Let Me Share With You

Just because our children have different needs and abilities does not mean we don't like to talk and brag about them. We can't usually talk about the after school activities, the football games, the parties, the sleepovers, or the dances our children attend. We don't often talk about the shopping trips with our daughters or our trips to the movies or the local theme park. And, we don't often talk about the future - what colleges are children are applying for, the type of husband or wife we hope our child will choose, or the number of grandchildren we long for.

Rather, the subjects on which we can speak involve g-tubes and traches, therapy visits and doctor appointments, impacted bowels and catheter sizes, special needs trusts, school struggles and court cases.

In other words, we speak about things most people aren't interested in hearing.

It may make them uncomfortable. I know my co-worker doesn't want to hear why I have to scrub my bathroom three times a week. They may not know what to say or how to contribute to our stories. They may even think we complain too much or make too big a deal out of things.

With a few rare exceptions, they don't 'get it.' They can't imagine living the life we special needs parents live, and they can't imagine having a child for whom end-of-life planning happens before the child is 5 years old.

But it doesn't lessen our need to talk and share. What can I do to make these non-special-needs parents and caregivers be comfortable when hearing about my life and the life of my children?

Miss Deaf America Snubbed

I searched and searched the wide web for a video of Miss Deaf America signing America The Beautiful at last Sunday's Super Bowl. I know she was there - well, I assume she really was there - but I don't know for sure because she was never on camera - or even anywhere near Kelly Clarkson while she sang the same song.

Rachel Mazique, the 2011 Miss Deaf America, had this to say about the snub:

“I truly hope that this becomes a teachable moment for everyone involved, and that American Sign Language renditions of these iconic songs are broadcast in future Super Bowls rather than being a token gesture.”

A group of her supporters are asking that NBC grant her an interview on the Today Show, and have started a petition in support of that request. There are already over 5000 signatures. If you would like to add your name, here is the link.

And apparently this same thing happened last year. Let's make sure that next year is different...

Not A Skill Set I Want

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

Sad to See it End

This is the first year that I have been sad to see school end for Ashley. Really..can you believe I just made that statement???



Ashley's teacher is wonderful. She is the first teacher that has ever - EVER - taken a real interest in learning how to effectively teach Ashley. That teacher has also decided to pursue a Masters degree in Reading and Literacy with a focus on students with deafblindness.

Whoa! Sounds almost like the Twilight Zone, or like maybe I am caught in a dream.

The changes in Ashley have been monumental because of this teacher. And, the high school Ashley attends is very inclusive. Yesterday, the PTA gave out tee-shirts to the kids that had the words, "J.R. Tucker, Henrico Countyis Best Kept Secret." And it really is that.

So thank you, Mrs. Marsh. Thank you to all the teachers and staff who have made a difference in Ashley's life. Thank you to the clinic nurse and staff for taking such good care of my daughter this school year. Thank you to the administration for the support you show your teachers and staff, and for knowing personally who Ashley is. I know in a large school that it must be difficult to know all the students, but somehow you make it happen. Thank you to the bus drivers and aides. And thank you, other students, who called Ashley your friend.

We will miss you all, but look forward to September!

Breaking Out the #2 Pencil

This seems to be the season of surveys.

I’ve gotten one from our state’s program that supports students with deafblindness. They wanted to know what they could do to help youth between the ages of birth and 21 who happen to have deafblindness. That survey took me about 20 minutes to complete, and I’m betting my answers won’t be well-received.

A second survey arrived, this one from my community service board. The community service boards provides case management and other elusive services to people with intellectual disabilities. That one took me about 15 minutes, and again I’m betting my answers won’t be well received.

Then came the survey from my oldest daughter’s day support program. Of all the organizations that purport to provide support to one of my children, the day support program does seem the most interested in the clients’ and client family opinions. Over the years I have noticed positive changes.

Finally, my school district sent home a satisfaction survey. Each one of my children who are still in the public school system (4 of them) brought home the same ‘circle the most appropriate answer’ four page survey. Parents were told to return the survey within 15 days, but starting on day 5, we got phone calls, notes from teachers, and brain-washed comments from our children about returning the survey. I imagine a computer will read the responses and spit out data interpretations.

I appreciate that all these organizations are asking for my opinion, but I wish it were a little less structured. How about sitting down with me, or calling me on the phone so we can just chat?

An organization that provides post-adoption support services for my family conducted their satisfaction survey that way one evening this week, and I had a much better feeling about the whole process. Talking to a real person – a person whose name I recognized – was much better than filling in circles with a number 2 pencil.

I’ll just wait and see which, if any, of the organizations does actually make some changes….

I Am The Mother

If you are fresh out of college with a degree in education, social work, medicine or something similar, please do not pretend to understand my child’s needs better than I understand them.

If you have been a practicing professional for many years, and your practice has included children with special needs, I am interested in your advice and opinions. However, the ultimate decision on how to raise my child rests with me.

Just because you have a cousin who has a child with Autism, you do not know what is best for my child with Autism.

If you have raised no children of your own, don’t act like you know how to raise mine.

Unless you plan to support my child as an adult, you have no say in the choices my child and I make concerning his/her future.

It’s kind of you to try to understand the worry, the guilt, and the all consuming love I have for my child with significant special needs, but you really and truly cannot understand. Please do not judge me based on your limited understanding.

Just walk beside me – hold my hand when I need to feel someone’s touch – hug me when I am down – cry with me when I am overwhelmed with worry.

Don’t lecture – don’t judge – don’t pretend.

Rejoice with me in my child’s every accomplishment, no matter how insignificant it may seem to you.

Respect the choices and the decisions I make. Respect me. Respect my child.

I promise I will do no less for you.

Circle of Friends

Ashley came home from school yesterday with some artwork that she and a student in regular ed created together. With it was a note explaining that the regular ed student was one of the 'Circle of Friends' club at the high school.

I had heard about Circle of Friends from my son who recently graduated from this high school, and I had heard from other parents. Although comments have been mixed, the majority have been positive, and the existence of this club was one of the reasons I chose to send Ashley to this high school.

Regular ed students join Circle of Friends as an extracurricular activity, similar to joining the Spanish Club, for example. When the students have study hall, or sometimes before and after school, they will volunteer in the special ed classrooms. I'm really hoping these students will help bring Ashley the social experiences that most high schoolers find.

As I wrote earlier this month, I've pretty much given up on expecting my school district to provide an actual education for Ashley, but I haven't given up on the social aspect that school can provide. So far, it seems we are on the right road for that, and I will be keeping my fingers crossed that it can continue.

Does your child's school have a similar program?

Holding Fast To Our Dreams

This past weekend I spent time with some of our Dreamcatcher families. Dreamcatchers is a state-wide support group for families whose lives have been touched by deafblindness. Formed ten years ago, Dreamcatchers is a 501-3c non-profit organization that relies on grants and donations to exist. We have a board of directors, but they are not paid for their time. All staff time and effort is graciously donated by our families. What that means in these difficult economic times is that our group is almost broke.

Each year in the past, Dreamcatchers has held a family retreat weekend. Bolstered by grants from our state’s deafblind project, our state Department of Education, and our state’s Department for the Blind, we have been able to bring all our families together for a weekend of respite, learning and networking, all at absolutely no cost to the families. In some cases, it is the only ‘vacation’ some of our families get. But we were not able to do that this year.

This year we received no grants from the Department of Education or the state Deafblind Project. And we are waiting to hear if the Department for the Blind will assist. So, we’ve had to change our model of support this year. Instead of a retreat weekend, we are having several day-long events in three areas across the state. Our families never all get together, but at least we are doing something.

Our first of those day-long events was held this past Saturday. It was a wonderful time of fellowship, story telling, advice gathering and celebration. Parents of children with disabilities, especially parents of children with a unique disability such as deafblindness, need a connection to other parents in the same situation. Often it has been the only thing that has kept me going during times of extreme struggle.

We parents need to know that we are not the only ones who celebrate battles won but worry constantly about the war. We need to hear how others have fought insurance companies, school districts, hospitals and other medical practices and restored the rights of their children. We need to know how the everyday struggles are handled, how the sleepless nights turn into exhausting days, and how the smiles on our children’s faces make everything right.

Dreamcatcher families have been doing all this and more for each other for ten years. And even though the economy is kicking us in the behind, we will continue to do it for another ten years and longer. We are watching our children grow into fine adults. We are welcoming new families with young children, and we are rejoicing in the successes of our adult children. And, we are doing it together.

I am grateful for the friends I have made through Dreamcatchers, and grateful that such an organization exists. Here’s hoping and praying that we continue to grow our organization so more families can feel that connectedness.