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.

The art of the present

Child giving a gift

For kids who have a hard time taking the perspective of others — kids with “social thinking” challenges — coming up with presents for Mom, Grandpa, or a school buddy is a near-Herculean task.

After all, a present is a way of saying, “I know you, and when I put myself in your shoes, I think you would like this.”

My son, who has an Asperger’s diagnosis, doesn’t do that so well. He is great at thinking of stuff we should buy him. He is the king of online browsing. While I cook, he tells me about various toys in great detail, then emails me the links to buy them.

But he’s not so keen to shop for others. His gift-buying for friends and relatives has always been heavily facilitated.  I suspect that this aspect of “thinking of others” needs to be explicitly taught.

So this year I made a worksheet that breaks down the steps involved in buying a present. Here is one he filled out for a close relative:

Gift Worksheet

Step 1: Brainstorm about what the person likes. Note there are two ways to think about this: by interests and hobbies, which are more abstract categories (“science”); and by what the child has seen the person enjoy, which is more experiential (“frozen yogurt”).

Step 2: Building on the ideas in Step 1, come up with some ideas for gifts.

Step 3: Figure out where the gifts might be purchased or made.

Step 4: Follow through! After your child makes or buys a present, let him or her check off the box and write out what is certainly the world’s best present. If you’re offering positive reinforcement, follow-through should be a big part of earning the reward.

The worksheet pictured led my son to buy a little jewelry kit online. It has arrived, and we will wrap it, but the best part will be watching him revel in “ooohs” and “ahs” when his Nonnie opens it.

A Mother’s Day Message

One day in a coffee shop while standing with a friend waiting for our order, I commented about being thrilled that my daughter scored a 70 on a math final. A mother in front of me turned around with a puzzled look. For her, clearly, a 70 would not be something to celebrate. But after years and years of special education, special tutors, and special mother/daughter homework sessions, our celebration was also special: Never again would my daughter need to take math!

Other mothers may celebrate honor rolls, getting into key colleges, invitations to the “right” parties, leads in plays, wins on a sports field. That day, I realized I finally was at peace celebrating the victories that fit my daughter.

I wasn’t always at peace. I strived for the same celebrations as other moms. Maybe that could happen, I said to myself, if only…I pick the right tutors, advocate effectively enough in IEP meetings for the perfect IEP, research and pick the right interventions or programs. “If only,” I thought….If only I had been more understanding or knew better how to keep my daughter focused….maybe we would have some of the celebrations that other mothers shared.

At that coffee shop moment, I realized that mothers of children with special needs have special celebrations. Once we find those other mothers, we can celebrate together. One mother, whose son with autism was fascinated by toilets and plumbing parts, celebrated when she met another mother whose child had similar interests. During parent therapy weekend at a treatment program, a few moms shared hugs and a box of Kleenex when we listened to our teens — who had ventured into the world of drugs and other risky activities — share tender childhood memories of us, their mothers. Every time we share a small success, a milestone, or a tender moment, we celebrate by temporarily putting aside the worries that come with parenting children with special needs.

During the month of May, when Mother’s Day is celebrated, may all the mothers of children with special needs reach out to one another. Give each other a hug or bring over flowers. Celebrate what is to be celebrated…and celebrate that we have each other.