I'm still reading Ashley Bristowe's book "My Own Blood".  She took her son and family to the Institutes for the Achievement of Human Potential in Pennsylvania and went through the course there, an intensive two week course that taught them how to help their son learn.  I vaguely recall hearing about this Institute when Katie was little but couldn't do the work.  I know my limits and I couldn't have done what the Institute requires which involves a lot of volunteers to run the program, diet changes and neverending work.  I admire people who are able to do this but I couldn't do it.

Ashley talks about how difficult it was to ask for help and how little her family helped her, not her husband, but parents and siblings.  It reminded me of how little help I recieved from my family with Katie.  My mum was fantastic but she was also sixty-eight when Katie was born and lived two hours away.  

Mum had a terrible time accepting Katie's diagnosis and now I get why.  She felt grief for her daughter and for her granddaughter.  Grief squared.  But that didn't stop her from giving me practical help like child care and doing the laundry and playing games with my other two children.  

My husband was a pilot and an alcoholic so he was often absent.  He was a good dad to Katie and more patient with her than I was, he was just gone a lot.

My two sisters never once offered to care for Katie, not even to take her for a walk to the park.  My husband's sister offered to take care of Katie once while Katie napped and then walked out of the house to go shopping, completely oblivious.  My brother had small children.  My dad didn't know what to do with Katie.  My family didn't know what to do with Katie so she was ignored as much as possible.  I never did have a lot of friends and the ones I had were all busy with their own lives. There was no help.

I was also the only caregiver for my parents who lived 150 kms away.  My dad died when Katie was seven years old but the last two years of his life were awful with frequent hospitilizations and increasing confusion caused by his failing liver.  We made frequent trips to Red Deer.  During the last nine weeks of his life I packed up my youngest two and made the drive to Red Deer twice a week to do what I could for mum.  My siblings didn't show up.  

It was the same when my mum's condition worsened and required more care.  My brother showed up for a few days but my sisters didn't.  When I did ask for help they had a family meeting and decided mum should go into a nursing home, a decision which was communicated to my mum by my oldest sister and which broke mum's heart.  Mum died six days later and that decision caused a rift in my family which is only now, eight years later, slowly starting to heal.

All of this was going on, including caring for my other two children, a son disappearing into a life of drugs and a daughter caught in the middle who acted out by drinking, while trying to raise Katie.  I did manage to learn sign language and gave her a language to communicate with but even that was a struggle.  The school board resisted teaching Katie sign language because it made life more difficult for them.  Katie still learned;  she's bilingual, her receptive language is English and her espressive language is ASL.  She continues to learn new signs to this day uses them constantly.  She also has perseveration which can be tiring and is a symptom of a brain injury.

The book reminds me of how lonely I was for so many years.  My best friend was my next door neighbor and we talked daily.  She kept me sane but she had three little girls and Katie scared them because was unpredictable, aggressive and pulled hair a lot.  I think most of my friends felt nervous around Katie because of her unpredictability.  You had to be on your guard all of the time.

 

Katie having a meltdown before the school bus arrived.

I'm enjoying this book but it's also dredging up a lot of memories and pain for me.  I'm thankful Katie is now happy and well cared for in a wonderful group home by women who love her.  I'm also thankful that I am not her primary caregiver anymore.  I love her more than you can know but she's hard too.