Children with special needs have extra special mothers

Belated Happy Mother’s Day to all mothers out there, and to fathers who act in that role in the absence of a Mom. Most especially, I acknowledge mothers of children with special needs; mothers whose care and attention is needed every single minute of every single day, often for the life of their child, however long that will be. 

To quote Albert Einstein — “most people see what is, and never see what can be”. Mothers and fathers and others involved in the lives of children with special needs see so much more.

Lots of mothers realise that their child doesn’t have to be defined by a disability with which he lives — challenged, perhaps, but not defined. Then there are mothers who will never experience that outcome; the anticipated and hoped for course of events when parents plan families and become Moms and Dads. Those Moms have long dismissed the notion of  a bit of ME time, like a soak in the tub with candles and music, because they’ve convinced themselves they must not ‘abandon’ their special needs child for such frivolities. Do you know a Mom in that situation? If you do, offer her an hour of your day, so she might have 60 minutes all to herself! 

Mothers of children with special needs do all the routine, daily things that Moms of children without challenges do and then some, especially when the ‘and then some’ throws them into a medical crisis outside their new normal.

In my childhood, children played with other children, most often outside, and those with limitations, as they were able, were included. Sadly, and detrimentally, that’s no so much the case today. Organised sports have gone off the rails to an extent, with helicopter parents brawling in the bleachers when they don’t get their own way, or rather when their little Jack or Jill doesn’t get his/her own way. Oh, what a Mom of a special needs child would give to see her child run track or swim the length of the pool at the local rec centre. 

Instead she often spends many sleepless nights, for months that grow into years, becoming expert on her child’s diagnosis and therapies and education plans. She becomes a master juggler, organising meetings with specialists and educational experts. Oh, and lets not forget all the medical jargon. Moms of children with special needs start speaking a whole new language. 

Parenting is difficult at the best of times and some couples buckle under the stress of maintaining a marital relationship while doing their ‘jobs’ as good/effective/aware/forward thinking parents.

Contrary to conventional wisdom, most marriages of couples parenting a child with disability  are strong, though the demands on time and energy are constant. For those mothers who have an active partner to share the load, the day to day tasks aren’t nearly so daunting but it’s typically Mom who handles the health/wellness of the child with disability with regard to doctors appointments and the like. That’s not to say that lots of fathers don’t participate in those parts of the parent-child dynamic but historically, it’s been the mother.

Think of all the routine tasks you’ve taught your child, from the first moment he could hold a spoon, or stand up and step, step, walk. You tell your child to wake up and get ready for school. Easy, huh? Moms of children with special needs often have to do all those things for their child. Will he ever learn to pull on his shoes, getting them on the ‘right’ feet? Layer upon layer of tasks just to get the day started. Then, at the end of the day, all those bedtime routines. 

Now imagine that your child is age 5, 10, 20, 40, 60 and he’s never learned to do any of those things.

For today’s Moms of children with special needs, I have just a few words of advice. Take time for yourself. You must! If you don’t take care of yourself first, you will not always be the best version of you to put forward for your child. He needs you to be that!

You have a silent cheering section who may not always tell you that you’re an amazing mother. So many wouldn’t have stepped up to the challenge, but you did, so - Happy Mother’s Day to you, today, tomorrow, and all the days that follow that you’ll share with your child who may never be able to say it, but he knows you’re special! 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Is he a service dog or a dog to be served?

Today is a special day for Mr. Digby, the Australian Silky Terrier who, along with Miss Lexie the Maltese, runs the show here at Chez Rockwell. He’s 14 years old, people! Yup! FOURTEEN! Like me, he’s a May baby. 

It was a chilly November day, 10 years ago, that Mr. Digby came to live with me, not long after I had to bid farewell to Mr. Jake, a 16 year old Cairn terrier. Terriers are terrific! 

With a girlfriend, I went to see Digby, a rescue in foster care, (the Mr. was added at adoption) who was waiting for me at Main Street Vet Clinic. Worthy of note was that, while crated, he was very quiet which totally surprised the lady who was caring for him, who said he didn’t like the other people he ‘interviewed’. Perhaps he sensed that I, with my various limitations, was no threat to him and he didn’t need to defend himself. He could see and hear my crutches.

At my urging, the ‘rescue lady’ let him out of the crate though she insisted he’d not come out. She got a surprise when, once the crate door opened, not only did he eagerly come out, he draped himself across my feet as I stood there balanced on my crutches. It was a done deal! He was officially adopted! In ‘dog speak’, lying across my feet was his way of marking me and encouraging me to invite him to join my pack. I did!

Adopting a dog, particularly if your walking is not fluid or you function from a wheelchair, is something that must be well thought out. Certainly, a working dog is well-prepared to meet the needs of those of us who move about on canes, crutches, or in wheelchairs, but the regular canines — pound puppies, lumbering labradors, or even tenacious terriers, don’t seem to know much about wheelchairs, except perhaps where to pee!

Those living with any sort of mobility challenge are well advised to check with a breeder, a veterinarian, or even the local pound, and ask lots of questions. Become educated about the choice of dog for yourself and your family. Some shelters will let you “try out” a dog for a weekend to see if things work out. Although frustrating for the animal, it does allow potential human companions to find out what they’re letting themselves in for.

Living with the quirks of cerebral palsy can be all at once funny and sort of frustrating, especially if one is educating dogs and cats about how to behave around those funny chairs on wheels, and those equally odd looking trees, we all know as crutches. Unlike his predecessors, Mr. Digby did not learn to walk while attached to a crutch. With him, my modes of mobility were a bit more high-tech!

That first day, Mr. Digby wasted no time tearing around the house, barely stopping to take a breath. He leaped up on all the upholstered furniture, one piece at a time, stopping to look at me, hesitating. I learned that he had been abused in his other home, tethered to a kitchen cabinet doorknob for several hours a day, then punished well after the fact for bladder indiscretions. I said nothing, just watching him enjoying his explorations. Realizing nothing bad was going to happen to him, he carried on with his inspection. I passed! Our first evening together was spent with him on my lap. We were off to a fine start.

The next day I introduced Mr. Digby to my wheelchair, as I had done with the Cairns that came before him.  I tied him out on a terrier-proof tie-out line, letting him inspect the chair before I sat in it, with leash already in place to attach his collar. A few turns around the yard, then part way down the driveway and back. Success. He seemed to like it. I would repeat this process for a few days in a row before introductions to the mobility scooter were made. His scooter training went very well and though we don’t get out and about as often as I’d like, he does behave well.

Mr. Digby, though not certified, unless a little bit crazy counts, could be viewd as both a service dog, and a therapy dog. He packs a lot of attitude in that small body. He’s a service dog as he loves to be served, and he’s a therapy dog because he provides companionship. I’m his therapy person given he came from abuse and need to heal emotionally from trauma — our connection  is mutually beneficial. 

We’ve been together almost 10 years, and so on this day,  acknowledging his 14 canine years, I raise a glass. He’ll get a cheeseburger sans bun, portioned out over 4 days. Happy Birthday, Mr. D!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.