My Special Daughter and I Also Deserve Summer Vacation

My Special Daughter and I Also Deserve Summer Vacation

My Special Daughter and I Also Deserve Summer Vacation

As summer draws to a close and the new school year begins, one mother shares her experience of the past month when her family, together with their daughter with disabilities, attempted a family vacation.

First published in Israeli Hebrew media, the following translation sheds light on the challenges and complexities of special family vacations and the need for disability awareness.  

Taking an annual vacation is a challenging, often impossible, undertaking for family with a child with disabilities. The choice of accessible sites is far from diverse, and most places do not take our needs – often easy to implement – into account. And what about the whispers and side-looks discreetly or not-so-discreetly flung our way from other vacationers? Sarah Shemla, mother of a daughter with special needs, provides an insider’s view into what vacation with a child with disabilities looks like.

As summer vacation nears, we, like all parents, face the question, how we are going to occupy our children all summer long? This question worries all parents, however for us, a family bringing up a child with disabilities, the question poses more than just another “headache.” It is a truly challenging issue. And planning a family vacation for the summer – the kind of vacation that provides loads of good times and good memories – is a very difficult undertaking, one that for many of us is simply impossible.

During the summer, families of children with disabilities are left out in the cold, plunged deep into feelings of helplessness.

Most of the year, our children attend schools and centers providing all-encompassing care from professionals and volunteers who help them perform all elementary, day-to-day tasks. During the summer months, however, the children are without their usual structure, and there is a dramatic reduction in the assistance and care provided. And that is okay. These children also need a vacation and deserve to rest from a year of hard, intense work. But, at the same time, many special families feel stranded and helpless.

Not many tourist attractions, sleeping accommodations and hiking trails accessible to people with disabilities exist. Consequently, our choices are limited, and we are forced to revisit the same sites over and over and over again. Our children with disabilities have more moderate wants and needs than other children, hence this redundancy may not bother them, however many children with disabilities have other siblings, children without disabilities. These other children often develop an aversion to revisiting the same places. They want diversity. They want new and more challenging experiences.

While “regular” parents console disappointed children with simple promises of, “Cheer up, next year we’ll go somewhere else,” we cannot make such a guarantee.

This summer, our family overcame the challenges and planned a vacation for everyone. Happy and excited, we left for our trip up north, ready for a few days of rest and enjoyable activity for the kids. We were well aware of the challenges and difficulties inherent in such a trip, but were full of hope that we would succeed and our trip would be great for everyone. In reality, though, once again we were exposed to people’s blatant lack of social awareness to the challenges facing families of children with special needs.

Her smile disappeared as if it never existed

Examples are not lacking. In one location, at one of the local shopping centers, the play area was packed with kids enjoying the wide variety of fun activities. My daughter got excited and wanted to play alongside the other children, but not even one piece of playground equipment was accessible to her physical condition! “How can that be?” I asked the person in charge. “Don’t you have even one activity accessible to children with disabilities?” He answered that no, unfortunately they did not. And my daughter’s smile? It disappeared as if it had never existed.

So, we moved on to the next place, a site that advertised exciting rides on golf-cart-like vehicles. Knowing as we do that such needs abound, we thought that certainly we would find one vehicle accessible to children with disabilities. Not every child with disabilities requires oxygen, but every child with disabilities requires special adjustments. To our dismay, once again we were disappointed to discover that the array of vehicles did not include even one accessible car. Once again, my daughter could not take part in the activity.

Next on the list, we visited a famous kayaking site. I had, of course, no expectations that my daughter would be able to kayak down the river, but I did plan to sit with her by the side of the water. Together we would watch my husband and other children having fun as they made their way downstream. Not an optimal situation, but at least we would be together.

Not many people are aware that children with disabilities tend to suffer tremendously from the heat or cold. Heat, as we know, is an outstanding characteristic of summer, so we had to come up with resourceful measures to deal with this issue as well.

We thought that perhaps this particular site would have some level of awareness and would be able to provide us with a creative solution. Maybe they would have a well-shaded area or an air-conditioned room with an electric socket from which we could comfortably look outside while my daughter stayed hooked up to her all-important respiratory machine. Sadly, there was no such thing. The only “creative solution” we could agree upon was that one of the parents would take her back to the guesthouse while the other parent stayed with the kids to enjoy the activity. And so, it was almost impossible to go out as a family and enjoy a good time together.

It may be difficult for the average person on the street to understand the level of complexity involved in preparing to go out with a child with disabilities, whether a short day outing or an extended vacation. Every child with disabilities requires medical and/or assistive equipment at their disposal. This may include a wheelchair, respiratory equipment for oxygen-dependent people and more. No matter what equipment is required, special arrangements for travel and mobility are necessary and the number of attractions and sites accessible to such equipment and available for the child’s enjoyment are limited.

The term “spontaneous outing” does not exist in our vocabulary. To go in whatever direction your heart leads, or to experience the new places that “everyone is talking about,” is simply not possible. And what about flying? For most of us, plane travel is no more than a daydream.

Dealing with stares and whispers

Coping with our situation entails yet another, emotional aspect. Hotels and tourist spots are filled to capacity at this time of year, and it often happens that our entire family faces stares, whispers and reactions of outright aversion from other guests and visitors.

For this reason, we naturally prefer quiet, less-frequented areas, yet, as I said, such places are hard to find. Suggested solutions include either abandoning the vacation idea altogether or putting up with the unpleasantness. We, as parents, can somehow stomach the situation, but what about the younger children? Why should children have to endure all of this?

I would like to point out that there are organizations and associations which do excellent work and assist in finding accessible vacations and get-aways for families of children with disabilities. But they can’t do it all alone. Moreso, many families are unacquainted with these organizations. As educational advisor in a rehabilitative center, I come across quite a few such cases when parents turn to me for assistance with their difficulties and feelings of helplessness.

These families, my daughter with disabilities and I all deserve an enjoyable summer vacation. We deserve the opportunity to enjoy the magnitude of fun attractions and pleasant locations. Hotels and tourist spots must be understanding, and they must take into account the complex realities of special families.

The number of accessible sites must increase. Nature reserves open to tourists must offer shaded and air-conditioned areas replete with small but crucial necessities such as electric outlets that will enable us to use respiratory machines or other medical equipment. Play areas must have equipment accessible to all children, and most important, awareness must be deeply embedded into the social consciousness. Only thus will we be able to break down the walls of aversion that prevent the full integration of those who simply look or act a bit different than most.

The writer, Sarah Shemla, is the mother of Miriam, a girl with special needs, and educational advisor at the ADI Jerusalem rehabilitation center’s special education school.

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