Second Annual “Blogging for TSC Awareness Month” Day 32

by guest blogger Susan McBrine  (Oregon)

Tuberous Sclerosis.
Words a parent never wants to hear… Or expects to hear. Yet every day, all over the world, parents are still getting this diagnosis for their child, who may be experiencing seizures, developmental delay, autism, kidney and brain tumors and more .

I got this diagnosis  for my daughter over 40 years ago and I must say it changed my life forever. I  became an informed, determined, assertive researcher, educator and advocate for making sure that I knew and found all there was  to know and do to help her achieve  her potential. In the process I helped found Tuberous Sclerosis Alliance and tried to help many other famiilies find hope for better treatments and a better life for their children with this disease .

This year we celebrate 40 years of TS Alliance’s existence. The organization has acomplished so much by advocating for and funding research, supporting families and much more. We celebrate, but I am  also saddened that many other young moms are also still going through what I did to get treatment and diagnosis. I am saddened that tuberous sclerosis exists. Yet, as a mom who has raised a child to adulthood and lost her  child to this disease, I am grateful for what tuberous sclerosis taught me about life, love and even her death.

Being a parent of a special needs child is life changing in so many ways, but in my case it changed my career and my perspective on life in general. It made me appreciate little things and focus on what is really important in life.

It also taught me valuable lessons on letting go of a child as she grew.  I learned to finally let go and let my disabled daughter have more of life of her own, despite her disabilities. It is very hard, when you miss those developmental milestones that non disabled kids have — when your child  goes to kindergarten,  off to college, work, marriage — to know when and how much to let go and encourage independence in a child who is basically totally or semi- dependent on you. The need to protect our vulnerable child is great and the tendency to overprotect always exists.

It was hard to step back and stop doing for her and let her do for herself. Dressing herself, going on the bus alone, spending the night away from me at a camp, having a boyfriend, and finally living in a group home with friends. All things other kids may do as they grow up, but for moms like us, whose child needs supervison and support in so many ways, it is  hard to let go even a little.

Letting go and teaching independence is important so that we don’t actually encourage dependence without realizing it.

Teaching age appropriate behavior to a 20-year old who would just as soon wear Mickey Mouse t-shirts and play with toys, that she is a young adult and must dress and be treated as a young adult is hard. I learned how, with help from many in her life, and from her.

I also was pleasantly surprised by how well she adapted to life in a group home at age 27. I thought she’d miss me so much I’d have to bring her home in a week. Nope! She flourished with her newfound independence and social life with her housemates — something I couldn’t give her at home with just the two of us. I also couldn’t continue to give her 24-hour care while I had to work and sleep. She got fresh caretakers every eight hours who weren’t tired, cranky or had other things to do.

What is hard for parents to admit as we get older (and we will) — the 24-hour care taking can be too hard without help. And the time will come when we can’t do it any more  due to our age or illness.

We have to really be realistic about helping our child find a place in the world as an adult without us while we are still around to help them transition. It’s harder if we die and they experience the grief of missing us and have to transition to a new home. That is the letting go and the transition we all worry about the most. We worry no one else will care for her or him as we do.

As a special education teacher of young adults 16 -22, I often heard parents say, “She can’t or won’t do that at home. How did you get her to do that?”  Some of my students had very low ability, but were able to work with some support and could learn to do things like cook, load dishwashers and do laundry for themselves. Things their parents didn’t let them do because they thought they couldn’t. It’s always amazing what they can do when we let go. I learned that my very  delayed and disabled daughter could do so much more than I ever thought or would have allowed her to do until I learned to let go some!

Every child is different and every state and family has different resources available, but it is something to think about for every parent.

Teaching independence and letting go is something to do gradually. After all, we all want all of our children to be happy, have a social life of some kind, to experience love and friendship, and to be able to support themselves in some way. They can’t do that if we dont teach independence  and responsibility to all our children.

Stacia taught me much in life. Tolerance, patience, unconditional love, selflessness and how to see the world through her eyes. Her life was a gift to me in so many ways, although battling her disease was also hell in so many ways.

I am grateful for the support the TS Alliance gives parents today, and for the hope that all our children with disabilities will have better lives to live and increased opportunities to do so in today’s world. We can all help them by increasing awareness of  not only TSC, but of all those with disabilities and their need for acceptance, employment, education and a place in society.

Please see Susan’s contribution from last year’s blogging event about the founding of the TS Alliance.

From Becky (Mixed Up Mommy): Thank you so much to everyone who contributed this year! It has been a pleasure to share your stories and read your personal or your child’s triumphs. I leave you with some artistic contributions from TSC warriors.