Chivalry still lives.

I was reminded today by one of the house moms at Erik's group home how much Erik blesses others by being polite, especially to the ladies.   House mom Barbara told me that Erik watches for her to arrive at the home every morning just so he can jump up and hold the door open for her.  So sweet.  Isn't she blessed?  It reminds me of the countless times Erik has done that for me and every other lady he's around.   Many times over the years when we were about to dish up our food or go into a building Erik would say, "Yadies first" (L sounds were hard for him).  He would extend his arm and smile, urging the ladies to proceed as if he had all the time in the world and wanted you to feel special.  He's a gentleman and enjoys being one, even today with his faculties fading.  That just makes me happy.

Best laid plans

     It's that time of year again, when our family plans Erik's holiday visits. His group home closes during the holidays so we go get him and bring him to family -- in either Dallas or Houston. This year our family in Dallas will have Erik's company at Thanksgiving and my sister and brother in Houston will have him at Christmas.  Erik's already looking forward to it, he loves holiday time.   
     Last year the holidays were a blur, a very crazy blur. Erik was in Dallas for Thanksgiving. We had a wonderful Thanksgiving meal at our Dad's. Erik hung out with us all but I noticed that he wasn't glued to the Dallas Cowboy game as in the past. I'm sad he can't follow the game like he used to. He was very quiet and detached.
     And then Christmas came around and we were planning to take Erik with us to San Antonio to spend the holiday with my husband's family.  Erik had never been there so I was a little concerned the unfamiliarity of the surroundings might be hard for him but everyone in the family assured me they'd help him feel welcome and ok.  During the nights, Mike and I were going to stay with Erik at a hotel near my in-laws.  We had it all worked out.  Then, the day before we were to leave for San Antonio, our son came down with a really bad stomach bug, really bad. (earlier that day he had gone to a cajun place and eaten alligator. Yep he really did. We later discovered it wasn't that that caused his bug. But he learned that he'll never eat it again)  We were up with him most of the night. Erik was sleeping in our son's room on a mattress on the floor so we put our miserable, sick son in our daughter's room, and the rest of us played musical beds so, hopefully, no one else would get sick.  Ugh, please, no one else get sick.  We (I) do not do well with digestive issues.   
     So, we were wondering if we should even go on our trip.  Then my dad and stepmom did a wonderful thing.  After hearing what we were going through, they said they would come pick up Erik, keep him with them and take him back to the group home after Christmas. Wow.  I will forever be grateful to them for volunteering to do that. 
     We did make it to San Antonio and we made it to the Christmas Eve service.  After a while our son started to feel more like himself and then...our daughter caught a respiratory cold that wiped her out, and then... in the wee hours of Christmas Eve my husband came down with the symptoms of that horrible stomach bug, and it attacked with a vengeance.   If we had had Erik with us in our hotel room that night and all the following day I don't know what we'd have done.  If Erik had caught that bug...I shudder to think. It was a divine provision that he was back in Dallas.  My hubby and I spent all of Christmas Day in that hotel room, trying to make it through the day.  I didn't catch the bug (thank you, Lord) and when we finally all got together again at my in-law's house we were a very bedraggled bunch.   Christmas Day in hotels is very lonely and quiet, especially when family and festivity is 10 minutes away.   
     I'm learning to accept what the Lord brings. We make our plans but ultimately His purpose prevails. Aren't there 2 verses in Proverbs about that very thing?  Yes, Proverbs 16:9 and 19:21. He's in control.  When I trust Him things work out better.  So, I'm already telling Him I'm trusting what he brings this holiday season.  I'm trusting that Erik will have a good time.  
     And I would love to have holidays with NO you-know-what.

Hi again, friends.  I'm still here.  I know, it's been a while since I've

posted anything.   Everything's fine and Erik's fine.  I've just been 

wondering what to include on this blog that I haven't already written.

I've kind of run out of "Erik stories" ... for now.   

Then today I saw this article so beautifully expressed by Amy Julia 

Becker, mom of a 5 yr-old daughter w/ Ds.  I love her description 

of recounting the stories of her children's birth, and deciding to tell

Penny more about the day she came into her life.    

She is 'right on' in her view of the cultural attitudes associated with families

like hers. She asks the hard questions:  Is a life with Down syndrome a life

worth living?  Is the burden such a life places on a family and society

too great?

Honest and inspiring, so I share it with you.

October 3, 2011, 1:10 PM

Has Down Syndrome Hurt Us?

By LISA BELKIN

Of the growing genre of eloquent parents describing what it takes to raise a child with a disability, Amy Julia Becker is one of the best. She has writtenoften for Motherlode, about how Down Syndrome means life for Penny is different, and exactly the same.

She recently published a memoir of her family’s tale, called “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.” To commemorate the moment I asked her to write here for me one last time, about the question every parent asks in one form or an other at the start of the journey.

HAS DOWN SYNDROME HURT US?
By Amy Julia Becker

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”

Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”

She cocked her head to the side. “Why you were scared, Mom?”

“I was scared because I thought Down syndrome would hurt you,” I said. I paused, knowing I had only told part of the truth. “And because I thought it would hurt me.”

“Oh.” Penny blinked her eyes the way she does when she’s thinking hard about something.

My thoughts moved back to the wave of fear and sadness and anger that had engulfed me in the hospital, the darkness that lifted only when Penny was in my arms, when I stopped worrying about the years ahead and instead gazed at her pudgy round cheeks and waited for her deep blue eyes to flicker open and believed for just a moment that everything would be O.K.

And, five years later, everything is O.K. My fears about Penny’s condition were largely unfounded. She hasn’t suffered major health complications and it has not been difficult to love her. I can even say that I’m grateful to have a child with Down syndrome because through her I have learned to value more of my fellow human beings than I might have if I had given birth only to “typical” children.

But I haven’t told Penny that the general cultural perception of Down syndrome continues to hurt us all. The hurt comes in two forms. One, the well-meaning but simplistic pronouncement that people with Down syndrome are “sweet and loving angels.” This attitude dehumanizes individuals with Down syndrome by assuming they can’t and don’t experience the full range of human emotions and needs. A similar hurt comes in the statement I heard all too often when Penny was first born, “God only gives very special parents such special children.” Down syndrome became a litmus test for my parenting skills, but I was well aware that I didn’t know anything more or have any greater capacity to love my child than the woman who gave birth in the room next to mine.

The other way that cultural attitudes toward Down syndrome hurt us is through the assumption that individuals with Down syndrome and their families would be better off not living at all. At this moment, most women who give birth to a child with Down syndrome do not know about their child’s extra chromosome until he or she is born. Only 2 percent of all women seek a definitive diagnosis of Down syndrome or other chromosomal abnormalities through amniocentesis or chorionic villa sampling during pregnancy. But of the women who receive that definitive diagnosis, the vast majority (90 percent) choose to terminate their pregnancies.

Recent advances in prenatal testing include a non-invasive blood test for all pregnant women with 98 percent accuracy in diagnosing Down syndrome in the ninth week of pregnancy. It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great.

Penny starts kindergarten this fall. She will be learning to read and play and paint and use the computer and express her feelings alongside her typically developing peers. She will help me out around the house by “folding” laundry, by setting the table, by making her little sister giggle as I prepare a meal. She’ll frustrate me when she refuses to go to the potty by herself or when she yells at William or when she whines about not getting her way. We’ll snuggle on the couch and she’ll sound out words on flashcards, with a flush of excitement rising to her cheeks when she figures one out and says, “I can do this, Mom!”

In that moment a few months back, when I finally added Down syndrome to Penny’s birth story, I took her chin in my hand so I could look into her eyes, now a sparkling green with a dark blue outline. I said, “But Down syndrome didn’t hurt you. And it didn’t hurt us. So we didn’t need to be scared anymore.”

“So then you were happy?”

I reached out my arms and gave her a big hug. “I couldn’t be more happy that you are my daughter.”

Down Syndrome fact or fiction?

Several months ago I came across a few "myths" related to Down syndrome.   I thought I'd weigh in.

1.  Fact:  Children with Down syndrome are only born to older parents?    This was not true in my parent's case as Erik was the first of 4 children and they were very young when he was born in 1960.  I know many cases where parents who were in their 20's and 30's have had children born with Downs.

Fiction: 80% of children with Down syndrome are born to women younger than 35. However, the likelihood of having a child with Down syndrome does increase with the age of the mother.

2.  Fact:  Children with Down syndrome are always happy?  Erik was a very happy baby, my mother says, and for the most part he remained a happy person.  But he had his bad days too like all of us.

Fiction: People with Down syndrome have the same feelings and moods as everyone else.

3.  Fact:  People with Down syndrome cannot form relationships?  Erik was more than able to make friends and enjoy people.  He loved people from the moment he met them and wanted to spend time with them.   He was always inviting people he had just met to his condo to watch football and have a coke.   Today he shakes hands with everyone he meets and is a sociable guy despite his aging mind and body.

Fiction: People with Down syndrome are perfectly capable of forming all types of relationships with people they encounter in their lives, be it friendship, love or dislike.

4.  Fact:  People with Down syndrome cannot have children?  Don't know much about this subject, I have to admit.  Our family never considered Erik having a relationship involving marriage or anything along those lines.  But he definitely had a capacity to love.

Fiction: Women with Down syndrome can and have had children. It has been recorded that two men with Down syndrome have become fathers. The information about fertility in people with Down syndrome is very outdated and based on research in institutions where men and women with intellectual disabilities were kept apart.

5.  Fact:  All people with Down syndrome will eventually develop Alzheimer’s disease (dementia)?  This fact has proven true with our sweet Erik.   He is 51 now but probably operates like someone 20+ years older.   His body and mind has now aged beyond our parents.  I confess I often wonder what the near future holds for him.  This promotes gratitude for the simple things, which is always good.  Like hearing his voice on the phone or seeing him smile and laugh real hard about something.

Fiction: Although many people with Down syndrome do develop dementia in their later years, this is by no means inevitable. Research indicates that the incidence of dementia in people with Down syndrome is similar to that of the general population only that it occurs 20-30 years earlier.

****************************

When Erik was born in the 60's medical care and knowledge about this handicap was so far behind our present day.  Erik's life is such a success story.  Those who have babies with Downs now will have the benefit of advanced care and tons more support from online communities and educators.  I anticipate we'll see those with Down syndrome accomplish things we never could never imagine.  One thing for sure, they forever influence those with whom they share their lives.


here read about Erik's influence on others.
here read about Erik's job at the hospital.

Sweet welcome for Erik

 Erik's smile and sweetness blesses everyone.

As I mentioned before, a few weeks ago Erik visited our house for the weekend.   Originally, he was going to return to his group home on Monday.  But due to a sudden death in my husband's family we had to change our plans; so our son and daughter ended up driving Erik back to Brownwood on Sunday evening.  Erik enjoyed being at our house but it was clear to us that he was happy to be returning to his friends.

Before his visit I had come across some old photos of Erik with friends and an awesome one with Erik dressed as Elvis receiving 1st prize at a talent show.  My daughter said he looked at those pictures over and over on the way home.  Maybe they triggered some memories for him.

When they pulled into Aldersgate Enrichment Center.  Erik, all of a sudden, was a man on a mission.   He didn't want to even take his stuff to his room, he wanted to put it down inside the door and go.   My kids persuaded him to at least take his things to his room which he grudgingly did but... after that, he charged out of the house, right over to the other group home where he knew things were happening!   He walked in, threw his hands up in the air with a huge smile - and, oh my goodness, I know if he could have he would have yelled out "Hey! Here I am!!!"

The response he got was "Erik!! you're back! we missed you, come have an ICE CREAM FLOAT!!!!"   His friends immediately started joking with him, poking each other.   They have lots of inside jokes there.  They talked about how Erik likes to "put people in jail."  He holds the door handle so they can't leave their room, all the time smiling and laughing.  (hmm, now I know why he tried to do that to my husband Saturday night.)  Penny started asking Erik,  "Erik, how many girlfriends do you have?"  Erik held up 2 fingers.  Penny is one of those 2.

Pat, who I've mentioned before in this post, told our kids he didn't know Erik would be gone that weekend and was worried about him.  Pat has become such a treasure to Erik, as are all the house moms and dads.  He helps him shave (yay!) and works with him to help him talk more.  Pat says to him "You know, if you're gonna be my friend, you've got to talk."  He is so patient with Erik because sometimes he can only get out one or two words.   Pat also remarked again about Erik's legendary appetite. (we are not surprised)  Pat said one time they were all in a restaurant and one of the residents went to the restroom and while he was in there Pat saw Erik take his plate and finish it off, then finish off his own steak, then have dessert!  He's just an eating MA-chine leaving people shaking their head in amazement.

Pat also shared how Erik gets to sing on Sunday at church.  Erik tried to tell us about that but he couldn't get out anything other than "I-I-I sing".  But from what Pat said it sounds like Erik goes up to the front during worship time and sings most Sundays. I would love to see this. Pat says it's such a beautiful sight he often finds himself crying.

What a heartwarming return for Erik!  My heart swells in gratitude that he lives in such a loving place.   In case you're interested, here's a link to the group home where Erik lives and works in the Packaging Department. (you can see his picture on that link)  I've said it before and I'll say it again, those with mental challenges often excel in loving others and that's clear in this unique community at Aldersgate.

Erik's visit -- singing, swimming, laughing

Well, Erik visited last weekend and I'm pleased to say everything went pretty well.  My son and I picked him up in Brownwood and as soon as he got into the car he started smiling from ear to ear.    He settled in for the 3 hr trip.  We put some music on and he sang, clapped, tapped his hand on his legs ...  and pointed (the cute thing he likes to do when he sings - like he's an entertainer pointing toward his audience).

Smilin' and singin'

 On the trip home while driving through a small town I saw a billboard for Altzheimer's awareness.  There was a picture of an elderly person on the billboard with these words:  

 I know what I want to say but just can't find the words to say it.  

That's sums up Erik's world, he tries to get the words out and sometimes succeeds, even if it's just one word.  Most times he tries and gives up but we tell him it's ok.

Erik adjusted well to our new house.  We were able to get him in the pool and he ended up really loving it.  We had such fun with him there.  I'm so grateful.  We had family and friends over to see him and that made it even better.

keepin' cool.

Erik laughed, kidded and, of course, enjoyed his meals.   Oh, it was great to see him throw his head back and laugh real hard.

He did the same old "Erik" things, wanted to show off his watch and the contents of his wallet numerous times.   He kept talking about singing so we put on some hymns and Erik sang along.  He sang with such sincerity and tears in his eyes, it really was a "holy moment".   You know it's interesting, he doesn't have the same hesitation singing that he has with speaking.

What's in your wallet?  Erik will be happy to show you what's in his.

I learned some things while Erik was here.  

1.  Don't ask him to make a decision or to choose.  Just make it for him.  Too many choices - his brain can't process them.

2.  It's going to take a while for him to do personal things - longer than usual.  My husband helped him shave, brush his teeth, and get dressed.

3.  It's a really good thing he agreed to wear disposable underwear at night.

4.  Erik doesn't sleep through the night anymore.

5.  Adjusting to change isn't as easy as it used to be.
I would guess that most of these are normal old-age related issues, right?

6.  And last, but not least, Erik loves his group home.  He mentioned some of his friends there the 2nd day he was here.  I asked if he missed them and nodded.  As much as he loved being with us in his old hometown, he loved returning to his friends. (more about that in a future post)  That fact gives me such comfort.   Being a long-distance care-er is hard enough but knowing he's so happy where he lives is a blessing to his family.

I guess all who see a loved-one lose their mental abilities through Altzheimers grieve at the loss of communication.  We're grateful that he's not belligerent, angry or hard to be around.  But we miss the old Erik who could converse in depth, tease even more, and tell you ALL you needed to know about the TV schedule or the bus route or the weather report -- areas in which he was the expert.

If any readers are experiencing life with an aging Down syndrome adult I'd love to hear about your experience.  I hope your summer is going great.

visit this weekend from Erik

Hi everyone.   
Guess what.  We're having Erik visit us this weekend!  Erik's summer visits have a slow pace.  Everything slows down when Erik is here, which is ok.
The last few times he visited his physical needs were confusing. His nighttime schedule was also confusing.   I'm getting better at not worrying about the little things.  things like:  will he be ok at night?   will he find the bathroom? still need to buy night-lights. Last time he was here we asked him to wear incontinence underwear and he agreed.  I'm hoping he will again.
We know to expect flexibility on our part only because Erik's age makes it so.   When I called his group home recently to see how he was doing I was told he's been "agitated".   One night last week he barged out of his room over to the other group home in anger.  They couldn't figure out why.  It's hard for me to not know what he was upset about.  God knows and he loves him.
This weekend my hope is to see if we can get him laughing, really laughing, play music he'll sing along with, take care of any grooming needs, and pour out lots of love on him.  
It's hot as it can be here in Texas, and doing anything outside is torturous.  however....  Erik loves to swim (and, of course, eat) so hopefully our pool will be just the ticket. 

a brother's tribute (Part 5)

(part 5 -- story of Pat Kidd)


Once when he and my parents were headed west across the mountains in New Mexico, I think it was, Pat began to have difficulties, maybe discomfort in his ears from changes in pressure -  I don't know exactly.  Things got so bad, the family turned back and went home.  Another time we were all vacationing in northern Wisconsin, about to take the ferry from Bayfield to Madeline Island in Lake Superior.  We had two cars.  Susan's mother was riding with Susan and Sarah and me; Pat and Daddy and Mama were in the other car.  We had gotten our tickets and were lined up, waiting to drive onto the boat.  It would be fun for everyone - or so I had thought.  We were just talking and waiting when Pat silently got out of the car and walked to a nearby bench and sat down.  I didn't think anything of it at first, but it turned out that Pat had decided he would not get on that ferry.  It seems that a previous experience on a boat had made him fearful.  We went over to the bench to try to persuade Pat.   Sarah, and I tried being nice, and then we tried being ugly.  Nothing worked.  Pat was an adult now, too big to make do something like that.  So Pat and my parents stayed on the mainland that day.  After sightseeing on the island, the rest of us returned to the hotel, where we found that Pat and our parents were just then getting back too - and Pat was using a walker.  Early in the day he had tripped and hurt his knee, and I think constipation was a factor as well.  Constipation was a lifelong concern with Pat.  Anyhow that was the end of that vacation.


It took Pat a long time to recover from any injury.  Many years ago, when he hit his knee on a church pew here, it seemed to take him forever to get over it.  Last September 10, I think it was, he tripped on a bedspread at home and broke his right kneecap.  "Not my fault," Pat said.  After much tribulation at home and at the hospital, Pat underwent surgery to repair the kneecap, and then after a few days in the hospital went into a nursing home for a couple of weeks of therapy.  My dad spent every night with Pat.  Then at home Pat continued to undergo therapy twice a week, but it was a struggle for everyone because Pat was afraid it was going to hurt, and it probably did.  Thanksgiving came, and Pat made it to the family reunion - in a wheelchair.  Exactly a week later, Pat had a seizure at home, and that was the beginning of the end of his life in this world.  He was terrified of the hospital and all the testing that hospitals do.  He didn't want to be touched.  He seemed to have pneumonia or something wrong with his lung; perhaps he had aspirated during the seizure.  The five days at Harris Hospital were miserable for Pat and his parents.  Pat was crying out and belligerently resisting - he was not himself.  He did not want to be messed with; he wanted to be left alone.  He was having trouble breathing, he was not eating, and he had a blister on one of his heels from lying in bed on his back.


I did a computer search on the words "Down Syndrome life expectancy" and learned that at age 50, Pat was already old for a person with Down Syndrome. I read that people with Down Syndrome develop Alzheimer's Disease if they live long enough, and that "late onset epilepsy" is also common.  It became clear that Pat's time on earth was running out, that his quality time was over, and that the best approach would be simply to make him as comfortable as possible.  The transfer to Vitas Hospice at Baylor All Saints Medical Center brought immediate relief to Pat and his parents and everyone else who was aware of his struggle.


After Pat had his seizure and was so agitated in the hospital, I really didn't know how to pray except for peace and for God to work out the best for Pat and for the rest of us.  I know that many of you were praying, as well as my congregation in Dakota, and others.  I give thanks that God answered our prayers, and I trust that God has provided for my brother, Pat, and that he will provide for us all, always.


Many things we cannot explain - why things happen the way they do - why Pat was the way he was.  Things would have been different if he had been so-called normal.  My life would have been different. Would it have been better?  I don't think so.  I would not wish Down Syndrome on anyone, and yet I give thanks for my brother Pat as he was; I am grateful to have had him as a brother, and I know that all of you have been blessed as well.  You know, life is given. Our genetic makeup is give, our circumstances are given.  Our spiritual gifts are just that: gifts from God.  Paul wrote the church at Corinth, "What have you that you did not receive?  If then you received it, why do you boast as if it were not a gift?"  Today we give thanks to God for the gift of Pat, who had a way of humbling us and grounding us in the things that really matter:  hope and love and simple, childlike faith.  We give thanks that Pat was who he was and that we are who we are, even as we pray for the way that we shall be some day in Jesus name.   Amen.
(used by permission)


I agree, Amen.

a brother's tribute (Part 4)

(Part 4 -- story of Pat Kidd)


We had to keep an eye on Pat, especially when he was younger, because he might walk away from our house.  He might hear a dog barking and go to pet it.  He would just wander away, and I remember a couple of occasions on Volder when he did, and there was much anxiety on the parent's part.  One time they found him at a police station, where he was happily drinking a Dr. Pepper with the officers, and not at all concerned about the commotion he had caused.  Another time the whole neighborhood was out looking for him and it was getting toward evening when somebody found him and brought him back.  Years later, Pat went through a period of wanting to be more independent, but he was always vulnerable and pretty much defenseless.  There were facilities that could have accommodated Pat, but no one in the family really wanted to place him in one, as long as he was happy at home.  At the workshop where Pat was employed for a time, some of the people were loud and foul-mouthed, and Pat would get physically sick in order to avoid going to work, so that was the end of the workshop.  Pat liked to say that he was "retired".


All through his life he loved music, primarily the religious and classical kinds that Mama loves, and I do too.  Pat wold sit near the stereo in the living room listening to a record, looking at the cover, and humming along especially with the bass part.  He would get agitated when the volume increased, and when the record ended he'd turn the stereo off.  "Just turn it off."  Pat loved music, but he didn't like loud music; he feared sudden noises.  Once when I took him to the circus, I don't think he liked any of it, but when the high-wire motorcycle act filled the coliseum with the roar of a revving engine, Pat just got beside himself, and so we left.


Most of the time Pat would go along.  He enjoyed going on trips and would ask, "Where are we?" or "How many miles?"  Sometimes he would ask Daddy, "What sign say?" and Daddy might say, "No Passing," and then a little later Pat would ask, "Sign say?" and Daddy would say, "Pass With Care."  This back-and-forth went on for maybe 30 miles one day when we were on the road home to Dakota, Illinois, from Galena.  As I say, Pat was usually cooperative.  He desired peace in the family, and he would apologize in order to make things right again.   Last January, when we were in Ft. Worth, Pat and I went walking on the south side of town, and then I drove us downtown to the train station, and I wanted to go inside and take a look.  Thirty years ago Pat would have gone with me, but this time he refused to get out of the car, I think because of all the traffic and train noise, as well as the fear of the unfamiliar.  Pat was becoming more cautious.  I didn't want to leave him in the car by himself, and he steadfastly refused to go with me, so I just gave in, I got back into the car and headed home without a word.  After we got home, I was kind of pouting in the living room, and Pat began to make amends:  "I sorry, Tim," he said.  Of course then everybody else perked up and had to find out what Pat was sorry about.  He said, "Train station."  So I had to explain in sentences what happened.  Pat never was too proud to apologize, nor did he ever hold a grudge or seek an apology from anyone else.


He enjoyed a wide range of foods but needed help in cutting his meat and was sometimes mighty frustrated by a multi-layered sandwich that would fall apart on the way to his mouth.  He did get frustrated and sometimes angry, especially when he was tired or hungry.  Pat's basic needs had to be met.  Mama laundered his clothes, and Pat usually got some help getting dressed.  He showered with Daddy, and he brushed his own teeth, squeezing out a huge amount of toothpaste and chewing on the brush. We tried to get him to use less and to avoid swallowing the toothpaste, but Pat would often agree with you and then proceed to do whatever he pleased.