Sunday, January 24, 2010

Ahhhhhh, Parents!


I have been away for a week providing training and technical assistance to a school district in Hawaii. Sounds like a plumb job and, yes, the weather was beautiful, the sea is always inspiring and the flora and fauna are breath-taking. The special educators have the same challenges and more that we have on the mainland. But on my flight I was thinking about the parents who are not able to take a six hour flight to paradise or take even an hour to relax and do something just for them. I wrote the following somewhere over the Pacific Ocean. The picture above is taken out the window. See the reflection of the plane in the water?

I have been thinking a lot about parents, particularly parents of children with significant disabilities. As a professor in special education I define significant disabilities as serious or severe health conditions, difficulty or inability to speak, difficulty communicating basic needs, inability or difficulty with everyday life skills such as feeding, toileting, and participation in leisure time activities, and limited fine and gross motor skills. I also include children and adolescents with severe mental health conditions that make a normal life impossible. This definition is not inclusive but I think you get the idea. An expecting mom and/or dad are expecting in many ways. They are expecting a baby who is healthy and they are expecting a wee small one who will meet milestones comparable to their peer baby friends. They are expecting some little person who will learn to say, “I love you”, and will eventually grow into adulthood with a life of their own while still keeping a loving relationship with their parents. There is endless grief when things go awry. Initial and ongoing grief is part and parcel for parents who have a child with a “significant” disability. Eventually there are ebbs and flows of this grief. Life is readjusted and some expectations fade and many more change. Some degree of acceptance comes (and goes and comes and goes). Over-riding all of the emotional and psychological aspects of parenting a child with significant disabilities is the non-stop, on-going care of this child. Remember the early days of a newborn? This little package of heart and lungs and skin and soul is yours and completely relies upon you for life. It is exhausting and exhilarating…..and although it seems endless, it is not. Soon the baby sleeps through the night, learns to walk, communicate, use the potty, socialize with other little persons and adults and moves up and away from mommies and daddies.

This is not the case for a child with significant disabilities. The care is never-ending. Parents of these tiny babies have signed on for the long stretch. I listen to and read the thoughts and worries of these parents and of the endless care they provide as they share their day to day concerns, joys and lives. Remember, “Walk in my footprints for a day. You will understand.” I haven’t and I cannot. I have been the teacher of these children and currently I spend hours and hours assuring that the future special education teachers, school psychologists, school counselors and the occasional general education teacher know how to assess, teach and support these children and adolescents and that they are prepared as best as possible to be the person in their school setting who might make a difference in these children’s’ lives. But I have not spent 24 hours with a child who needs 24 hours of my care and skills to even survive. The parents of these children and adolescents and young adults and often old adults are the experts. You struggle daily and hourly with the weary work of physical care, the night-time worries of “what if?”, “what then?” and the day to day struggle to find and keep services and support for your children. You live with secret guilt. You live with secret anger. Sometimes you are brave enough to share both. You live constantly with fear. You are the heroes. You are the wisest of men and women. Parenting a child with significant disabilities is love on overload. I listen to you and I learn. Let us all support you in every way that we can.

19 comments:

suelmayer said...

Cinda, All I can say is "Thank You", through teared filled eyes, "Thank You".

Elizabeth said...

Thank you, Cinda. Acknowledgment goes an incredibly long way. It really, really does. Thank you.

erika said...

Thank you, Cinda! It makes me feel good to know that someone like you has an influence on future special ed professionals. I missed you.

Jen said...

I have never seen anyone acknowledge parents of special needs children like this, thank you so much, it means a lot. We tend to rely on our friends in the same situation to just understand, but usually nobody else does. You are in the right career, with your caring attitude you will have an enormous influence on the lives of so many children. Thanks again. Jen.

Judith Ellis said...

Yes! Yes! Yes! Many blessings beautiful parents. Thank you, Cinda, for your love and support of these.

Through Thick and Thin said...

thank you cinda -
this is THE toughest job in the world - but when it all comes down to it, i wouldn't trade it.

Taz said...

Thank you Cinda xx

Cassandra Sines said...

I also want to say thank you for acknowledging how difficult this is. It really does mean a lot when you are in the throws of the battle! Keep on teaching those special needs teachers as they are a partner in what we do to help our children!!!

Nancy C said...

Cinda, you have such a big heart. Thank you for opening up worlds and providing comfort.

Corrie Howe said...

I'm glad to see you have affirmed so many parents of children with significant needs. I know you've found a number of these parents and they have found you.

Have you found "Ashley's Mom" who writes "Pipecleaner Dreams"? She actually adopts kids with significant issues. In fact she's trying to adopt a fourth teenager who is deaf and in a wheelchair.

Cinda said...

I thank you for your kind comments but do not deserve any "kudos". I have had times with my daughter where I experienced the commitment needed by these wonderful parents but my daughter became stable. I wish the same for these parents. I wish you great huge moments of peace.

Ashley's Mom said...

Thank you, Cinda. Like another commentor said, acknowledgement goes a long way.

You are remarkable!

Deborah

pixiemama said...

Ahhhh. Hawaii.

Thanks - I needed to hear this. It seems weird that in the midst of the turmoil one of the things that we long for the most is validation, but it's true. Raising children with special needs is lonely and exhausting.

xo

Carrie Wilson Link said...

Thanks for this beautiful piece, and thanks for weighing in re: the dog!: )

nici said...

Adding my thanks to the ones before. Most days I forget that my fellow moms, those who are parenting typical kids, are not also staggering under this never-ending (yet often invisible) weight, and I end up believing the real problem is that I am incapable, weak, or ungrateful. The days when I DO remember what sets us apart, I ache with disappointment when I realize that, despite my "handling things", the work will never be done, the fear will never let go all the way. But, with both hands, I eagerly grab every moment of triumph, humor, peace, and - here - acknowledgement, that move our story along. Those things are my lifelines. So, thank you for one more. :)

Brian Miller said...

thanks for dropping by today...i do in home therapy with kids that are at risk of being removed from their home. i feel this every day...when i sit with the parents. or work with their kids.

Tanya @ TeenAutism said...

I love this, Cinda. The part about "secret anger" and living with fear really spoke to me. Thank you for all you do.

gayle said...

My brother has special needs (he just turned 50) and I am so happen he is surrounded by people that love him!! What a wonderful post!!

Mrs4444 said...

I agree. As a spec ed teacher, I do have a frame of reference for parents of children with disabilities, but I have NO idea how difficult it must be. It does feel good to be able to offer suggestions and resources; I'm at least glad for that.