About Willow's Son

[Guest guest]

I have never told you about my son. He's my only

child, the love of my life and he is floundering in

his life dealing with his medical and social history.

I have a small family - just my mom and my aunt and my

son. This is one of the things that can really upset

me like I am tonight. I called him today and talked an

hour or so. I called his dad as well. Let me start

with the first though so it will make sense.

I have a genetic bleeding disorder that in the

pre-AIDS days was treated with a portion of whole

blood. The clotting factors are in the plasma, but

when they separate the plasma from the cells, a few

red cells get by. I am Rh negative. I got enough Rh

positive red cells that I formed antibodies against

the Rh protein. When I got pregnant with an Rh

positive baby, my body immediately started breaking

down his blood, making him dangerously anemic. I had

32 ultrasounds, 14 amniocenteses, and 2 intrauterine

transfusions to keep him healthy. Labor was induced at

35 weeks (5 weeks early) so that he could be

transfused in the high risk nursery instead of doing a

more dangerous intrauterine transfusion. He suffered a

few long-term problems related to prematurity. He had

low muscle tone and could not nurse effectively. He

also could not tolerate milk OR soy based formulas. We

ended up having to make a horrid concoction of roast

chicken or beef ground up, apple juice and a calcium

supplement. He ate it through a nipple with a big hole

cut in it. He had to have physical therapy and

occupational therapy until he was 2. I worked full

time, did all of this, and he was in the MD's office

about every other week. It was exhausting both for me

and his dad.

When was 4 he started kindergarten and loved

it. His IQ was 155 and he was extremely bright and

outgoing. He could read before starting school. During

Christmas break in his first grade year, a very

troubled child hit in the head with a

skateboard. He had a goose-egg on his forehead, but

that and a headache was all that appeared to be wrong.

After the break, nothing was the same. He couldn't

read a complete sentence without stopping. It turned

out that he was having 40-60 petit mal seizures/hr. It

took a couple of years to get him controlled with

medicine. They take kids off of seizure medicine when

they hit puberty or turn 13. He was med-free for 4

years until his senior year of high school. He then

had a grand mal seizure on the bus on morning. He has

continued to have seizures intermittently to the

present day. He had been diagnosed with ADHD and was

started on Ritalin for that. He was really

oppositional when it came to taking medicine. To this

day he doesn't always do it. He has never been able to

ride a bike or get his driver's license because of

seizures. He went from being a straight A student to

being a D-F student. He has a great imagination and

many good abilities. He just can't handle an academic

situation.

As I write this, he has just finished his 7th semester

at the community college. He has only taken 2

classes/semester and has sometimes dropped one of

those. Attendence is a problem. He has lots of

migraines and GI problems. He has almost continual

sinus problems that he refuses to treat with OTC

remedies so he ends up on antibiotics.

I love my child with all my heart. It is so upsetting

to me when he won't do what he needs to do to take his

meds (use a pill container so you see if you miss a

dose). He stays home with the slightest discomfort and

misses too much school. He only showers 1-2 times a

month. He only combs his hair when he showers. Heaven

knows when he brushes his teeth. He's never held a

job. This year was the first time he's put in any

applications. Since he can't drive, getting to work

would be a real problem. In the end, my -ex is paying

him out of his pocket to do some computer work for him

at his job.

I do not see how my child is going to function in

life. He does not straighten things up and keep them

organized so he can find them again. His hygeine is

not good. He's 21. I need him to be an adult and live

his own life. He needs to be on his own.

When I first got so sick I couldn't work, my husband

did not believe I was sick. He taught that I

was not sick and neither did much to help me. When I

got my disability, I swear my husband was jealous that

I got a check for sitting home doing 'nothing.' He

started saying that he was disabled too (and thus

could do nothing to help me). He said it often enough

and did have some cardiac problems. He is not on

disability, but he has pretty serious heart problems.

They just implanted a difibrillator in his chest. He

is now working full time like I did for years when he

is so sick he needs to cut back to part time. He was

12.5 years older than me so he is facing retirement in

18 months. now looks at my disability with the

same envy that my -ex used to. He figures he has 2

sick parents and he's had health problems since he was

5 so disability seems inevitable to him.

One day my husband will throw him out. I can't say I

blame him because financially and health-wise he's at

the end of his rope trying to deal with a child who

won't do any of the things he needs to be doing at

this stage of his life. I talk to by phone

almost daily and he visits me for 3-4 weeks a year. I

am always trying to troubleshoot things with him to

find solutions that he is comfortable with and might

do. His situation is one of the few things that gets

me nervous and agitated like I am tonight. My stomach

is in knots and a headache is lurking. I could cry

easily. I can take extra meds or try to deal with it

in non-medicine ways (my choice).

I need input from you on the situation. Thank you.

; )

Willow

[Guest guest]

Dear Kerry,

Thank you so much for your wisdom in looking at my

situation and your understanding. I may take you up on

writing you sometime and you are free to write me if

you need to as well.

((( hugs )))

Willow

--- ~Kerry~ <kerry-lane@...> wrote:

> Willow~

>

> Hi Hon *hugs* .... My son is 14, he has learning

> difficulites and they

> believe he has aspergers syndrome. I can only read

> your post and feel

> anxious for you, as parents of special needs kids,

> (let alone being ill

> parents) , the one hope and goal we have for them is

> that one day they will

> be able to be productive members of society. My

> hopes are with your son and

> your family.. I know u will do everything u possibly

> can for your son,

> within reason. I am just now heading , head long

> into trying to get my son

> prepared for adulthood and it scares me every day...

>

> I am always here if u want to talk...

>

> Kerry

>

[Guest guest]

Dear Tracey,

I am so tremendously touched by the gift of you

opening up and sharing such painful issues you face.

It is a rare person who would do that. You have given

me hope. I am very grateful.

I am going to talk to 's dad and share your

email with him if that is okay. I have found a clinic

in Texas that specializes in testing damaged brains -

finding every messed up pathway and then setting out

to fix or cope with the problems.

I think it might be 's salvation and Joe just

doesn't see it. Hearing how difficult an 'easy' chore

can be almost impossible might help him to come

around.

((( Hugs )))

Willow

--- Tracey White <atpeacewithmyself@...> wrote:

> Willow,

>

> You don't say how old your son is, but from all

> you've said, it doesn't

> sound to me as though your son is intentionally not

> taking care of himself.

> It sounds like the brain injury he received from

> being hit on the head and

> from all the subsequent seizures has seriously

> affected his short-term

> memory and his executive function processes. Taken

> from Wikipedia:

> [Executive function] is thought to be involved in

> processes such as

> planning, cognitive flexibility, abstract thinking,

> rule acquisition,

> initiating appropriate actions and inhibiting

> inappropriate actions, and

> selecting relevant sensory information.

>

> For people with these issues, something as seemingly

> simple as taking a

> shower can be a monumental task; one that is both

> mentally and physically

> exhausting. Think of all the things that have to be

> in place to take a

> shower. You have to:

>

> 1. REMEMBER to take a shower (my short-term memory

> is so bad that if the

> phone rings while I'm getting ready to take a

> shower, by the time I'm off

> the phone, I'll have forgotten that I needed to

> shower).

>

> 2. Make sure you have at least one clean towel and

> wash cloth

>

> 3. Make sure aforementioned towel and wash cloth

> make it into the bathroom.

>

> 4. Make sure aforementioned wash cloth makes it into

> the shower.

>

> 5. Make sure aforementioned towel is within reach of

> the shower so you don't

> have to get out of the shower dripping wet in order

> to get the towel.

>

> 6. Make sure you have enough body soap and shampoo.

>

> 7. Remember to wet the wash cloth

>

> 8. Remember to put soap on the wet wash cloth.

>

> 9. Remember to use soapy wash cloth on *all parts*

> of self.

>

> 10. Remember to rinse soap off self.

>

> 11. Remember to rinse soap out of wash cloth

>

> 12. Remember to wet hair before applying shampoo.

>

> 13. Remember to apply shampoo.

>

> 14. Remember to rinse shampoo out of hair.

>

> Now imagine this: You wake up in the morning knowing

> you have to do " x " at

> " x time, " and you have to shower before you leave

> the house. You go to get

> in the shower only to realize there are no towels,

> wash clothes, soap or

> shampoo in the bathroom. You find a towel, only, by

> the time you've found

> one, you've forgotten that you also had to get a

> wash cloth, soap and

> shampoo. You get into the shower and start the

> water, only to realize you

> still don't have a wash cloth, soap, or shampoo. So

> you get out of the

> shower, and dry off. While drying off, you start

> thinking that " DOH! I never

> even got soaped up! " Having completely forgotten

> that you got out of the

> shower because you didn't *have* soap to soap up

> with, you get back in the

> shower to soap up. Only once you've restarted the

> water and are ready to

> soap up do you realize why you got out of the shower

> in the first place - to

> get soap!

>

> You get the idea. Now imagine that this happens with

> *every* item you were

> supposed to bring into the bathroom/shower with you.

> Then, by the time you

> have actually gathered all the things you needed for

> your shower, you've

> turned the water on and off so many times that you

> are now OUT OF HOT WATER!

>

> I'm telling you all of this because I have Been

> There/Done That - more than

> a few times! I, too, have gone up to three weeks

> without a shower. Not out

> of a lack of caring about how I look, but out of the

> feeling of pure

> exhaustion I get just *thinking* about all the

> things I have to remember to

> do/get just to be ready to *get in* the shower. Then

> there is the

> frustration you feel at yourself when you get out of

> the shower only to

> realize you still have soap on your body and/or

> shampoo in your hair. Yep,

> been there, done that, too! Why would anyone

> *willingly* subject themselves

> to that kind of frustration and physical and mental

> exhaustion (it does get

> physically exhausting running around trying to find

> everything you need some

> days) any more than they *absolutely had to*?

>

> Your son probably only showers once a month because

> that's as often as he

> can stand to go through the mental and physical

> exhaustion. He probably

> doesn't realize how bad it is for his body and his

> health to only shower

> once a month. I didn't for a long time. My theory

> was " I don't see any dirt.

> Showering can wait. " Only once I realized that even

> if I *looked* clean, not

> showering after incontinence accidents can cause

> *major* infections, that I

> started to shower more often. Even now, if I haven't

> had any smelly bladder

> or bowel issues, I may only remember to shower once

> a week.

>

> As for brushing his teeth, again, it's a multi-step

> process. Also, does he

> gag easily? Does he seem to be overly sensitive to

> sensory input (sight,

> sound, touch, smell, taste)? If so, he may have

> Sensory Integration

> Disorder. For someone with Sensory Integration

> Disorder, brushing one's

> teeth can be torture because you have to deal with

> trying to brush your

> teeth without triggering your gag reflex and at the

> same time be able to

> tolerate the sight, smell and taste of the

> toothpaste. It's another one of

> those " Why subject myself to it any more than

> absolutely necessary? " Oh, and

> for someone with Sensory Integration Disorder, going

> to the dentist can be

> like entering one of levels of Hell Dante describes

> in " The Inferno, " so we

> tend to avoid that as much as absolutely possible as

> well.

>

> My advice to you would be to sit down with your son

> and first, tell him you

> are worried about his health because showering only

> once a month isn't good

> for your body since it allows bacteria to grow; even

> if you can't see it,

> it's there. Second, help him make a list of all the

> things he needs to

> remember to do in order to successfully complete

> certain tasks. I have my

> whole morning routine mapped out; including all the

> things I need to make

> sure I have for my shower. If a list with words

> doesn't help, help him find

> pictures that he can copy or print or cut out to use

> as visual reminders.

>

> My routine is mapped out as a series of pictures I

> found in one of my

> computer programs. I printed the pictures, got them

> laminated, and put

> Velcro on the back of each picture. Then I took part

> of a manila folder,

> laminated it, and put the other side of the Velcro

> on the folder. At night,

> I make sure all the pictures are attached to the

> manila folder. In the

> morning, as I complete the task represented by a

> picture, I take the picture

> down and put it in an envelope. This allows me to

> *see* what I still need to

> do to get ready for the day.

>

> Willow, I'm sorry this email got so long, but your

> son sounds so much like

> me, I had to respond. The medical profession is just

> now

=== message truncated ===

[Guest guest]

Willow,Please feel free to share my email with your husband, son, your son's doctors, or anyone else you think may be able to help your son. I'm really glad my email gave you some hope that things can get better. My Nonverbal Learning Disability (NLD) wasn't diagnosed until I was 25. By educating myself about its possible symptoms, causes and learning how to use my strengths to accommodate my weaknesses, my satisfaction with life has done a complete 180 turn. -- Tracey White " No day but today. " Born 1/2/1976 with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type IINonverbal Learning Disability, osteopenia, hypothyroidism, osteoarthritis, Sensory Integration Disorder, neurogenic bowel/bladder, possible Autism Spectrum Disorder, no depth-perception or peripheral vision, severe latex allergy

meds: Synthroid, Vitamin C, Vitamin D, Calcium, Macrobid, Nasonex, Tramadol/Vicodin as needed for pain

[Guest guest]

Same goes for me. I have never heard of this non verbal thing. But it makes sense. See? Even an old goat like me can learn something new everyday.

Sue

For a fun time try http://www.peternoone.com.

For The DC5 fans, please check the updates on Mike at

http://www.mikesmith1964.com

Re: About Willow's Son

Willow,Please feel free to share my email with your husband, son, your son's doctors, or anyone else you think may be able to help your son. I'm really glad my email gave you some hope that things can get better. My Nonverbal Learning Disability (NLD) wasn't diagnosed until I was 25. By educating myself about its possible symptoms, causes and learning how to use my strengths to accommodate my weaknesses, my satisfaction with life has done a complete 180 turn. -- Tracey White"No day but today."Born 1/2/1976 with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type IINonverbal Learning Disability, osteopenia, hypothyroidism, osteoarthritis, Sensory Integration Disorder, neurogenic bowel/bladder, possible Autism Spectrum Disorder, no depth-perception or peripheral vision, severe latex allergy meds: Synthroid, Vitamin C, Vitamin D, Calcium, Macrobid, Nasonex, Tramadol/Vicodin as needed for pain

[Guest guest]

Yes, I got some wonderful advice and support from

several people both on the list and written privately.

Words can't express how grateful I am for you all

listening and sharing your experiences with me. You

gave me more ideas when my well had run dry. Thank you

all so much!!!!

; )

Willow

--- angelbear1129@... wrote:

>

>

> Dear Willow,

> I hope your feeling better today... I wish I had

> some answers for you...

> One of our members gave some wonderful insight on

> how to cope for your

> son... Hope it is of some help for you and him...

> ((( BIG BEAR HUGS )))

> Helen