Messages By: sunmoonindian

I too have a developmentaly challenged child.  My son has 6 different issues with his brain one of the major issues being that the right and left brain do not communicate with each other so that when stimuli gets in he can't then get a thought out correctly, thus making thoughts and actions and reactions so confusing for a kid like him.  I was a young teenager who was raped and left to deal with the aftermath of the trauma... He did not do anything wrong so I chose to keep him; (I had also gone through cancer earlier and been told "no kids" after surgery). I worked with professionals and therapists from an early stage with him.  I was even told that he would never make it past 7th grade.  He had speach therapy from preschool to 9th grade 3 times a week in a neighboring town-- I didn't own a car, ( I borrowed one to take him each time).  I finally got a job at the school as a substitute teacher to have the same schedule as the kids' and learned state's standards and what battles he was going to fight.  I watched him go to special ed classes and be teased.  My heart broke for the pain he suffered.  I doled out his medications religiously and always read new material as fast as I could get my hands on it.  No, I could not afford the top doctors but he went to them.  I sold my soul and worked three jobs and took one college credit at a time so he could have the best care.  He has been hospitalized several times over the years and had many setbacks and new diagnosis that has sent panic and fear and frustration in my heart.  But I know that if I don't fight each day to move him forward and keep fighting for him to get the care and education he deserves he will not have a future.  Don't give up on your child by putting away the information as heartbroken as you are!  It may seem as you have failed or you did something but life is a draw; good bad or whatever you have get up each day and put your feet down and keep moving forward- No matter what... Your kids need to see you doing that too.  Once you have that forward momentium you can't stop.  It became such a focus; I had a list each day of what needed to get done for him and now he is 18 years old in a "independent living program" of sorts with a psr worker finishing his high school and will graduate in December.  But none of this was done without a lot of fight on everyone's side!  I was told this summer by one of his case manager's that he is so much "further ahead than most children like him because of everything I have done for him"..... That is probably the highest honor/compliment anyone could ever give to me in my life.  To know that I continued to fight everyone to tell them "no, he will too learn how to do this!" And he eventually did and he is making his own mistakes and coming out to figure out the bumps and learn about his illnesses and figure out just how to navigate his brain.  It is tough as he has not been told that he probably will never have a relationship; we just hope and pray that he will one day catch onto social cues all of this takes time and patience.  But at least we got out there and know we gave it hell trying... That is my honest advice to you... I am only 36 and delivered him when I was 18.  Now he is 18 and a lot of good has come out of my stubborness.  The pain and the depression will always tug at you but once you get at the fight mode to work towards a resolution for you and your families peace it becomes almost contagious and you tend to "shelve" the pain and depression.  It hits you when the struggles are at the worst and you don't think you can go forth; but it is then when you have to remember the bigger picture!  I wish I had had someone tell be many years ago what I was told this summer --- "He wouldn't have been this far ahead if it hadn't been for you and all your hard work;"  I would have not been so angry and frustrated and wallowed in my tears- because I would have known there was a greater reason a bigger "picture" if you will coming out of his struggler and our strife!  We were dirt poor; always broke didn't own a vehicle, had a husband that beat me, (we were a country song!)  and I knew I needed a college education; I majored in neuro pysch.  I needed to know how to help my son!  Today I am writing a book on our struggle and the stigmas these children deal with including the poor healthcare they receive!  Tonight my son called me crying; he is "cycling" (he is manic" and because of his insurance and him not understanding how to just simply go to the pharmacy and pick up his meds; he has been off his meds for over a week.  He is really sick and it will take me at least two weeks to get his brain functioning again and get a clear thought through his again.  He is almost child like tonight and very sad.  He does not understand why his brain betrays him like it does.  He never will and as he grows it will only continue to get worse.  Our hope is for him to understand it and be able to learn to manage the symptoms before he gets this ill.  This is a real burden that mothers like us have to carry.  I used to look out at the stars and when the moon went to sleep at night and cry and ask why????!!!!!!! (Believe me; I understand the need to self medicate- I drank for a time; to try to put away the pain until he almost hurt himself and I was unable to help him. It is not worth it and is a gross waste of time and energy that could be spent on healthy decisions for you and your life.)  But when the smallest achievement is made it is so worth it.  When a hurdle is moved and you realize you can move more, then you gather up your courage and you make your lists for today and tomorrow and you get your strength put together until they can do it for themselves... Believe me it is worth it in the end!  And I can also tell you that my best friend from the fourth grade just had a baby one year ago--- she just called me six months ago with the most devastating news; her son was diagnosed with a terminal disease.  He may have a year if she's lucky, and breathing treatments go well and he responds to meds and he will start growing; maybe two.  We are both starting from the beginning again; care, education, love eachother, love yourself, and fight like hell! Best wishes...