Anyone with Ideas for bathing special needs teenager?

[Bestbirths]

Our son is 14, and he has been disabled with MCS (Multiple Chemical Sensitivities) since he was 2. For about a couple of years he has been bedridden (but he doesn't have a wheelchair). Sometimes he just stays in bed, and sometimes we help him to the car or he crawls, then other times he can walk using adrenaline. He gets too sick to bathe himself, and brush his teeth. This often happens when we need to take him to the Doctor's. He doesn't have the energy to bathe, brush, and go. Usually I will just dress him and he will go without bathing or brushing. Since February we have had to help bathe him. He hates this so much, every week or so he will take a shower by himself, maybe once a week or every two weeks he will brush his teeth (but never shower and teeth on the same day, that would be too exausting). He is not receptive to having his teeth brushed or to be bathed anymore. Does anyone else out there have any ideas? What do other parents with special needs kids do? Hope I didn't gross you out, ds has the grunge look going on!

[khrisday]

hmmmm.....
Is there some special equiptment that can help him out? I know I have seen bath chairs, of course the bars, etc. Are you wanting him to bathe every single day? I'm sure that would be ideal, but if bathing is really that much of an issue for him maybe you can agree on less frequency. Sorry I am not more help here.

[Bestbirths]

This is a great idea!

I am going to check into that special equipment, that is a really wonderful idea! Thank You! Maybe if he had a chair and a hand held hose with a sprayer he could bathe himself more easily.

Less frequent bathing is fine with me, but my dh gets sick from his bad smell. My dh and I think that ds is detoxifying chemicals from his body, and when he doesn't bathe, they stay on his skin keeping him sick. This is our biggest concern when it comes to bathing. So, when he doesn't bathe for two weeks, ugggh! We both agree that we treat him like and adult, so I guess if his teeth rot and his health is worse because he doesn't bathe, that is his decision. I just feel bad for ds, I don't want to give him a hard time about the bathing anymore because I am trying to remove negativity from his life. So, I want to make an improvement in the bathing without nagging, guilitng, etc.

I have recently read a book called NVC, non violent communication. It really opened my eyes to the manipulation I was using when I would offer him money or to buy him a cd to bathe. So, I have stopped nagging, and manipulating or coersing him into bathing. I want to use NVC on him to talk about it, but every time I go into talk about it I get all tongue tied and my mind goes completely blank. This morning I took the book in with me so I could remember Observe, Feelings, Needs, Requests. I told him that I was learning a new way of communicating and wanted to talk to him using NVC. I explained NVC a little to him. DS ended up trying to use NVC on me. DS said "I am disabled and bedridden which is depressing and I need solitude. Get out of my room". So, I left his room.

The underlying reason for not bathing has to have something to do with how depressed he is, about not being a "normal" teenager and getting to go to school, or hang out with friends, or live a "normal" life. My dh talks to ds every night after work, and deals with his depression. Do you have any thoughts on how to make life more positive for a bedridden depressed teen? Maybe that is the real issue I am supposed to be dealing with.

[khrisday]

I just now saw your reply here.
That sounds really hard. And you're right- the deptression is probably the root of the problem. I woudl talk to him about having some counceling. Perhaps you coudl even find someone willing to travel to your home for sessions.

[Bestbirths]

Yeah,

Counseling is $150 to $300 per hour, so since we would be paying out of pocket, there are several things we are trying first, but I do have the name of a counselor who specializes in MCS, who is $150 per hour, and the other one who specializes in MCS is $300 per hour. A friend of mine just spent $1,200 with the $300 per hour guy (who is famous and written books for trauma survivors) for her teenage son with MCS, the initial session was four hours. I wonder how we would keep up with that kind of cash output, so it is amazingly stressful to think about.

....... on a positive note, my ds has been named "Youth Representative" for the MCS Beacon of Hope foundation, and 20% of any fundraising I do for the organization goes directly into an account to cover the costs of ds's medical treatment. I just have to learn to be a fundraiser..

[khrisday]

Bestbirths,
That is awesome about your son, but there HAS to be a way to have counseling covered for your son!
OK- I am assuming that you don't have private health insurance. If you do, they should be covering mental health services as well (I believe that's federal law)
If you don't have private health insurance, find out what low/no cost health insurance programs are available to you.
Your son should be able to get a Medicaid waiver since he has a disability (and again I am assuming you are in the US), and that may very well pay for counseling.
Contact social services, Menbtal Health services or disability services in your area to see of there is a program he can get into. Is he enrolled in school, does he have an IEP or 504 plan? He may even be able to get some counseling from the school.
There are some counseling services which use a sliding scale, which would at least be less money.
If you tell me where you live (PM me) I can try to find out some specific services for you. You should NOT be going through this alone!

[Bestbirths]

I think we are falling through the cracks!

I apologize that this is so loooong......I would just like to explain the situation clearly. You are right, we don't have private insurance, except on my dh through his work. We have checked out insurance for the whole family, and it is expensive. There is a one year preexisting condition clause with this particular insurance company, so we would have to pay premiums for a year plus pay for all of his medical expenses out of pocket. To afford both we would have to have more income, which is why we haven't taken the insurance plunge so far. It's one of those famous Catch 22's. Many of the treatments for his MCS condition are experimental and not covered by insurance, which makes insurance seem very unappealing for DS situation.

DS is homeschooled, so he doesn't have a IEP. He is disabled, but not on disability. From what I understand, you have to be older to be on disability (18). If we were very low income, we could get SSI for him, but we are middle incomed, so I don't believe we qualify. I just thought that I should still try, because our income may be still low enough to get him a Medicaid waiver. This opens up another can of worms.

A Medicaid waiver would take a letter of disability. There is a Doctor that DS can go to for a disability letter who is in Texas, but they require thousands of dollars of tests (not covered by insurance) that the disability judge will need as proof of disability. We would be looking at basically $3,000 to get the letter, and still we would have purchased no treatment for DS. I think treatment is a priority over the letter right now, so its one of those famous catch 22's.

Once you have gotten your tests and your letter, getting approved on disability is kind of like chinese water torture in this country. It is one of my soapbox issues, but I'll spare you, except to say that's how some MCS victims become homeless by the time their disability is approved (2 1/2 years)!! By the time they recieve benefits, they can be finacially devistated and unable to afford the kind of special housing that the illness requires.)

I thank you so much for your compassion and empathy. The bright side of this situation could be the new charity that I am going to be working with. The MCS Beacon of Hope Foundation that will be able to help pay for DS medical expenses is like a miracle. It is too soon to tell at this moment how much or if any they will pay for since the funds depend to a large degree on fundraising that our family initiates. 20% of all the proceeds earned by the foundation using my son's story goes directly into an account for his medical expenses. 80% of the funds go to build homeless shelters all over the country for the MCS survivors, many of whom are homeless and unable to use regular homeless shelters because of their sensitivities to the chemicals and fragrances used there. I'm hoping we could find corporate sponsors (Kind of like the Ronald McDonald houses are sponsored by McDonalds).....maybe Wild Oats grocery stores would sponsor this charity, and some of the other more environmentally savvy businesses could be approached. This is kind of a side issue really because, like you said, I should be looking for some counseling on a sliding scale. I know of a place I can check out.

In the meantime.......

I took DS to a barber....his hair is falling out and the barber was concerned that he is going bald. It was really freaky, I could see where the bald spots were and his hair is thinning visibly in the front two inches of his head. Frightening! This could be from his sudden weight loss of 30 lbs this year, or his illness, or not bathing.

DS has an Occupational Therapist coming to the house who specializes in CranialSacral Therapy. We are hoping for some releif with his headaches, tinnitus, and nausea through the CranialSacral Therapy.

I will be glad to check into any counseling resources you may have a lead on. I'll PM you with our area.

[khrisday]

O man, I am looking for things right now, but let me just say here that you NEED to apply (or at the very least check the SSI website to see if your income qualifies you) for disability right now. It is based on income (and that is family income for a minor- yes, a disables minor can apply), but the limit is not that low, and if you can get it it will make a huge difference. The Medicaid waiver is not income dependant (that's why it's a waiver- it's specifically for disabled people who don't meet the income criteria) but if he qualifies for SSI then it will open the door to Medicaid), but you will need some kind of documentation I believe. I do believe though that if you can just take him to a regular doctor, and he can document the ways in which your son is affected and limited (being bedridden, that shouldn't be too difficult) even without a specific diagnosis, that may be documentation enough. Has he ever had a definitive diagnosis? Even if it's old, I would submit it. SSI may just have him see one of their doctors to update the information. It woudl be free for you, and you woudl be no worse off.
I will PM you with whatever I can find.

[Bestbirths]

Thank you so much for all of the links. We do have a disability letter from the expensive doctor in Texas. The diagnosis was Multiple Chemical Sensitivity. We spent $2,000 getting it when ds was five. Since it is nine years old, I am pretty sure it is too old, but I always will send it with the forms anyway. I sure am glad you gave me the link to heathwave insurance, because they have recently raised their income levels, and where we didn't qualify two years ago, we may very well qualify now....I have to get my mountain of paperwork together for them to process another application. I'll PM you and keep you posted!!! P.S. It has been a week since he has brushed his teeth or bathed.......and he reaks SO BAD. Tempted to pay him money to bathe again....but I won't. He has had friends over, they haven't said anything. His Grandpa came over and sat by him, talked to him, and gave him a huge hug and didn't say anything. I told my dh, "Aww, isn't it sweet and shows such unconditional love how Grandpa just gave ds a big ol' hug and sat so close and talked with him, and didn't say anything about the smell" To which my dh replied "Yeah, Either his smellofactor isn't working properly, or I'm going to be getting a phone call in about an hour" Well, we didn't get a phone call......So, DH thinks his Dad's smellofactor is broken...LOL!

[Bestbirths]

You are not going to believe this....

DS is at camp and he is bathing!!!!!! This is the second year we have sent ds to camp. It's not really a camp, it is a college, UCSC, in Santa Cruz. Since DS scores in the top 2% on his SAT's he is in the Johns Hopkins program, and they have a 3 week camp where the kids get together with other top 2% kids and take courses taught by college professors, they actually stay in the dorms. DS has almost a full scholorship to this camp. They also are very accomodating for his disability.

DS can function on a more energetic level at this camp because of the beach and mountain air. Beach and mountain air is something that is recommended for this illness, and it really seems to help him so much, we have been considering moving there for his health. DS would like to attend college there, thats his dream....

So, we send DS off to camp. I sent him with one bottle of Shampoo for the entire three weeks, hoping that I wouldn't get the whole bottle back full in three weeks. But, he promised he would bathe there because the water there doesn't make him sick, and he feels better there, well enough to bathe. So, I get a call from DS, very quick. HE says "I'm out of Shampoo, can you send me a few more bottles.....and uhhh, they have these "dances here", and there are these ten girls who really think I'm cool, and they have been teaching me to dance. They think my long hair is really cool...so anyway, Uh, I gotta go now, bye...."

[khrisday]

That is so wonderful to hear!
YAY!!!

[Momma Aimee]

great

It is good to hear things are going well.

Also, with depression, look at diet (Food and Mood is one book). It could help.

Aimee

[Jane]

That is great news, about the camp. I always wanted to go the Johns Hopkins classes, but I didn't think my family could afford it. Hindsight is 20/20, you know?

I would suggest that you look into a lawyer that specializes in disability. They usually take a percentage of checks you eventually get. I have 3 family members that have been on disability/SSI/etc. at one point or another. They each tried without a lawyer and didn't get it, and then did with a lawyer and got it, plus back payments. Lawyers often know which doctors are trusted by the gov't. You might not have to get so many tests if you pick the right doctore (sucks, I know).

As far as bathing, I would suggest a chair in the shower or tub. A lawn chair works great for the money. Often adaptive equipment is $$$ because insurance pays and it's rare stuff and they can get it. I think a sling chair with lift for bed to tub was about $1000. If you could at least get him watered down, you know?n Maybe it will be a mute point when he gets back?

Personally, I would look into public schools for an IEP. Often schools provide home teaching to sick kids. It's an option, as you can certainly refuse anything. Schools often have adaptive equipment, too. Maybe even a pool for hydrotherapy. I honestly don't know what you are going through, so maybe you've already explored all of this. You sound like you're doing pretty well in a tough circumstance.

[Momma Aimee]

good idea

a plastic lawn chiar and a shower than he can pull down use might just slove the problem; and maybe help in general as he feels more independant and impowered?

Maybe could brush teeth (shave?) while sitting in tub. Cheap shower stick-on mirror and shelf would allow that.

Aimee

[Bestbirths]

Bless You all!!!

I love these ideas ladies. Really, I can't thank you enough!!
I think a lawn chair is more "teenage" friendly than the medical
chair would be. I am going to see if our lawn chairs fit. The idea for the stick on mirror and shelf is great! He just shaved for the first time. These are some ideas that I can do inexpensively, and the lawn chairs fold up so they don't take up as much space in the bathroom. Great ideas!!

[Momma Aimee]

let us know if you need any more brain storming.

I know I am not you; but I'd guess -- having been a teenager -- that anything to encourage indepenance would be good for the spirit and maybe his development? Also make him feel more normal.

Aimee

[Momma Aimee]

another idea............

what about instead of "bedbound" alone in his room........"couchbound" out in the house with you and the family?

Aimee

[Jane]

Re: Bless You all!!!

Originally posted by Bestbirths
I think a lawn chair is more "teenage" friendly than the medical
chair would be.

*evil grin* You know, if you want to be teenage friendly, you could get one of those totally tacky...uh, wonderful neon print inflatable chairs. I'm kidding you know!

If hygeine continues to be a problem, I would suggest checking out the "backwoods camping" store in your area. For me, that'd be REI, but I don't know about everywhere else. They have lots of water-saving quick ways to decrease the grime. It's more fun to shop there than the medical supply house. They have a nice emphasis on self sufficiency and are *sometimes* natural products.

PS...I like guys with long hair. Has he considered dreadlocks or braids? They have to be washed but not combed and styled. Very punk these days.

[Bestbirths]

DS luckily has almost a full scholorship to the John's Hopkin
s Program camp, but it still kills us financially to send him we have to eat cheap food and go without spending money, go into debt, etc. THANK GOD for the child tax credit, because thats what I'm using to pay off the debt for most of the John's Hopkin's thing. I wouldn't have even sent him if he wasn't so depressed and looking forward to it. Then, I think next year we won't do it again because it puts too much of a strain on the rest of us......But if it solves the bathing problem by getting him interested in girls, it WORKED, I guess it was worth it!! I guess it is worth a million gazzillion dollars! He gets many other benefits from the camp too, like email friends, and maybe he learned some engineering, that's what he was SUPPOSED to be going there for wink. wink...

He actually used to be on the couch, but we homeschool our other four kids, and he doesn't like any noise. Maybe its the age, but I swear he doesn't "appreciate" being with the family. Maybe it is because of his tinnitus and headaches, but he prefers a dark, quiet room to himself.

He was living in the livingroom on the couch 24/7 last year. He likes to sleep all day and be up all night. He is nocturnal. The noise and activity that we do during the day was disrupting his sleep schedule.

At the time, his younger brother had a room to himself and the three girls shared the basement. Our strategy was to put his younger brother in the basement with the girls (which has caused all night partying like its 1999 down there). I should start a new thread for what to do about that, but I digress.... We did this mainly because the new couch and livingroom was starting to stink. Also because when we made any noise it would bother ds. We put ds up in a quiet room by himself, with the shades blackened by dark fabric so the light doesn't bother his headaches. A dark hole, but that what he wanted. And it worked for me too, we could homeschool to our hearts content in the livingroom which is an open concept with the kitchen, so lots of noise and activity goes on there.

He stays up all night alone, which is what he likes to do, and sleeps all day. This makes it very difficult to get him meals, but I usually get him something before I go to bed, and dh gets him something early in the morning before he goes to work. It also makes communication and interaction more difficult.

I will check out the backwoods camping. I will ask him about dreads or braids. I love these ideas!!

First I am banking on his new interest in GIRLS. I have read on other posts from other parents that their kids started bathing when they discovered girls. With his lifestyle, it would have been near impossible for him to discover girls if we didn't send him to this camp. I still can't believe it! I wasn't expecting this solution to be so quick....I promise not to complain about all the adventures we end up having from ds getting interested in girls. I mean, maybe he will want to get out and take an art class or go outside... We pick up ds from the airport tonight......I'll keep you posted on if he's clean when he gets here............... ahhh the power of love....

[Momma Aimee]

I didn't realize the light and sound bothered him so much; sorry for the bad suggestion. Just thinking it might help depression.

I think some of it will get better; I think some of it may be age as much as disablity.

Let us know; were here to help.

Aimee