Special Wants or Special Needs?

Boy with autism on ferry by Someone's Mum

Our son was recently granted the mid-rate of disability living allowance. We have known that he qualifies for it for some time and yet when it came to applying for it…. we delayed. Not because we thought he didn’t meet the criteria but because we didn’t need the money while I was at work and, ultimately, it’s pretty hard to admit that your child is different. It’s hard to admit that yes, you do need help.

It doesn’t sit well. I know no other reality than the one in which I care for, would do anything for, my children.  And so, if we can meet his needs without help, we will.

I have had more reason than usual to consider the special requirements and allowances that my boy may need, or be entitled to, of late.

We recently travelled by ferry to France for our annual visit to my parents – a stressful and difficult experience for Biggest.  You can imagine how touched and relieved I was when Brittany Ferries contacted me to ask how they could help make the journey more comfortable for him.

Like many autistic children, Biggest cannot cope with waiting. The process of boarding the ferry involves many minutes, even hours, waiting in a stationary car; this is something that he simply cannot understand. If a car is moving, you are going somewhere. If a car is still, you are there and should get out. This idea is set in stone and we need every trick and piece of technology to stop him from simply screaming for the entire duration of the wait.

I explained this to the company and they said they would give him priority access to the lift. I queried this – Biggest struggles with steps and so a lift is handy, but not essential, as we can still carry him. The lady on the phone assured me that this would mean we were loaded onto the ferry much more quickly.

I breathed a sigh of relief. My anxiety eased a little. I would never have dreamed of asking for help. After all, I am sure many children find the wait difficult, although perhaps most would not have reactions quite as severe as or prolonged as my son’s. But asking for special treatment makes me uncomfortable. Someone else offering help is easier.

We arrived, late at night, at the dock. Things went smoothly. We were given a special sticker, waited in a line with other cars with special stickers, hazard lights flashing.

And we watched every other car loaded onto the ferry before us. As it turns out, the special sticker cars were the very, very last people to be loaded. We were waiting for nearly two hours just to get on. Once we boarded, the rooms close to the lift that we had been allocated were still being cleaned. We had to wait, in a tiny corridor, with dozens of other people, standing room only, for another twenty minutes.

Biggest had done well with the wait outside. Thanks to technology and music there were periods where his attention was taken and he stopped screaming. The wait in the corridor, with no technology or way to distract him, was the very last straw. By the time we got into our cabin he was wracked with sobs, unable to regulate his breathing. He could see the corridor was clear and so could not understand why we were standing still, why we were not going to our room like we had promised.

It took a long, long time – close to one am – before we could calm him enough for sleep. And the alarm for arrival went near five am.

The return journey, by day, had similar problems. The delay was with getting off this time. We were trapped in a stationary car, again for close to two hours- half of that in the car deck of the boat.

The day ferry has many more problems for Biggest.

It is so loud – there are flashing lights and loud entertainments to keep the other children occupied. There is nowhere quiet to go. There are no changing facilities big enough for him and I was forced to try to lie him down in places I would never choose to. My son is relatively able bodied, yet close to four and big for his age. Changing him away from home is becoming very difficult. Our discomfort, however, is nothing compared to what some disabled children and their parents have to endure. I encourage you to read this post and others by Ordinary Hopes which detail the struggles they go through every day, because many people feel the allowances they need to get out and about are too great.

I had further cause to question my own feelings about expecting people to make allowances for my son when I learned of the recent controversy surrounding a column in the Daily Mail written by Tess Stimson. I will not give the Mail’s deliberately provocative click-bait journalism more exposure by linking to it here – suffice to say Ms Stimson is of the opinion that we are too indulgent of disabled children in our society. Rainbows are too beautiful wrote this eloquent and kind post about it. No doubt Ms Stimson would have felt hard done by to have my hysterical son loaded onto a ferry before she was – after all, couldn’t I just control him and give him a stern word so that his caterwauling didn’t disturb the other people waiting?

At least Brittany Ferries’ heart was in the right place. If anyone from Brittany Ferries is reading, and genuinely wants to help autistic children on journeys with them, they might consider the following:

  • Minimising waiting times as much as possible for autistic children.
  • A quiet and comfortable room to retreat to when the sensory overload of the ferry becomes too much.
  • If that place could be enclosed to prevent children running off (something Biggest tried several times as the sensory problems both inside and out on deck were so difficult for him – the deck was easily accesible and dangerous for him.) so that parents can feel they are safer.

They might also consider reading some other posts of mine – The Meaning of a Meltdown and The Lions in the Living Room – to better understand how the experience of a ferry journey may feel to some autistic people.

It’s hard to ask for help. It’s hard to reconcile the idea that others may need to make allowances, accept discomfort themselves, to make life easier for your child. It doesn’t come easily. But you can choose to reach out to make life better, easier, for people who struggle in ways you cannot imagine, every day – or you can choose not to care.


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15 thoughts on “Special Wants or Special Needs?

    1. Thanks so much for commenting. It is hard – but sometimes when you are the main person fighting for them you know you have to!

  1. I reconise where your coming from here. My brother has similar issues with asking for help for his autistic son. As someone who works with adults with learning disabilites I encourage my brother to seek and accept all the help that is available out there.

  2. I went back to read the part about you being given a special boarding sticker, again, as I wasn’t sure I’d read it correctly. So you had a conversation with the Ferry company, who said you’d have priority boarding, but then made everybody with a priority boarding sticker wait until last to get on? Which seems absolutely awful-why didn’t they follow through on their promise to let you on quickly, when you’d explained why you needed to? I hope that they will take on board some of your posts, detailing why you needed to be made a priority, as I’m sure it’s quite easy to lack an understanding of these issues, until they’ve been explained eloquently, by somebody experiencing it first hand. I’ve read some of Ordinary Hopes posts on toilet and changing facilities for children, and she seems to be doing brilliantly in raising awareness of this, I’m sure your posts will be of huge help in understanding why certain things need to happen. I can understand your reluctance to ask for help-I’m pretty sure I’d be the same. But if it makes journeys, and your life easier, then I’m sure you will take the help. x

  3. That sounds like it was a very difficult trip for you and I can imagine how your son was feeling by the end of that. I might write about an experience I had with my oldest when he was 3 at an airport but my experience was very different, positive even. I read the post by Rainbows are too beautiful and while I understand why she apologized – we all do that from time to time, especially when it comes to our specials needs kids – I was disgusted by this Tess person thinking she even had the right to yell at someone else’s child because she assumed the parent wasn’t doing her job. I didn’t know that she had the opinion that society is being too indulgent to our special needs kids. It’s hard for us parents to ask and even accept help for our kids. I am much like you and I feel that my son shouldn’t be coddled. However, there is a difference between being coddled and getting help to cope with the world around them. I had a hard time upon his diagnosis at the age of 4 accepting help but over the years I have learned to accept it and work with those helping my son. He’s now in high school and is thriving. That’s not him being coddled though. That’s genuine people who really care enough and understand him enough to help him navigate this world. Thanks so much for your post! I really appreciate it. #bigpinklink

  4. Great post. It is so difficult to ask for help and it feels wrong to get priority over others (if you can call it that most of the time.) I think anyone who gets annoyed by other people who need extra assistance or allowances being given assistance, obviously has no real idea of hardship or difficult faced by people with disabilities or additional needs. Lucky them to never have had that experience. Sorry you had this experience. Hopefully it can be a bit better if things are taken on board next time. #bigpinklink

  5. “A quiet and comfortable room to retreat to when the sensory overload of the ferry becomes too much.” And “an enclosed place to prevent children running off” Isn’t that the cabin you had for your son? I don’t get it.

  6. Think I’ve missed something here… They offered to help but then made you wait the longest?! Our girl would have really struggled with that too. We shouldn’t be afraid to ask for help. It’s not like we’re asking for diamonds, it’s really only small adjustments we need. To board first is not being greedy, we just know it can make all the difference to our children. We tried the train through the channel tunnel once… our autistic girl screamed until she was sick! 😣

  7. Another fantastic and very descriptive post 🙂 Like that we can relate so much with our story, my 4 year old doesn’t cope very well at all with waiting and she will openly tell me this like yesterday: “Mummy I don’t do waiting!” We had a few examples of this only this week including waiting at the doctors and for a train. X

  8. Danielle that is simply unacceptable. I am currently in email discussions with school airport trying desperately to get better support for autistic passengers. There is an awful lot of work to do in making travelling better for autistic people. The best we are offered at the moment is support given to people with mobility issues. Some airports have been working with the autistic society on autism accreditation perhaps this is something that the ferry companies could adopt too. #SpectrumSunday

  9. I hate asking for help too, but I know that’s ridiculous really. Someone has to get on the ferry first, so why not you! We really shouldn’t worry about what other people think about that (although of course we do!)!

  10. It can be difficult to make the decision to ask for help at all and then devastating when that help is not as expected or not forthcoming at all. I can only imagine how difficult those ferry crossings would have been for you all. We’ve learned over the years to ask for any and every consideration for my son’s vision impairment and autism, although there are some things we haven’t applied for. For instance we haven’t applied for a disabled parking permit for him because we truly don’t think we need it. Plus we don’t want to have snide comments made to us by others who won’t understand why that accommodation is justified. But I am not backwards about asking for proper accommodations when it comes to his education and his ability to complete exams and tests. The hardest part is making others understand WHY this help is necessary – that it’s not a special want but in fact a special need x

  11. Sounds like a couple of very difficult trips! It’s great that companies – more and more – are making the effort to try to help but it would be so, so good if they’d truly listen when people tell them what’s needed. It’s really not okay to make an autistic child wait for so long.

    #SpectrumSunday (I know I’m a little…or a lot late.)

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