made these neurological issues. In my opinion, neurological damage is done by toxins. Toxins in the vaccines and in the environment (water and food), as well as the toxins already in our bodies when we gestate the babies (my dentist told me it was perfectly safe to have all my amalgams removed, which I now know made dd1 a collector for the mercury, but I didn't know it at the time) I know this post is a lil off topic from what you asked... but what you could do is just change LO diet, you will most likely see remarkable behavioral changes, and then you could tell your dh that if food alone improves his quality of life, wouldn't it be good to go that route... some people heal their children through this change of diet alone

http://www.gfcfdiet.com/NewpageDirectory6.htm
http://gfcfdiet.com/
http://health.groups.yahoo.com/group/GFCFKids/
http://www.talkaboutcuringautism.org/index.htm (click gfcf diets at top also)

[flitters]

One thing that helped in my conversations with dh about seeking OT for ds was to basically call out that he didn't know enough about OT to have reasonable grounds against it. I don't know if that applies to your situation at all (and my dh's reservations were somewhat different than yours'), but getting to the point where he acknowledged that, then providing information about the details of therapy helped considerably.

We also had very involved interviews with a few therapists, then long conversations with the therapist we chose in advance of beginning OT that shaped the process in a way that is better for ds. We also go to all the sessions, so perhaps your dh could go and see if things were actually happening that feel troublesome to him. At least for ds, it's been all fun and extremely benign to observe.

That said, we are still quite new at this (started OT mid-January) and only time will tell if or how much it helps. This forum was also pivotal in getting me the right sort of perspective and info to present to dh.

[KimPM]

Would he listen to what your ped or family doctor says about getting therapy?

[Linda on the move]

Originally Posted by karika

Maybe the first thing you can do is just change your child's diet. We recently went GFCF and heading to SF.

I don't see what this post has to do with the topic. Her husband doesn't think anything is wrong, so why would they change diets?

Living with someone who is in complete denial about a child's sn needs is a totally different topic than natural vs modern treatments. Totally different. And the treatment for SPD is therapy -- doing things -- not meds.

And trying to talk to a spouse who has some of the same traits is .... I can't even think of a word for it.

My child has PDD-NOS and it is a HUGE issue between my Dh and I. I suspect that my DH has Aspergers' -- he totally fits the profile. Trying to talk to about our DD is VERY personal for him because he feels like I'm saying bad things about him, which I'm not. I see our child suffering (truly suffering) so I want to help her.

I think DH also feels a little guilt -- like it is his fault that our child is falling apart at the seams, so it's easier for him to pretend that she is OK, that she'll out grow it, etc.

[Pookietooth]

Originally Posted by Linda on the move

I don't see what this post has to do with the topic. Her husband doesn't think anything is wrong, so why would they change diets?

Living with someone who is in complete denial about a child's sn needs is a totally different topic than natural vs modern treatments. Totally different. And the treatment for SPD is therapy -- doing things -- not meds.

And trying to talk to a spouse who has some of the same traits is .... I can't even think of a word for it.

My child has PDD-NOS and it is a HUGE issue between my Dh and I. I suspect that my DH has Aspergers' -- he totally fits the profile. Trying to talk to about our DD is VERY personal for him because he feels like I'm saying bad things about him, which I'm not. I see our child suffering (truly suffering) so I want to help her.

I think DH also feels a little guilt -- like it is his fault that our child is falling apart at the seams, so it's easier for him to pretend that she is OK, that she'll out grow it, etc.

We actually already have tried diet, although we did SCD for a year not GFCF (because I didn't think we could handle the df part although we did only goat milk for awhile). We did OT through the schools when ds was 3, but they were too coercive and felt that his needs weren't all that great anyway. We did homeopathy with a couple of different people as well as flower essences. Some things improved and some did not. At the time it wasn't an issue for dh -- he generally lets me decide most of the medical treatment stuff. It's only been recently and I'm thinking it has something to do with having another baby who appears to have few of the same issues that ds had (the only similarity is how difficult it is to get her to sleep, but since she's only 4 months others could emerge later). It has been a big transition for all of us and the increased stress has been hard all of us. He's had health issues pretty much the whole time since she's been born, which makes me think that the stress is greater than he realizes and it's coming out in odd ways.
I think he is worried that it would mean he needs to change too, since he has some similar traits (although some of my traits overlap as well) that before had just seemed like personality quirks. And he is taking it personally. I think, too, though that he is scared that it will somehow harm ds, that it will somehow take away from his giftedness or something. I think he has built up this wall of saying to himself that since society thinks folks who are different are worse off or limited, he will turn it on its head and say that it's society with the problem. Problem is, society is the majority and we all still have to function in it.
I do also feel a bit reluctant because of many of the methods used we had experienced seemed manipulative or coercive and the teachers condescending. But that is probably an individual thing, right?

[Linda on the move]

Originally Posted by Pookietooth

We I do also feel a bit reluctant because of many of the methods used we had experienced seemed manipulative or coercive and the teachers condescending. But that is probably an individual thing, right?

The point of therapy is to get a child to do things that they aren't going to do on their own, so it is manipulative and/coercive. We each have to decide what is best for our child -- to be left in their comfort zone or pushed out of it.

There are some non-therapy options that have worked well for my DD's sensory issues: swim lessons/swim team and gymnastic lessons.

But there are lots of ways that my DD has to be pushed out of her comfort zone that I just can't make fun. Non-coersive parenting/unschooling/etc. would, in her case, be child neglect. For some kids those philosophies work just fine, but they are luxuries my child doesn't get this lifetime.

My child is never going to be like the other kids. She isn't normal. Nothing I do is going to make her normal. I'm trying my hardest to give her a quality of life that will work FOR HER. A life where she is happy. This isn't about society. This is about making her life work for her.

Letting her do only what's she wants doesn't make her happy now and it doesn't make her happy in the long run.

[lolar2]

Your DH's viewpoint, as far as the Social Model of Disability, is pretty wide-spread in the disability rights community, especially in the UK. http://en.wikipedia.org/wiki/Social_model_of_disability

However, you're right that society is NOT perfectly adaptable, so people with special needs are going to have to learn some extra skills to deal with society. Plus there is no way to apply the social model perfectly-- curb cuts for wheelchairs can make it a little harder for blind people to find the curb, stuff like that. A world perfectly adapted to a sensory seeker would look very different from a world perfectly adapted to a sensory avoider. There just isn't a perfect way to change society (though many improvements are possible).

[betsyj]

While I really do like the idea of the Social Model of Disability, I also know it isn't a reality, and would be impossible to do fairly for everyone as lolar pointed out.

I would want my son to have the skills to navigate in the world as it is right now. Also, in the OP's case it seems like it is more about her husband's needs then her son's and that isn't right.

If her son decides that he doesn't want to do all the therapies or drugs, then that is certainly a fair discussion to have. But, I don't think Dad's issues should dictate therapy for the son.

[lolar2]

By the way my "cred" for ever posting in this forum is that in my real life, I am a fairly radical disability rights activist and sort-of scholar. I don't have a child with SN (though I've had a chronic illness since I was a child, myself). Just in the interest of full disclosure.... Politically speaking, I am a big proponent of the Social Model, but in real-life individual cases, we have to make some compromises.

[vocalise]

IME, all the OT did was put together a sensory diet for me to implement at home. I realized that I could have done that myself after reading "The Out-of-Sync Child" and "The Out of Sync Child Has Fun". So, maybe you don't need your dh's blessing or an outside OT to implement a sensory diet? That doesn't help with your feelings of loneliness, of course. And for that, I send you s.

FWIW, natural selection is also as "nature intended." That doesn't make it a good thing for your ds to experience!

[briansmama]

I'm sorry you're going through this. I can relate- my DH often points out that ds is a unique child and may never be a "perfect child." It gets very frustrating to defend myself by explaining that I certainly don't expect either of our children to be perfect, but I cannot ignore the feeling in the pit of my stomach telling me that ds doesn't feel good.

Ds is just not a peaceful child right now. Gluten/Casein throw him off for days and the resulting behavior/emotional explosions are very challenging. My DH does support removal of gluten/casein, but it took a while to get here. He also supports any medical treatment I feel is necessary, so we are working with a naturopath who specializes in gluten/casein sensitivity and sensory issues.

Maybe give your DH time to understand, while you focus on your dc and take him to treatment in the interim yourself.

I very much think that men deal with these challenges by denying they exist because they cannot fix it themselves. I also agree with the pp who said that marriages often do not survive children with special needs/challenges for these reasons.

That said, I do think that many of the challenges parents face now with their children are not black and white and can often be dealt with for years before a parent finally becomes exhausted and seeks help. I've often thought that it would be easier if my ds had very obvious physical symptoms to gluten/casein because then no one would think to offer him any.

HTH! Good luck. I know how lonely this can feel.

[Pookietooth]

Originally Posted by vocalise

IME, all the OT did was put together a sensory diet for me to implement at home. I realized that I could have done that myself after reading "The Out-of-Sync Child" and "The Out of Sync Child Has Fun". So, maybe you don't need your dh's blessing or an outside OT to implement a sensory diet? That doesn't help with your feelings of loneliness, of course. And for that, I send you s.

FWIW, natural selection is also as "nature intended." That doesn't make it a good thing for your ds to experience!

I think dh is saying that natural selection actually favored SPD somehow.
I actually already read those books but felt overwhelmed by all the things they have you do. I was hoping a professional could pick a few that would apply to ds. He is sensory seeking in some areas and sensory avoiding in others.