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JustMom Offline
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Posts: 7
Joined: Jul 2012
#1
Newbie

Hi,

I am currently wading into the waters of SPD research and support after having my 5.5 year old son diagnosed. I was a little blindsided intially. He is about to start kindergarten, and I am home schooling. But, I had some concerns, and he was evlauated free through the county school system's special services department under the IDEA laws. My initial concerns were that he might have ADD and/or a learning disability. He has a persistent gap in learning some single letter and numbers, which has made it impossible to proceed with basic phonics. I was trying to learn if it was a learning issue or an attention issue.

Well, that initial set of assessments has spawned so many more. At this point, it is fairly certain that he has an auditory processing disorder- I say fairly certain because most places won't officially diagnose until 7 for that, but the SLP, audiologist, and CAPD specialist who evaluated him all feel that way. The SLP and audiology consults came out of the intial assessments when they realized that he could not hear the difference between some of the basic phonemes even when those differences were highlighted to him. He also answered almost every question wrong before correcting himself, which highlighted a clear problem with filing and accessing information. The SLP was the one who suggested an OT eval and brought up SPD. Our ped is clueless, but she is nice enough to refer for any eval I ask for. Next week, we will be seeing a pediatric neurologist who specializes in area like these, and he should become the point person. "The Out of Sync Child" was recommended to me, and suddenly it all fits. I was very aware of sensory aversive behaviors, but I did not have an understanding of sensory seeking behaviors. Many of them fit my son exactly. So, I have no problem whatsoever with the diagnoses. THe auditory processing goes right in line with the learning gaps I was seeing, and the SPD goes with behavior I have witnessed.

Okay, all that background established.... does anyone have any advice on how to get my husband on board? He is of the mindset that DS is just being 5 or just lazy or just disobedient.... He is not nasty, mind you, but he is not supportive either. He allowed me to get the initial eval thinking, most likely, that it would prove I was wrong and we would move on with life. As more have come from it, he is still dismissive. He has not told me not to pursue the evals and OT, but, he is not supportive, personally. Basically, I go about the business of juggling appts and, now, OT, and trying to figure out how I will alter his education for now, and DH is not involved at all. I have other young children in the home as well, and, the emotional toll is tough. I just wish I could sound this out with another adult. Now, I hope that this forum will provide some of that much needed support. But, I am wondering if any who have gone through a similar situation can offer advice on how to make a spouse acknowledge that there is something real present.

Thanks.
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Marci Offline
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#2
RE: Newbie

(07-12-2012, 02:25 PM)JustMom Wrote: Next week, we will be seeing a pediatric neurologist who specializes in area like these, and he should become the point person. <snip>

Okay, all that background established.... does anyone have any advice on how to get my husband on board? He is of the mindset that DS is just being 5 or just lazy or just disobedient.... He is not nasty, mind you, but he is not supportive either. Thanks.
Make your husband go to the neurologist with you. Tell him if he doesn't believe in SPD, then to come hear what the doctor says.
(This post was last modified: 07-13-2012, 01:24 AM by Marci.)
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LAC1961 Offline
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#3
RE: Newbie

I don't know what kind of marriage you have Marci, but in my world you can't "make" your husband go anywhere he doesn't choose to go.

JustMom,
I completely empathize with how you're feeling. My daughter was just evaluated and diagnosed two weeks ago. It is indeed overwhelming. It seems I'm spending about 2-3 hours every night on the web educating myself about SPD. My husband is on board, but some other family members are not. What "worked" with them was that I printed the symptoms checklist and asked them to complete it so I could take it to the evaluation so the OT wouldn't just be relying on my opinion. They filled it out (because everyone likes to put in their two cents worth) and were pretty blown away by how many of the symptoms she had. After the eval, I gave them a print out of simple things to do at home to help a child with SPD. My adult son came over a few days later and tried to incorporate some of the suggestions and came to me later in the day to say, "wow, I didn't realize how hard it is to get her to look at me when I'm telling her something." Other family members now understand why she has alway spoke in such a booming voice or why she's so rough with other children or why she'll walk around with soaked pants and not seem to notice. The key was that their awareness changed once they had seen the symptoms checklist and small ways to interact with her that may differ from the way one might deal with other children. My day care person had been having a difficult time getting her to sit for a few minutes each day to do one workbook page in a kindergarten prep workbook. After she read the things to do at school recommendations, before doing workbook time she asked her to help her do some picking up and gave her some heavy things to move, then let her play on a yoga ball for five minutes. Then she had her sit to do the workbook page (while chewing gum) and she was able to complete it with no problems. Sometimes people just need to see the treatment working to believe the diagnosis is real. I hope that's what happens with your husband. One of the first things the OT asked my husband and me before the evaluation was whether or not our daughter played us against each other. She said treatment is really hard if both parents aren't on the same page. Perhaps you could also explain to him that the younger your son gets treatment the better the outcome will be, so it would be best for your son for him to get on board now to avoid bigger problems later--that might appeal to the "grab the bull by the horns" mentallity that is so prevelant with men.
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Dani Offline
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#4
RE: Newbie

Hi JustMom, and welcome to the site. I hope you are able to get all the support you need here. Smile

I have moved this thread to the Introductions forum, as that's mostly what it is.

(07-13-2012, 12:51 AM)LAC1961 Wrote: I don't know what kind of marriage you have Marci, but in my world you can't "make" your husband go anywhere he doesn't choose to go.
Just a quick note here: please remember to word things in a way that is constructive to the situation. Saying things like "I don't know what kind of ____ you have, but" can come off as mildly insulting and can lead to drama, which is against forum rules. I do not believe that was your intent here, but please keep it in mind for future reference. Thank you.

JustMom, I hope you are able to find a way to convince your husband to come on board. It is disappointing how many fathers aren't willing to help out or even necessarily believe in this. :/

Welcome again though. Smile
Hi, welcome to SPD Support! Have a free cyber hug! hug
(This post was last modified: 07-13-2012, 12:34 PM by Dani.)
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JustMom Offline
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#5
RE: Newbie

Thanks, Dan. I hadn't even noticed the introductions page. I appreciate you re-routing it to the appropriate place.

Laci- I think, if he'll read "The Out of Sync Child" he will see a lot our son in certain places. Can't hurt that I underlined things in pencil as I read. Wink My other thought is to ask the pediatric nuerologist to right a report for my husband, so he can have a concise overview from all of the various people we've consulted summed up by the one.

Marci- in an ideal world, that would be helpful. But, my husband's job is not one where he can just take off. And, the dr is 2 hours away, so it would take an entire day off. That is not the world we live in. Also, I need to find a way to get him to the information himself or else he will just get defensive and push back. I know that it is not atypical for one parent to not want to see it. I just have to figure out how to help him past that.

Thank you for the feedback. Please, keep any suggestions coming!
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Tuttleturtle Offline
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Joined: Jan 2012
#6
RE: Newbie

Getting a neurologist reporting is a good thing anyways, not just for your husband to read. These reports are a good way to keep track of what our impairments are, are a good way to keep track of what help we need and suggestions for that, and are a good way to keep track of improvements as we improve over time. Getting a report and having him read it sounds like a really good idea.

If he reads some of the books that's even better.
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LAC1961 Offline
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Joined: Jul 2012
#7
RE: Newbie

(07-14-2012, 08:43 PM)JustMom Wrote: Thanks, Dan. I hadn't even noticed the introductions page. I appreciate you re-routing it to the appropriate place.

Laci- I think, if he'll read "The Out of Sync Child" he will see a lot our son in certain places. Can't hurt that I underlined things in pencil as I read. Wink My other thought is to ask the pediatric nuerologist to right a report for my husband, so he can have a concise overview from all of the various people we've consulted summed up by the one.

Marci- in an ideal world, that would be helpful. But, my husband's job is not one where he can just take off. And, the dr is 2 hours away, so it would take an entire day off. That is not the world we live in. Also, I need to find a way to get him to the information himself or else he will just get defensive and push back. I know that it is not atypical for one parent to not want to see it. I just have to figure out how to help him past that.

Thank you for the feedback. Please, keep any suggestions coming!

That's a great idea--getting the written report from the neurologist. Let us know how things work out.
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JustMom Offline
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Posts: 7
Joined: Jul 2012
#8
RE: Newbie

OT yesterday was hard for me. This was his third visit. Now, I should be glad that the OT was able to see a more typical picture of him, but, it was still tough for me. He was ramped up all weekend, and he was that way for her too. He kept popping forward into her face and making noises. The wouldn't stay on task for the fine motor work. THen, she saw one of this other things- he was having trouble with a fine motor task and disengaged and started crying. That was one of the initial things that had me seek help because he does this with things like learning letters too. It's not a tantrum, it's a silent broken cry. It breaks my heart that he can go from totally excitable to just wrecked in a matter of moments like that. We walked him through that last repetition of that task, and then she let him do some work with the exercise ball and some wheelbarrow.

I know that I am pregnant and hormonal, and it doesn't help. But, I just wanted to cry as we drove him. It was a tough hour trying to keep him on task and engaged. It was tough to have that happening when he was to be working for someone else besides me. It is tough to see him so unable to self regulate to deal with these swings. I know OT is good for him. I just wish there was some magic wand to help him learn some self-regulating strategies immediately. Sad
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Odemus Offline
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Joined: Jul 2012
#9
Rainbow  RE: Newbie

Your not alone thats for sure. I to have a hubby who as been in denial for over 4 years.
we have 2 children with SPD, and our oldest i KNEW something was off at 6-8mth mark, but everyone even drs at that point were very unsupportive. he even acused me on making up problems or exageration our 1st behavior and qwerks.

our youngest is 2.5 and its STILL a struggle to communacate with him.. 80% i keep to my self just becuse i know hes of a mine set to ignore or counter what i say, even when he reads the full reports, he will say im over staing the harshness of behaviors to Drs putting our kids in a bad light. So mostly i give him only 1 page of the report.
the page that spells out just where they are in development such as
"lilly is 30mths old in communacation she is ranked at 11mths" ect ect..

the clearness of the ranking ratios is more digestable for him.
so my advice is expect to go at this alone and give him info but dont cram it at him, or accuse him of not caring.

they DO care in their own way. i feel like for some its VERY hard to have a kid(s) with issues... I know its hard for me.. i see people where i live and i have seen them drink and do drugs all thro thier PG, and the kids act and learn just fine (of course who knows how smart they could have been without the drugs) while me who never did drugs or smoked ate well have TWO kids who at times make me want to just weep for what is not. yet i KNOW every step they make is just that MUCH sweeter becuse of the extra effort it took.

You child need help, and no matter who stands in your way you need to be sure to get that help. the more help earlyer in life the better the outcome.
im so happy i found this site, i have been looking for a place just like this for over 4 years.
it gives us a place to share/vent/learn with others on this same journey
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LAC1961 Offline
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Posts: 299
Joined: Jul 2012
#10
RE: Newbie

I'm with you, and I feel for you. My daughter had her first OT session yesterday, and she waivered between being totally amped to just standing there saying, I'm so tired. Then after we left, she threw up at the grocery store. It is indeed heartbreaking, but I have to trust that the OT is doing the right thing for her. Keep pressing on. We're here for you and in this together.
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