Why special needs families stay in fight mode.
In a recent story, a private club with a swimming pool will not allow a child with autism to use a floatation vest causing, obviously, the family not to join the club. Officials at the club say they don’t allow anyone to use floatation devices of any kind, and “if an exception was made for one, an exception would have to be made for all, and that was not possible.” Why is it hard for the pool board to say yes to this family and no to others who many complain?
Every. Single. Day. There is a reminder of how families with a child (or more) with differences has to fight and sometimes for the simplest of things, like the right to attend events and the right to live in the community and productive.
During the time that my kids were at their local public school they were really sick. My son was on hemodialysis (at the hospital three days a week) and they both had kidney transplants at age eight. They were out for recoveries from multiple surgeries, procedures and illnesses connected to their health condition. Many times I had to run in and get the kids right before the end of the day. Technically I should have picked them up 45 minutes before dismissal. But because they also wanted the kids to be able to be in school as much as possible given their delays (and I wanted to be at work as much as possible), they let me pick them up right before dismissal, sometimes by just a few minutes. Seeing me approach the door, the staff in the front office often called for the kids before I opened the office door. They made an exception. Because it was best for the kids and for the family. I’m nothing special, they would have done it for any family in our situation.
Exceptions sometimes need to be made. We’re a world of different people and different situations and some people need exceptions.
We need extra time to arrive and leave and sometimes we need extra space. We need patience and understanding by people in front of us, behind us, next to us. We need a little bit of a break with things that make life easier like a better parking space, a fast lane at the E.R., a frequent flyer program at our pharmacy. We sometimes enjoy the perks of an attraction open just for us (free!) to help with the crowds making it the only way we could/would attend. We need people to help clean up the aisle in the store and not give us “the look” when our day falls apart (sometimes a lot of days in a row). We need the exception of floaties and harnesses without judgement, we need to help our kids by keeping them in strollers past the “acceptable” age. We appreciate the financial breaks we get and it makes it possible for us to do other things like donate to causes or to buy equipment our kids need to function at school and home. We need people to accept our kids and work with us to help build friendships and social skills.
We need exceptions all the time.
I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.
To me, this kind of “fighting” doesn’t even feel like fighting at all. It feels normal.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
While 99% of the time I completely agree that accommodations should be made and I speak as the sister of someone with special needs. In this case I disagree. Water is different. You cannot allow a child who is able bodied to be in a flotation device, they provide a false sense of security to both the parents and the child. I completely understand why the pool was unable to take that risk.
Uh, what? Not true at all.
You make interesting assumptions about “able bodied” and the parent’s level of supervision that invalidate your argument.
The floatation vest allows the child to swim. And because he likely has low muscle tone (commonly comorbid with Autism spectrum disorders) he may be either able to swim but cannot do so without become tiring quickly, or unaware of his surroundings or the danger levels posed in certain situations.
As a (special needs) parent of a special needs child (“I’m not just the president, I’m also a client!”) I can assure you that if the parents went through the trouble of asking for an exception, which is generally a pain in the ass enough as nobody ever has authority to do anything nonstandard anymore, it’s always inevitably someone’s boss, or a committee that meets biannually, or “it’s up to national HQ as to how we do that” – the child needs it, and they are right to ask for it. And you can count on the fact that the child’s parent’s watchful eye would have been on the child the whole time.
To say that floatation devices are risky? The US Coast Guard would beg to disagree.
Well said Paul.
Rachel, I have to add that I think there’s a central theme in your reply that not enough people address and that is that as parents we have the right to do what we think is best for our kids and our family without the judgement of others that it is wrong. The family has a reason (what if the child is a runner and slips away from them easily?) and that is good enough for me if it’s not harmful or illegal.
The pool committees didn’t say they witnessed the parents leaving the child unattended while using a vest. They said that’s the rule and they couldn’t make an exception.
Rachel,
While I understand your POV, I think it is completely unreasonable for them to deny this child the right to use his flotation device. It would be great for this child to swim and it is only safe with the floats.
My son has a trach and can not go in water with out a floaty ring, he is MORE of a liability without it.
I think is unsafe to have children without floaties to begin with but the article was more talking about how hard of a struggle these type of situation are for families with special needs. Everything is a battle, this would have been a fun family activity but to keep their child safe they needed him to have extra support in the water.
These exceptions happen all the time but not without a fight, which is hard for families to always fight to give there kids the same chances that other kids get without any hassle.
So I think it was totally unfair of this club to not let them in and I also think it’s a stupid rule, honestly.
Rachel,
This swimming issue is close to our hearts. Our daughter with cerebral palsy literally can only enjoy the pool in a $1 swim ring, one of the few pieces of adaptive equipment that is NOT $1000. So far, ALL the coast guard approved flotations devices are dangerous to her. They put her face right into the water. With this $1 item, I can stand in arm’s reach of our daughter and yet not touch her for 30 minutes. She loves this freedom. It is an activity we CAN enjoy as a family–and those are few. Despite using this flotation device at a Great Wolf Lodge once, we were refused on another trip due to the policy. We even demonstrated to the aquatics director what would happen when she donned the policy-allowed, Coast Guard approved, life vest versus the swim ring. I offered to sign a release of liability because I AM HER LIFE VEST. Again, they would not allow an exception. We were VERY polite, very respectful, very understanding of their concerns, but the aquatics director would not allow an exception. We followed up with a letter to the corporate headquarters. Consequently, we were allowed this exception on a subsequent trip. There was a new aquatics director who had had experience with special needs and told them that the CG approved device would definitely NOT work. Our next trip was absolutely delightful. We have run into this issue at the Y and at a camp she has attended.
I am so grateful for those people who do understand the need for critical and creative thinking, who understand that policies should guide and not rule.
Sincerely,
Lisa
What gets me I the attitude that these exceptions are somehow asking for perks. The truth is if that boy wore the swim vest, every single person in the club would know, “that’s the boy with autism.” It can be uncomfortable, but we do it anyway. Because we want our kids, not to have more, but to have the same opportunities for fun and success every kid deserves.
My question,as a parent of a couple of amazing young adults with exceptional needs, is where do I put my anger and frustration? Is it not enough that I battle to have things go as smoothly for my family as possible, preemptively planning EVERY step so that we can have the best time we can and still it’s MORE battle just to keep going. I now am disabled (or should I say alternatively-abled) with MS – so the battles are more draining. Why Do I need to keep doing this – I’m tired, I have been fighting for my kids, and the kids of MANY others now, but we’re still pushing, scratching and clawing up hill. And now – with the government choosing to decrease the programs that made life a tiche simpler…. how do I keep from giving up and moving to a land where no one can touch us, and living our lives out our way?? silly yes!!, but, perhaps – lets pool our money together, and buy an island……….
I find that it is the constant requirement to explain, why you need the accommodation which increases the fight mentality. We went to a community pool with high slides, and my son was too short for the activity, due to his diagnosis. Despite significant lack of muscles he is an avid swimmer. We had to wait for the Aquatics Director to return from lunch, then head over to the pool for an impromptu swim test, before he was allowed to use the slides. My quick explanation of his disability, his ability to communicate at a level far higher than his appearance would suggest was not enough. The extra 45 minute wait to do a fun activity was frustrating for all involved–though it did provide our friends a small peek into our world.