Matthew’s physical disabilities were severe enough to complicate his life. His mental illness threatened to take his life. He never used words to communicate. Although he did converse using his own version of sign language, when anxious he used all his signs at once or signed ‘yes’ to each question we asked. My husband and I had to guess what he needed.

Children with developmental disabilities and mental illness and their families need specialists in all areas of support. They need innovative thinkers, who value all members of society. They need professionals who will keep trying when the usual methods fail, experts who care enough to offer the same support they would to their own family member.

After years of searching for the right avenues of care that met Matthew’s challenging physical and psychiatric needs, listed below are ten suggestions to consider as you advocate for your family member.

1: The family doctor:

When Matthew was born in 1970, the head pediatrician at a major hospital told us that although he could breathe on his own, he’d be a vegetable with a heartbeat and to institutionalize him immediately. The family doctor we had at that time echoed these sentiments.

Within weeks, Matthew learned to suck and swallow. At 2 months, he could hold his head up. We brought him home from hospital and looked for a new family doctor.

The physician we chose did more than look after Matthew throughout his life. If Matthew was seriously ill, this doctor called us at home long after office hours were over and never failed to support my husband and me in our efforts to help our son achieve the best quality of life possible.

2: Think way outside the box:

At eighteen months, Matthew still couldn’t sit up. He had a left hemi-paresis (paralysis) and his body was not strong enough to support him. We enrolled him in a swimming class for children with developmental disabilities. Within six months, he was swimming from the middle of the pool to the edge, where he pulled himself out, sat on the deck and waited while other children took their turn with the instructor. At age two, Matthew could swim better than the average adult, and was chosen to swim on national television in Canada as a miracle baby.

3: Do What seems sensible and the least invasive:

Matthew didn’t walk until he was seven years old. And then, he walked on his toes. Our family doctor suggested we see an orthopedic specialist and made the referral. The ortho looked at Matthew’s feet and scratched his chin. “He’ll need surgery to release the tendons otherwise he’ll never put his feet down.” I scratched my chin and went back to the family doctor who suggested we try a physiotherapist and booked an appointment with her. She took Matthew’s feet in her hands. “Just move his feet in an up and down motion. In six months the tendons will be stretched enough and he’ll put his feet down.” It didn’t even take six months. Goal accomplished without surgery.

4: Look for answers and learn to keep looking:

When Matthew was in his early teens, a psychiatrist at the facility where he lived, observed him for thirty minutes, having read his file prior to our appointment. He asked me some questions. “Your son’s autistic. And I’m going to recommend a neurologist for his mood swings.”

The neurologist, also having read Matthew’s file and the notes from the psychiatrist, prescribed Tegretol. “This drug will calm him down, and help with seizures. I’m also going to make an appointment for him to have an EEG.” (Electroencephalogram) The neurologist diagnosed Matthew with bi-polar illness accompanied by seizure activity.

No seizure activity was present (we’d never seen Matthew have a seizure) but Matthew stayed on the Tegretol for years. Initially it did calm him but once his body got used to the drug, it did nothing for his mood swings.

The diagnosis or labeling of Matthew’s condition, held him back from further investigation and the proper diagnosis and treatment. But it took us years to reach that conclusion.

5: Follow your gut and get the right supports around your child:

Matthew’s mood disorder worsened. At age sixteen, he developed Pica, (an eating disorder) and began swallowing objects that were non edible such as pocket combs, pens and plastic objects. He had many surgeries to remove these articles from his stomach.

To save our son’s life, we transferred him to an agency that offered a new and innovative model of service called Home Share. Matthew went to live in his own home (either owned or rented by the agency) and was supported in that home by a family who, in exchange for room and board, were his caregivers. The selection process took many months but the chosen family lived with and supported Matthew for fifteen years until his death in 2010.

6: Seek new ideas:

Once Matthew moved in with his caregiver, his mood swings lessened but didn’t stop. A new neurologist stopped the Tegretol, saying it just probably just made him dizzy. He recommended no medications. After observation, Matthew’s mood swings seemed to be cyclical and thus, manageable with the help of his housemates, ourselves, and his daily companion.

7: Everyone is better busy:

Each day, Matthew went into the community with his job coach, a young woman hired by the agency. She, too, supported Matthew until his death. Together they shopped, visited the library, did volunteer work and once a week, delivered the local newspaper, a paying job for Matthew. He also socialized and swam at the local YMCA where people were amazed by his skill.

8: Family and friends:

The love and consistent support of family and friends is the most important ingredient in a happy life for any individual. Matthew lived apart from us but he knew his visiting days. We enjoyed our time together but he decided when it was time to go back to his own home – always after dinner. The food and ice cream were all gone so why hang around? He’d grab my car keys and head outside.

9: See every possible specialist for help:

We discovered through visits to an allergist and a gastroenterologist that food control could benefit his moods and sleep pattern. Matthew had a peanut sensitivity and seemed adversely affected by red food dye, caffeine and sugar. Challenging for us and for him – peanut butter, coffee, Coke and sugary treats were among his favourite foods. But decaf coffee, diet Coke, and sugar free goodies satisfied him.

10: Brain doctors:

As Matthew aged, his compromised brain seemed to deteriorate. After years of relative stability, his mood swings returned and worsened. He had frequent sessions of aspiration pneumonia due to his spastic esophagus.

We found a wonderful psychiatrist who diagnosed Matthew with agitated depression and treated him until he died in 2010. While there was no “cure” for his mental illness, this gifted man offered relief to Matthew and peace of mind to us.

With the help of the community, professionals, caregivers and family, my husband and I knew we’d done everything possible for our son to achieve the best quality of life during his forty years.

 

Donna Kirk is the author of Finding Matthew, A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit

All royalties for the sale of the book are donated to charity.

 

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