DD & MIL's Issues

[mollyanna58]

In all seriousness, you are a hero, Pat.

[Opti]

You make it through the day, one day at a time, one hour at a time if needed. One of the  toughest issues I heard recently, involved a wife trying to keep her husband in the facility longer, because the home he wanted to return to, was being foreclosed on. They were scheduled to be homeless within the week.

There are saints everywhere. There are struggles people endure, that amaze me every week.

Then there's my new co-worker, but that's another story.

[Deleted]

 So sorry for your trials patstab. I am glad she is still in apologizing mode. 

[mollyanna58]

If you go to the fair, you could probably get some good comfort food.

[Value Buy]

Pat- here is some advice,
from your last comment about MIL saying you are getting her out of the house, and you do not know where that is coming from. You have made other comments on this thread, that you do not know where these "allegations" about MIL or your daughter is coming from.
I have a sneaking suspicion, your daughter might be overhearing your conversation on the phone with your husband and she is telling her grandmother about it.
She may have Williams's but that does not mean she is not paying attention to conversations you have. This goes for your talks with hubby about her also.
Be sure you are in a separate room with the door closed and you know where your daughter is before making these conversations.
I do not know if you are a "loud" speaker when you talk. Some adults have no idea how far their voice carries when talking, especially on subjects they are upset with. 

May I also suggest, you look into some campgrounds within 90 minutes of the house, and consider a seasonal rental, and parking the big camper there instead of keeping it in the barn. Probably would not cost more than $1,500 for the summer season, or just lock in weekend dates in the early spring to cover the summer months.

Use it every other weekend as a getaway for you and your daughter. Tell MIL that you are gone on vacation, unavailable, etc.
Maybe get a disposable cell phone for yourself for her to contact you if necessary, and tell her your regular phone will be out of cell service. At least the regular phone will not ring off the hook, and you do not have to answer the disposable unless you want to.   

[CCL]

Have you looked into Bloomington Hospital at all? Since IU Health owns them now, I would think some of their docs from the medical school in Indy would travel down there periodically. I know years ago the IU psych staff physicians treated patients at Wishard (now Eskenazi).

[mmhmm]

Don't know if this will help, or if you already know of it, Pat; however, I did find this that might help you locate someone who understands the syndrome:


link

[Opti]

Pat, I've lived in Indiana and I do know what you are talking about. However, you have two choices - continue to pander to small town fears and do everything yourself, or just let it get out there and shape the narrative. Pay the $10/hr. etc. DD is who she is. If you do it right, both the good and bad will get out.

[zibazinski]

Can you really get someone for $10 an hour? That's what regular babysitters get and they aren't babysitting adults with issues. We paid 25 an hour for DH's aunt's husband and he just had dementia so repeated himself for hours on end but didn't scream or hit. Tiny guy he was, poor thing. 

[Deleted]

Oh Pat, so sorry that this episode is continuing on. Do you have Comfort Keepers in your area for respite care? In FL they have people that specialize in Alzheimer/Dementia patients, but not in all states. Just wondering if that might be a temporary option for you while you are looking for assisted living. 

Also, with this being summer, are there any SPED teachers in the area that might want to earn income by providing respite care for you? They would certainly be trained and used to the behavioral issues if they are certified SPED. 

[Blonde Granny]

My Mom went into assisted living by paying 1 month as a private pay resident, and accepted the pending Medicaid Waiver. I think the next couple of months were eventually paid by Medicaid then the waiver was approved.

Good luck, and keep pressing the fact that she will be self pay as needed until the waiver is approved.

[Bonny]

Good luck Pat. You have certainly put up with more than most people could handle.

[azucena]

Pat - I don't post very often but have been following your thread.  Do you have a facebook account?  I did a quick search on Williams Syndrome on there and at least 5 groups came up.  I didn't go any further than that but I bet you would find at least one of them useful.  I follow a group for my 4 yo neice who has DeGrouchy's Syndrome which is also very rare.  My sister (her mom) has been able to ask all kinds of questions about behavior, expectations, doctors, services, etc.  It's invaluable really.  Might be worth setting a up a new facebook account to start looking into those groups.  Some are set up to be private so no one else can see what you're posting about.  My sister found someone within a few hours of her with a 5 yo DD with the same syndrome.  Now, they can get the kids together on ocassion so each doesn't feel so 'different' anymore.

Hang in there!

[NastyWoman]

This is now 3 years ago, but I think of this event (see link) everytime I read your posts about your daughter @patstab. It really is digusting how we as a nation drop the ball on taking care of the mentally disabled adults.

www.nydailynews.com/news/national/illinois-mom-drops-mentally-disabled-daughter-bar-tennessee-won-back-article-1.1111948

-hug-to you.

[NastyWoman]

Unfortunately I 100% believe you @patstab. I had no idea until I read that story. And at the time everybody and his brother was condemning the woman. I too had a hard time grasping the "why" and started to looking into what else she could have done. Nothing like the digging you do in trying to find a good solution for your DD, but I came away convinced that society should stop judging others for what it is not willing to fix. I still can't say I agree or condone what she did, but it has put your and other parents' in similar situations in perspective for me.  And all I can offer are  and lend an ear. 

[Deleted]

Yes, everyone assumes that we have all these fabulous safety nets in place for people that really really need it. But in reality when you try to access the assistance, there is hoop after hoop to jump through. 

Hugs from this side too patstab. You are a champion getting through all these years and I hope that some of the groups will respond to you.

[busymom]

I totally agree with @rockit.  Everyone who doesn't have someone in their home with special needs assumes the "system" is set up to help you, & not only care for your child, but pay for it.  It was only by the Grace of God & working really hard that DH & I didn't lose everything we had when DS needed the most intense therapy when he was younger.  Insurance couldn't care less if your child needs therapy, & the copays & therapies that are out-of-pocket are budget-busters.  I can only imagine what things will be like when DS is an adult, but I've been told by several people who have moved to our area from out of state that our area is much better than average.  Just because some states have a reputation for taking care of their special needs residents, doesn't mean they follow their own laws, or don't have waiting lists that force you to wait for years, not weeks or months.

 Hugs for all you do for your family, Pat!

[Opti]

Jul 15, 2015 19:56:05 GMT -5 @patstab said:

I'm telling you no one has any idea that there is NOTHING, NO HELP out there.

You have to search and search, lets see if I even get any calls back from ANYONE.

The state disability lady sent me a list of places to try.  Some are respite in Indianapolis

daycare type, I'm supposed to drive 100 miles and drop her off??

Some are for senior citizens, some young children.  So far I've started down the list

and I have found nothing to help.  But at least she tried and sent me that, that is more

then most do and I thanked her for it.

She is still telling me when the application is approved, hope it will be, with an IQ

of about 60 it should, then she is immediately eligible for a group home and respite,

but pending on availability in an appropriate place. She said most stay till they die,

so few leave.  She did say the wait time has been reduced a lot over the last few

years.  I think the feds put pressure on the state finally.

Government programs are the slowest of the slow. Its like big corporations, only on Steroids. You need to do everything correctly, hurry when there is a deadline, and patiently sit on your hands if funding has been spent, etc. You will get there. Persistence is key.

In a related note I did get my $43 fee out to the IRS so I could do a payment plan against the tax debt that I did not wait to include in my BK. (Yeah, there are bits of other two years in there too ... but that's another topic entirely. Blood -> stone; Stone -> Blood; rent, food, prefers not to live on street... TMI. )

To your situation kind a sorta. This IRS fee payment had to be received in July. On or before the 28th, but definitely not in June because it would be counted as a June payment. In reading the long doc they sent with the agreement, the government is allowed by law 10 days to actually receive the payment, so in theory that may mean one has to mail said payment between 7/1 and 7/18 to hit that target. This is just IRS crap. My guess is the forms and placement stuff you have to deal with are much more complicated/time variable. Sorry.     <--- Remember to eat as needed. Chocolate does improve mood!

[mmhmm]

Pat, I'm so sorry, hon. I know what a rat-race it really is. The system in place just doesn't work. It's sad. These folks are ones who really, really need help (as are their caregivers) and there's not a blamed bit of it out there for them!

[Opti]

Jul 16, 2015 0:54:40 GMT -5 @patstab said:

I have 2 other moms on the Williams forum saying they are having severe issues like me.

One has tried psychs with all kinds of meds, she says nothing has helped, she has severe

anxiety attacks too. She said the last psych told her to call the cops, she said needless to

say she didn't go back there again.

Another said her daughter was very active, volunteered, had friends, was ok and all of a

sudden she is having attacks where they have to have she or her husband stay 24/7 with

her, they don't know what happened.

These sound like my daughter, one is age 32, I don't know the age of the other. They are

also looking desperately for someone to help them. What in the world can be wrong with

them? I'm starting to wonder if its early dementia? 

Like I said the moms won't say anything till someone like me asks for help then they

start chiming in.

This syndrome only surfaced back in the 60's and 70's, now how can that be?  Also with

better care they must be living more.  I still think its crap in our food and chemicals we

have been exposed to. 

Well not worrying anymore tonight.

Pat, some of the issues health-wise adults, children etc. are having might be related to gut health, i.e.

good intestinal flora. Your diet and DD's tends to be seasonal given all the produce you process, etc. Maybe she is eating too much food with sugars in it, too much grains for her body or just not eating things that make the body happier.

You might want to check it out. I know eating badly or very well does influence my mood.

[busymom]

Personally, I'm thinking all the chemicals they spray on crops now has something to do with the increase in special needs children. (Gut health is a major problem for children with autism. And, contrary to what the media says, there is no family history of autism in either my family tree, or DH's.)

Neither of my Grandfathers used chemicals when they farmed. They just worked really hard, & got the kids to help during the really busy times of the year. Yes, going chemical free is labor-intensive, but frankly I'd rather go back to those days than now when I'm constantly deciding on different produce whether to pay the $$ for organic, or if the non-organic is safe enough...

[seriousthistime]

Pat, since you sound connected to the Williams Syndrome networks, you probably know about this place:

medicine.buffalo.edu/departments/psychiatry/education/child-fellowship/curriculum/rotations/williams-syndrome.html

The University of Buffalo Medical School has clinical rotations for medical residents in psychiatry.  This means they have at least one psychiatrist knowledgeable about Williams.  It also means they are training other psychiatrists about Williams.  

Maybe you could place a call to them to find out whether they can help by seeing/treating your daughter, or getting info on the psychiatrists who have done the rotation and where those doctors are now. 

I know Buffalo is a long way from Indiana, but once the motor home is running, it could be worth a trip to go there, stay for a week or two, and take advantage of the services they might offer.

------------------

I have a friend who has several siblings who are developmentally disabled.  Each one is unique so she has had to learn about multiple issues and how they manifest themselves.  The siblings lived with the dad until he died.  My friend had to deal with them then.  All the siblings are in group homes now.  One of the siblings has severe mental health issues and she was able to find a home for him. It has been a scary and turbulent time for them all, but each of the siblings has blossomed in ways they wouldn't have expected.  Your DD could be a different person, living with a different set of rules and freedoms in a group home setting.  Don't give up.  You have said she doesn't act up when DH is around. 

[Wisconsin Beth]

Jul 16, 2015 7:06:13 GMT -5 busymom said:

Personally, I'm thinking all the chemicals they spray on crops now has something to do with the increase in special needs children. (Gut health is a major problem for children with autism. And, contrary to what the media says, there is no family history of autism in either my family tree, or DH's.)

Neither of my Grandfathers used chemicals when they farmed. They just worked really hard, & got the kids to help during the really busy times of the year. Yes, going chemical free is labor-intensive, but frankly I'd rather go back to those days than now when I'm constantly deciding on different produce whether to pay the $$ for organic, or if the non-organic is safe enough...

Not to be horrible but I think part of the equation is also better health care, etc.  I'm not researching numbers but aren't infant mortality numbers hugely down from 75+ year ago?  I think some of the increase in special needs comes out of that.  Previously, they may not have survived to adulthood.  I think it's similar with dementia patients too - they're living longer and shutting people up in the attic isn't an option anymore, thank God. 

I don't know what the solutions are.  And I agree that increase chemical use plays a role in this.  But it's not the only player. 

[Deleted]

My DD researches nutrition a lot and decided to move to the clean eating lifestyle (not sure exactly what to call it because it is not a diet). Since one has a gluten allergy, that is out of the diet too.  The children's behavior has completely normalized since she has done that. It is making sure to buy foods that are closest to their natural state. 

Breakfast is pancakes and she adds almond flour or peanut butter to up the protein levels. 
Lunch is spinach, nuts, goat cheese, chicken or salmon or farm eggs (meat/egg content is driven by budget).
Dinner is quinoa, roasted peppers or sweet potatoes, small amount of meat like pork or chicken.

patstab, does your daughter drink diet drinks? I think those are a big contributor to emotional meltdown episodes in my family. I bought what I thought was flavored water for the kids and their behavior turned real bad. I ended up stopping the car and grabbing the bottled water - it had aspartame in it. OMG what a mistake!! It did not say artificial sweetener on it on the front. I was so mad at myself. I had to apologize to mom profusely to mom when we arrived to her. 
If she drinks Diet Coke, try to switch her over to the Glass Bottle Coke from Mexico (made with cane sugar). I know you have mentioned concern over her weight in the past; but work that with exercise & get her off any diet drinks please!

[Please note that I have no interest in people telling me sugar makes no difference in kids - the studies they keep posting compare reactions of fake sugars vs. sugars. Clearly they have not actually READ the study itself.]

Disclaimer: I think every person's food diet that is best for them CAN be different. We all have different histories and genetics. My family's history is a long line of agricultural farmers. So the clean eating may be closest to what our bodies do best with. 

Double Disclaimer: The fact that I come from a really long line of tea-totallers ticks me off. If I have a drink, I know I am going to have a rotten stomach the next day. Grrrrrr!!

[Opti]

I'm am not convinced this is psychological versus physical and that worries me she may be

getting psychotropic drugs and don't need them. The drugs could be causing issues also.

My concern would be it is physical and using the drugs will cover the symptoms if it works, thus not really solving the underlying problem, or two creating more issues as psychotropic drugs are known for side effects. Many include the very effects they are trying to treat.

Pat, you haven't posted enough info here for me to give even halfway decent advice on this, but a psychologist/psychiatrist would not be my first stop. You could try, if available, simple things like acupuncture to balance her meridans, a naturopath, a registered dietician, chiropractor if she tends to get her body out of alignment, etc.

Indiana is Indiana, but as some have pointed out here you do have Bloomington, South Bend, and Lafayette/West Lafayette areas to find stuff in in addition to Indy.

[Deleted]

ICE has splenda or something like that in it. They call themselves 'natural' but they are a proprietary, processed sugar substitute. Really highly encourage you to try for cane sugar drinks if she needs that kind of beverage.

I got one at the organic store last week, Hansen's Root Beer, which tasted very good. There's also a brand, Blue Sky, but have not tried it yet. Here's the hansen's site if you want to look at their products. I like root beer since it doesn't normally have caffeine in it (but some of the commercial ones do).
www.hansens.com/us/en/products/soda/hansens-soda/creamy-root-beer/

[Deleted]

Jul 16, 2015 20:20:04 GMT -5 @patstab said:

She went to a chiropractor for some time, we had massages, she didn't like that, I didn't either, those were to rough. They

do acupuncture there so may try that.

I agree with the diet sodas and soon as what we have are gone I'm trying something else I have bought the new drink ICE and she is drinking some of those.  I try to raise and buy organic, even milk which is expensive. I know me stopping diet sodas has really

helped me and I've tried to explain to her how it helped.

Also she loves McD's crap, I always let her have it until I've really started researching foods. We are loading our bodies with stuff that

isn't even food. I'm trying to switch her over to Subway which is not perfect but is better. 

Williams kids are very picky eaters, she would live on McD's and spaghetti if you let her. She does like corn, I have to make her eat other vegetables, she isn't even much on fruits. She needs to get back on her liquid vitamins and minerals.

Today I worked at MIL's, she slept a lot of the day we were up very late last night. She was ok all day, then on the way home

started into one of her fits. She was a mess, told her to take 2 glucose tablets, I keep them everywhere and in about 10 minutes

she was ok and has been since. I don't understand it and it doesn't always take her out of one.

hypoglycemic maybe?
thyroid problem maybe? Has she had the detailed thyroid tests done (not just the TSH they do with regular physical)?

It is a royal PITA, but DD's kids eat small meals constantly. PITA for me because I am not a cook & kitchen work is the bane of my existence. It is one way to deal with hypoglycemic tendencies.

Not that you need another task, but you may want to log (or have her write) times/foods each day and see if it maps to her meltdowns at all.

[Works4me]

Retired medical social worker here - do not get me started on the lack of support services for the types of illnesses you are dealing with. Sometimes there is just nothing that can be done in caring for the elderly. People who have not been declared incompetent  have the right to make really bad choices and I personally support that. In my experience sometimes there is just nothing that can be done to prevent accidental injury or even death. That is just the way it is and there just may be nothing you can do about it. I got a lot of crap from some of my father's neighbors about his driving but DMV renewed his license, State Farm insured him and all I could do was recommend that if they were really concerned to report him to DMV. I chose to share their concerns with him but despite hitting a parked car a block over, there was nothing else that could be done. It sux but that is the way it is.

A few weeks ago I was reading up on Williams Syndrome and IIRC, I saw something stating that people with it do indeed have metabolic issues. It seems to me that your personal experience with your daughter supports their findings - I completely agree with you that it appears as if something physical is going on with her, something that maybe combines with her mental and psych issues seems to be pushing her over the edge. Would you like me to look for the link? I have not cleared my iPad in sometime so it should be there.

I have one thought - what about trying to find a competent person to beta hired companion for her? I am thinking of maybe an older student, Special Ed major or even a nursing student. Are there any major universities near you with graduate psych programs or anything like that? What I am thinking of is someone with some life experience and compassion that would be willing to be a " friend" to your daughter. $10-12 per hour could be a very good wage and it could be well worth it for you to get a break. Even someone that is semi-retired - if I was closer to you, it is something that I could see doing once a week or so, just to give you a break. Things like going to a movie or out to lunch - even driving her to distant appointments. It could maybe help with her loneliness and feelings of isolation if there was someone and something just for her a few hours per week. It could be well worth the money if it were to allow you to manage her home longer. It just has to be the right type of person.

You and your entire family will continue to be in my thoughts and prayers. You are doing a truly remarkable job in an unimaginably difficult situation.

ETA - I also think you are spot on about DD aging more quickly - in addition to possible dementia, I also wonder about CVA's (strokes,) occluded arteries, advanced hearts disease and many other possible problems. If possible you might also want to look for a good neurologist, cardiologist or even just the best diagnostician in the area. I recommend asking anyone who works in the medical field in the area for referrals and maybe contacting the various Medical Associations in various counties and states in your area - maybe even hospital social workers. 

[Opti]

I agree with Rockit. Skip the normal commercial non-cane sugar options. GUS - Grown Up Soda, IMO is great, and fairly low sugar compared to others. (Pricey!) I also like various Reed's Ginger-ales and some of the stevia-sweetened sodas. My favorite is non cola Zevia brand.

[mmhmm]

Another thing you might try to curb the soda-drinking is flavored waters. Some of them are pretty darned good. I got them for mother to encourage her to drink more water.