Topic : 08/19 Tired of Being a Mom

Lolosmama, I couldn't have said it better myself. I said in another post, parents are calling people like us insensitive, because we're not being sensitive to their desires. About the person who asked if people like us feel better calling parents names. We don't do it cause it makes us feel better.

If we were like these parents, and only cared about ourselves. We'd not be here posting on behalf of the children. Do you think we enjoy hearing "Your not a parent so I don't have to listen to you! Nani nani boo boo!" type of comments? When you encourage parents to feel they're valid in thinking of only themselves first, then you're dooming their kids to a life of neglect. If you're not into being a parent 100%, then you shouldn't be a parent. I mean, seriously Lolosmama, I think I care more about my cats than some of these people care about their children.

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

If you are posting on behalf of the children, then you would be sympathetic to the moms.  Parents have to think about their own feelings and keep them in check in order to be good parents.  If their feelings are depression and resentment, then they need help, or they won't BE ABLE to take care of their kids.  Parents are also people, complex, multidimensional people who get overwhelmed.  You're not a parent 100% of the time, parents have jobs,  parents have hobbies, give back to the community, etc., it's one of many aspects of who you are.

I don't get why people would be saying that if you take advantage of resources, then you're a horrible/weak parent, BS, BS, BS.   You work smart, not hard (or not just hard, anyway).  If I can get similar if not better results using resources and not driving myself crazy than I can working myself to death, I'm going to do the former and be more efficient.  If people don't think they need, that, it's their business. 

If you really are on here posting on behalf of the children, then make suggestions that would help them instead of telling them that their kids should be taken away, etc that makes it far worse.  Are we supposed to reiterate that they're "weak and stupid"? Does that magically turn them into mothers of the year?  If I were Cyndi, I'd say "Kiss my fat a@@" to all the negative people.  What reason does she have to listen to all the negative criticism when 9 times out of 10, it's unconstructive crap to begin with? 

I do hope that this topic is taken seriously in future shows. I am raising my younger sister's daughter, now 7, who lost her mom to leukemia before she was 2. Prior to that loss of her mom, this poor child (and her older 1/2 siblings) were severely neglected. We strongly suspect in utero drug and alcohol exposure, and based on her physical condition when she came to live with us, she was severely emotionally & physically neglected by a laundry list of caregivers (and I use that term loosely!). When she came to us just before 2, she barely spoke, had terrible rages and many food and elimination issues. We corrected most of those, but her behaviors have gotten progressively worse to the point where, at 7, we are very worried about what she will be capable of as a teen and young adult. We have experienced (and are still) lying, sneaking, stealing, cruelty to animals, willful destruction of others property, lack of remorse, lack of conscience, inability to predict consequences, food hoarding, refusal to follow rules, violence against my own children, inability to show affection, the list goes on....  I had been hoping for Dr. Phil to do a REAL in-depth show on R.A.D., or similar, but it seems that this show dealt more with parental frustrations than the actual issues of the disturbed children and how to get help for them. I have spent hours and days trying to get help for this young child. My hope is that, through early intervention, we can save her from going down a terrible path.

For those not dealing with this disorder, you simply have no idea what this is like. In the public eye, my little one is very charming and personable. She will melt and then steal your heart in the blink of an eye. She seems to have my sister's gift of having people drawn to her instantly. Then behind closed doors, I have a child that must be watched constantly. If left alone, sometimes even for an instant, she will do something mean and destructive, injure a family pet, steal something left within reach, and then lie about it to your face. The roller coaster is unimaginable. Just when you think that maybe she has turned a corner and is making progress, then - SLAM - you get hit with something new that she has done. This behavior is just starting to manifest at school as well. It has taken me two years to get her into the proper counseling, (it took three tries), thankfully covered by insurance, and we are now looking into the possibility of in utero brain and developmental injuries with a Clinical Neuropsychologist. I am hopeful, but if I had not been such a bulldog about seeking help for her behaviors, all of these things would have been overlooked and we would probably eventually find her in the juvenile justice system, or worse.

We are fortunate (if you can call it that) by having some idea of her early years, no matter how rough. While her behaviors are tough on our family, they are by NO MEANS the worst that can be. In support boards, I hear of far worse, so while our situation is tough, they are those that are tougher! The best I can offer, being the in midst of this battle, is to keep fighting for help for these kids. The disorder and the problems are very real. Love simply is NOT enough to overcome the physical and psychological obstacles that these kids are given. It takes lots and lots of hard and diligent work on the part of the responsible adults. If you have one of these kids, or know someone who does, encourage them to seek respite care when possible because the battle CAN be exhausting. You must keep looking for help and answers, don't simply take a "no" from insurance, because I don't believe that they truly want to unleash broken people into the world. I had to ask for higher levels of review to have my daughter's problems given the attention that she needs, but once they understood, they are pretty helpful. At least so far.

We have not solved her issues, but we are working on it. Yes, it does get frustrating! It also gets lonely, because, if friends DO believe you, they avoid you to stay away from the problems of the child, and if they DON't believe you, they avoid you because they think that YOU are nuts! It's a no-win. Find support groups. Fight for help. And if you know someone with a child like this, don't be too quick to judge them, you simply have no idea what it is like!

Lorraine in WA State