Topic : 08/19 Tired of Being a Mom

This is sad.  The pain deepens when we CHOOSE a child through adoption that "has flaws" that we did not see.  When we give birth to this situation, our body's hormones help us to switch gears.  And automatically there is the help out there.  When an adopted child is dxed with issues, they don't have the parents with undying committment.  It can be learned, so don't think all is a lost cause.  We as  adult humans have learned to adapt very well to our changing world.  We have resources to reach out to, to gain knowledge, simply this website and Dr Phil's show is one committment to that.  The children that are brought from other points of the world came into it without ever expecting anything but nothing.  That is why adoptions happen.  I would not want to the the parent of a child I could not care for, nor one who had to give up my child to someone else to care for UNLESS I knew my child was going to be in a better place and still be loved.  My heart aches for the mother who let her child become adopted by someone else.  This is a maternal heart speaking. 

That aside, don't sit and cry in your cheerios.  Time for you to learn to put yourself last, your child and special needs first.  Whether or not your child was born to you or adopted.  Get the pity party done and get busy.  This is a life long committment.  And we are here to help.

My story is a personal one, making a long story short, my special needs brother was 3 years younger than me.  My mom was told in the hospital by a nurse who came in crying.  There is something wrong with your baby.  And they did not know what.  At 9 days old he was sent by car to Rochester Mayo Clinic to find out answers.  A friend who was an RN went with.  The doctors thought it was a lost cause. This was the beginning of the fight of Alan's life.  As back on those days institutionalized babies, children was the normal. NOT in our family.  Alan came back with no dx.  Flacidity, feeding on a brek bottle due to no sucking ability.  Failure to thrive could have been used.  At age 3 months a TV program talked about cerebral palsy.  AHA!  Symptoms that described my brother!  The Sister Kenny Institute in Minneapolis had a pilot clinic in Aberdeen SD.  They got Alan to that.  Remember, this was back when no benefits, no holiday pay, thin paychecks were the norm.  Families got you through.  For the first 13 years of Alan's life, he had the dx of CP.  WOW!  All of us kids did his PT, OT, feeding, changing, all to help our parents.  Grandparents staying for days on end to help (2 bedroom house, 7 family members), all sorts of people coming, calling, helping.  His public school education stopped at 1st grade, he was able to go 12 miles from home to a special needs school.  Eventually the school district developed the best special ed dept in SD.  No more daily driving anywhere!  Alan could read, write, etc anything the rest of us could.  We did not allow him to be as special as he started life out.  He was one of us. 

Age 16. it was time to find a sheltered workshop and school with training.  It broke our hearts to have him hundreds of miles away BUT he loved it.  He lived in foster homes, had foster famlies. Had responsibilites and knew he was loved.  By age 13, Alan was redxed as Prader Willi Syndrome--the eating disease with mild retardation.  The PW and CP are identical in early years.  PW has the increase of weight, eating, etc. A whole new story in itself.  As time went on he lived in many different states and schools.  Finally we got him moved to Willmar MN (10 years ago) with a program that got him is own house, his own job, his own bills, his own housemates, his own friends, church.  Arriving on the "practically normal" front also came other issues, such as puberty in his 30s-40s.  So that got changed too. 

Finally, my brother was as independent as he was going to be. He loved it.  WE loved it.  Networking gets you to these places.  Yes, there were days you wondered where you were going,  NEVER I wish he were not born.  NEVER, NEVER NEVER. 

Having his diet controlled by carb counting in a diabetic diet made so much sense.  It was the first diet that worked.  Last June Alan was feeling cold, crabby, and so we felt maybe he needed more carbs.  His house mom took him to the doctor, did some labs, which led to an CT, which led to a family meeting.  This child, our brother, had cancer!  Not 1 place, but 4 different kinds/places.  He was cared for, saw doctors, had a plan, etc.  This was something we did not see coming, EVER!  How do you take care of this now?  How do you make it worK?  How can you make it go away? 

Alan's words in the doctor's office made the choice difficult, yet we understood.  His voice, the Lord's words,  I do not want anything done, I do not want to be sick, I do not want medicines.  Leave me alone, please.  The doctor felt he understood (here is a person who had guardianship from the day he was born, we did the best 100% of the time) and we needed to follow Alan's request.  Do nothing.  Knowing what we know in our society of fix everything, it was very difficult to accept doing nothing.  But the Lord got us through.

We entered him into hospice immediately to help his house staff with what needs we could.  He also requested NO HOSPITAL, I want to live in my house.  We lived every day with him to the fullest. With many friends, family, pastors, there was always someone filling his day.  His normal schedule continued, if he felt tired, he would adjust it.

His main concern was his birthday in February 2008 he would be 50.  He wanted to be 50 like his 3 sisters.  That meant he got old.  So in August 2007, (49 1/2 yrs old) we had a 50th birthday party for him, he loved it, people came from all over to celebrate it. It was his birthday, our last time before his funeral to celebrate his life.   2 weeks later we had his funeral.  And we celebrated it the way Alan would have wanted his party to have been, balloons, tears, stories, love shared.  7 weeks was such a long time for him, a split second for us.

So please, there is help for those in need.  Don't give up.  Just cause today may be a 'bad' one, the future may be full of rainbows and balloons. 

(In Feb 2008, on his birthday, I made his favorite cinnamon rolls, poured up 2 gobletsof sparkling cider, toasted him with love, and blew out his candles, said I loved him forever and said it was time to go to bed.)

From Alan's loving sister, Joyce

Here it's very well know that older children adopted from orphanages in the former Soviet territories have a lot of physical and emotional problems.

This is no place to go into all the reasons why, but aren't people in the USA aware of this?

Don't they know that if they adopt these children it is a wonderful thing, but it is also a difficult lifetime commitment. We are talking about a child. Not a puppy that came be returned to the pet store.

Why do people in the media (Dr Phil, local and national news) always state that the person "Suffers from"--Down syndrome (or other disability)?????

This  ruffles my feathers to no end.

As a mother of a daughter who has Down syndrome (she is 21)--I cannot imagine a person LESS 'suffering' than my daughter.  I have honestly not met any person with Down syndrome who seems to be 'suffering'.  And, I have yet to meet a family or person who says their child suffers as a result of Down syndrome.

Yes, they do have a developmental disability.  Do they suffer???  Hmmm....I don't think so.

It think it's time the media (and yes, you too Dr Phil)--threw out this old notion that people with disabilities  are 'suffering',  as if they are in pain or distress.

Just my .02.

Thanks--Peggy