30th Anniversary: I am Matrix, and So Are You

Matrix 30 Years (1983 - 2013)In the lifespan of nonprofits, 30 years is no small potatoes. It means that many people have worked hard to keep Matrix moving forward: the founding mothers in 1983, the first funders (Gannett Foundation), and the first families that found support and information in Marin County…who then told their friends to come to us.

In those 30 years, we went from supporting families in Marin County to expanding services to families in the North Bay to becoming known at the regional and state level. Eventually, we joined the national network of more than 105 federally funded parent centers. Our knowledge base grew to the point that we were designated by the U.S. Department of Education to provide technical assistance to other parent centers in the western states and Pacific island regions.

Matrix FamilyAll of this work — all of the families we have seen, all of the resources, information and training materials we have shared, and all of the parent-professional partnerships we have worked on — was not accomplished alone. It was a team effort by dedicated board and staff, volunteers, the disability community, families, professionals, funders, and community members. These are the folks who believed in our mission of empowering families. They knew that informed, confident families make important decisions that will benefit their children with special needs.

Each of those partners can make the claim “I am Matrix.” The faces of each are different; the actions each took were different: from the family seeking support to the funder who invested in us to the staff and volunteers who connected families with each other and provided critical information to the community, which then became more inclusive.

Our theme for our 30th anniversary is “I am Matrix.” You’ll see and hear vignettes throughout the year from folks who explain just why they “are Matrix.”

In the Spring 2013 issue of the Networker, we look back at our beginnings to where we are today, and list ways that you can help us celebrate 30 years of partnering and service. This year will be action-packed with events and opportunities marking this important occasion. We hope that you will join us wherever and whenever you can, because…you are Matrix, too!

Nora's Signature

Nora Thompson, Executive Director

Hard Work

Couple on a path

“How do we make ‘couples’ time when the practical daily needs of that child (and any siblings) consume so much of our attention?”

“You have to work hard to make a marriage work.” “Bringing children into a relationship can be hard.” “Balancing the all the needs of a family is hard work.” “Having a child with special needs is hard on relationships.” We have all heard these statements over the years and the horrible, though maybe exaggerated, statistics that highlight the failures. Generally those statements, when heard separately, are depressing enough. But sometimes, for some of us, they are heard en masse, a scary preamble that can make the most stable person want to cower in the corner in the fetal position. We are those parents who have (or had) partners/spouses and family that includes a child with significant needs. Is cowering in that corner an option? Not really! We have the daily business of parenting that child and being a family on our overcrowded, fragile plates.

How do we take this tough situation we been dealt and make all the moving pieces work? How can we build and maintain a healthy adult relationship with our partner when the odds seem stacked against us? How do we make “couples” time when the practical daily needs of that child (and any siblings) consume so much of our attention? I vote that we get 8 more hours added to each day to do everything … so far that hasn’t happened.

I write this piece as someone who has been married a long, long time. I do not have words of wisdom or magic methods to share that will work for you. We are not the “perfect” couple who beat those odds. We just are who we are. We are not the best communicators, and each of us has a few teensy irritating qualities. We both think we give into the other more than they give into us. But we are still together.

It has been hard — at times harder than either of us could imagine. Some of those hard times were linked to our daughter and her disabilities, some involved our other children, some just came from having different expectations of each other. There were also joyous and wonderful times. Sometimes we are a united force who face challenges as one, and sometimes we are deeply divided about what the best action is. We have learned to pick our battles, the ones on behalf of our daughter and the ones we have with each other.  Though as an “experienced” married couple, the energy expanded to really battle each other seems better used elsewhere. So the battles between us are less frequent

We have a child with speical needs:  Soluations & SecretsSince I have no words of wisdom, I am pleased to announce that at Matrix’s 6th Annual Author Luncheon Benefit on April 15 will feature Fran Pollock Prezant, M.Ed., and Laura E. Marshak, Ph.D., authors of Married with Special-Needs Children: A Couples’ Guide to Keeping Connected, and founders of Disability & Family Balance. They have great information, strategies, and some secrets to share that may help you beat the odds.

Brown Paper Tickets  I hope you can join us! Click here for more information or click here to purchase tickets.

Playing Santa is Sometimes Hard

Kate and Santa

When my daughter Kate (who suffered a brain injury at age 2) was young, we’d go see Santa and take the annual picture. Positioning her on his lap, wiping any drool away, and maybe even getting her to smile meant we had to find the really patient Santa and go when there wasn’t a line of other kids waiting. I knew exactly which mall had that good Santa. Kate wasn’t verbal, so at least she didn’t have a long list for him.

Let’s talk about that Christmas list for a bit. Most kids, by the time they are 3 or 4 years old, have this whole “presents” thing mastered. They’re able to rattle off an amazing litany of toys with very specific requirements. Even if they won’t sit on Santa’s lap and tell him item by item what they really, really, really want, lists are made and letters to the North Pole are sent. In other words, most parents have a pretty clear idea that, come Christmas morning, the toys waiting under the tree will be a hit.

However, when you have a child with special needs — especially one who scores well below the norm in expressive language skills — it’s hard to know what to shop for at Christmas. Should we get age-appropriate toys? That’s much tougher as the child gets older and the options decrease. Should we look at toys or activities that promote development? Can’t I just get her a stupid Barbie? That’s what her sister wanted at that age.

Target Toys

How can you make a child’s eyes light up if she can’t tell you what makes her happy?

I clearly remember trips to toy stores at Christmas, walking up and down the aisles, trying to find something that might make Kate’s eyes light up on Christmas morning, just like my other kids. Many times, I left those stores in tears with another stuffed animal to add to her ridiculously enormous collection, or with another silly toy that could be adapted with a switch she could hit to activate light and sounds. Batteries were never included, so a $7.95 toy wound up costing $49.95 by the time it was adapted and fed four D batteries practically every day. Did she enjoy those toys? I guess so. Did they make her holiday bright? I have no idea.

When Kate’s grandparents, aunts and uncles, or siblings asked us for gift suggestions, we couldn’t help them. No, I needed those rare ideas for myself. Another wrinkle: Kate’s birthday was in mid-November, so if we scored on her birthday, Christmas became that much harder.

Spoiler Alert:  This is not one of those inspirational holiday posts where the true meaning of Christmas is revealed.  I know that in the grand scheme of things, gifts are not what makes a Christmas good or crummy. I also know that my daughter was truly loved. But playing Santa and watching your children open presents that make them squeal is one of those moments that makes being a parent so rewarding.

For most families, after the flurry of wrapping paper settles, the happy shouts die down, the missing instructions (or the tiny but important piece that accidentally got wadded up with the wrapping paper) are found, many of those toys come to sit in the corner, ignored or forgotten, once the newness wears off. I guess we just skipped a few of those steps with Kate.

Kate passed away at the age of 26 — almost four years ago. I miss her terribly every day. Do I miss the frustration and challenge of finding the perfect Christmas present? You bet I do.

Invisible Friends — A Message from the Director

Floatilla ImageParents who turn to Matrix often tell us they feel so alone, in unfamiliar territory, not knowing what to do or where to go for help.

Sound familiar? Well, take heart. There is a wonderful community of folks who are there for you, cheering you on — you just haven’t met them yet.

Let me introduce you to some of your champions. They include the experienced parents whose children are grown, yet who never hesitate to reach out to help new families who are struggling to understand a diagnosis or find the right door to access a helpful service. They are the volunteers who work tirelessly on events that bring in needed funds so we can continue to help you. They are our individual donors, 65% of whom do not have children with special needs, but who nevertheless feel the powerful urge to help. Help you.

You may never actually meet these folks, but they are there for you and your child, doing their part to make sure you don’t have to manage all by yourself.  Several years ago I heard a conference speaker, a native Hawaiian mother of two sons with significant disabilities, use the powerful imagery of the Polynesian culture to address that feeling of isolation:

“This is where the process can become exciting as well as anxiety-producing…you may be steering your canoe into uncharted waters with unfamiliar guiding stars, winds and currents. You may need to invent a compass for this voyage that is custom-made for the unknown. You may need to search for someone who has steered this course or one similar to yours. You will need to trust in yourself and in those with whom you travel. You will sometimes feel alone, but know that you are not alone. There will be in spirit a flotilla of canoes with you and your family through every reef and every set of rolling surf. The canoes will be filled with children and their parents, their siblings, their teachers, their doctors and nurses, their friends and relatives.”

I would add volunteers and donors to that flotilla of canoes, plus the families who have come before you and those who have yet to set out on this journey. They — and we — are all rooting for you, and many are there to help you make this journey.

Nora's Signature

Nora Thompson
Executive Director