Not easy to travel with a disabled daughter | JDM

A Montreal mother determined to travel with her severely disabled daughter must spend hours on the phone with her airline, bring pounds of food and expensive specialized equipment to leave with peace of mind.

“The first times I talked to parents of disabled children about travel, they told me I was crazy,” recalls Aurélie Pouteau. Many are discouraged. »

This expatriate of French origin did not want to deprive her 6-year-old daughter, Alis, who suffers from a rare brain malformation, of the pleasure of visiting her family across the Atlantic. Even if it means having to organize your trips weeks in advance.

“Traveling with her is 10 times harder, concedes the mother. But if we've been doing it every year for four years, it's good that it's possible. »

Little Alis must be transported in a suitable stroller that supports her head and her trunk, otherwise she would collapse.

“The one provided by the RAMQ weighs 22 kg. It's hard to carry. So we bought a model more suitable for travel, says the mother. It cost us $3,000, but we don't regret it. »

Preparation

If little Alis loves the plane, which she considers a ride, getting her on board requires preparation.

Ms Pouteau explains that she always takes care to call the airline a month in advance to inform the staff of her daughter's disability.

“Even if we indicate it when booking online, that is not enough. You always have to explain the same things again, regrets the woman. That said, in general, people are understanding. We were already offered an extra seat so we could stretch it out. »

Aurélie Pouteau and her spouse must ensure that the adapted stroller is put aside during the flight and does not end up with the other baggage in the hold.

“It has happened to us before and we found ourselves having to carry Alis for long minutes while waiting for our suitcases in front of the treadmills, says the social worker. It's difficult, in this case, because she moves a lot and she has trouble holding her head up. »

Luggage should also be prepared with care. Her daughter's disability forces Aurélie Pouteau to stock up.

“This summer, for three weeks, I take 18 cans of milk powder,” she explains.

This ingredient is essential because Alis cannot chew due to her dysphagia.

Provisions

“A box costs $70 and, if I have to buy some abroad, the RAMQ will not reimburse me,” explains Ms. Pouteau.

In terms of activities, Alis' parents adapt to his pace and limitations during the holidays.

“We can’t go to the restaurant, because of his behavioral problems and his need for constant attention. But we go for walks, we spend time with family or on an adapted beach. »

Aurélie Pouteau takes advantage of this. One day, Alis will be too big and heavy to handle, and traveling will become impossible.

“I don’t know how many years we can go on. I prefer not to think about it, she says. You know, parents of children with disabilities all work a bit like that, day to day. »

Alis' travel essentials

She wants to help parents in difficulty

The mother of a 10-year-old child with cerebral palsy and refractory epilepsy has created an organization in Montreal to make life easier for parents like her during the holidays.

“Every summer, when school stops, many parents of children with multiple disabilities wonder how they will be able to take care of their child, notes Nathalie Richard, founder of the organization L’Étoile de Pacho. It is all the more difficult for couples in which both parents work. »

Ms. Richard points out that many parents of severely disabled children who already live in precarious conditions find themselves forced to take unpaid leave in the summer to take care of them.

It was to help them that she created L’Étoile de Pacho.

“Our children need to receive treatments at fixed times and to be supervised by trained people,” explains the mother. There are not many solutions for us during the holidays and parents are not always aware of the ones that exist. »

Few camps

While there are many day camps for disabled children in Quebec, there are fewer of them with the necessary staff to take care of children with several serious disabilities.

“In our camps, we have nurses, occupational therapists and even dieticians,” comments Suzy Guérin, director of administrative and corporate affairs for the Society for Disabled Children of Quebec. But it is sometimes difficult to find qualified staff and some establishments are not always able to accept all children. »

Nathalie Richard explains that in Montreal, only three establishments are able to take care of her son David.

The camp she chose this year costs her $900 for five weeks, but some may charge more than double that.

These camps play an important role for parents of severely disabled children, who often forgo taking “classic” family holidays.

“There are so many parameters to take into account that it can quickly become more project management than vacation,” explains Nathalie Richard. The child may also be anxious about being in unfamiliar territory and, if neither he nor the parents can relax, it does not make much sense. »

They will fly away without their 3-year-old son

A Montreal couple made the painful choice to go on vacation without their 3-year-old son, who has a developmental delay that prevents him from speaking or feeding himself.

“It’s a very difficult decision,” says Sophie Asselin. But that's probably wiser. Going to a new environment is very stressful for Charles. »

Her young son has Angelman Syndrome, a severe neurodevelopmental disorder. He sleeps very badly, does not speak and cannot chew his food or drink without help.

“At first, I thought of taking him with us, but my partner was too anxious, says the mother of two children. He worried about what would happen there if the adapted pushchair broke or if Charles suffered one of his epileptic fits. »

While his parents and his 5-year-old brother Xavier spend two weeks in Alsace, Charles will stay with his grandparents.

Difficult decision

This will be the first time that Sophie Asselin has separated from her son for so long.

This occupational therapist has already experienced the problems that arise when traveling with a child with multiple disabilities.

“My mother has a cabin not too far from Montreal that we've been to before,” she recalls. It's still complicated. There's nothing there, so you have to bring food, except with Charles' stroller and all the necessary equipment, there's no room for anything else in the car. »

Sophie Asselin has also given up visiting her cousin from Quebec in an apartment located on the third floor of a building. Her boy's adapted stroller does not fit on the stairs.

"I can't leave her in the lobby of the building," she laments. It costs $5,000 and I would be too afraid of someone stealing it. »

Feelings

Despite these obstacles, Mrs. Asselin did not definitively give up making smaller trips with her son than this trip to France.

“Even if Charles cannot make memories because of the syndrome he has, he can still enjoy sensations such as the coolness of water, for example,” says the mother of the family.

As for Charles' older brother, Xavier, who does not suffer from any handicap, his parents always try to explain things to him as simply as possible.

“If he asks us why Charles is not coming to France with us, we will tell him that he has gone to his grandparents, explains the mother. No need to add to the syndrome of his brother and overwhelm him with it. He understands the situation well. »