Walk a Mile in Their Shoes

There is no doubt that having a child with special needs in the family, places additional pressure on a marriage or partnership. I believe that one in 3 marriages end in divorce, but I am not sure what that same statistic is when the family unit contains a child with special needs, but it may well be higher. There were many single parents at Joshua’s special school and I have total admiration for them :They have to do all of the daily care routines themselves, they have no adult company when the children have gone to bed and they may have to face the difficult decisions about their child’s health ,or attend uncomfortable school meetings, on their own. They may have to organise challenging regular access for a reluctant child; for an autistic child that needs stability and consistency, now his, or her, parents are living apart and in unfamiliar homes which are not acceptable to the child. All of this adds an extra difficult dimension to what is already a difficult job, raising and caring a child with special needs.

I would not be telling the truth if I told you that having Joshua has not put our marriage under pressure over the years, but I am grateful that we are still a team after 26 years marriage. From the minute that he was born, Joshua has become the number one priority in our family and that often comes at the expense of either partner. Throughout his life, and still today at 21, Joshua rarely sleeps through the night and 9.5 times out of 10, in the wee small hours, he ends up in bed with me. He will need to be put back in bed, several times at bedtime, as he jumps out of bed and bangs the door on the landing up to ten times, before settling down to sleep, so if we are watching a film together, it has to be paused endlessly while one of us encourages him back to bed and urges him to go to sleep. When he was younger, I used to snuggle him back to sleep and would inevitably fall asleep next to him, missing the whole evening. Joshua requires full personal care and so that means he takes precedence in the morning and evening when he needs washing, dressing, changing and feeding.

It is normal for a Dad to feel ‘left out’ when a new baby comes home, as Mum is devoted to the care of her new baby. But it is the natural order of things that this baby becomes a toddler and then a child, then a teenager then flees the nest, gaining more and more independence as they grow older. As a teenager, I have heard the complaint that they treat home like a hotel and are rarely there, other to eat and sleep. So the parents have the opportunity to get used to the feeling of them having left home, before it actually happens. If the offspring go to university, again this is a trial run as the college holidays are so long, that students tend to be back home for half of the year anyway. But when your child has special needs, they do not necessarily gain that independence from their parents : Joshua requires virtually the same level of care now at 21, that he did when he was newborn, only now he sleeps less and his is much bigger and heavier!

Respite from caring responsibilities are a necessary way to find time for yourself and for you as a couple too. When Joshua was at school, that gave a 6 hour window when he was in somebody else’s care but both me and my husband were working then, so did not really get the benefit. But now that we have stopped work, daycare gives us some much needed time for ourselves and for each other. Again we have a 6 hour window, 2 hours of which are taken up with driving to and from daycare, but the remaining four hours seem like a real luxury after the 24/7 caring that I was doing for the last two years of the pandemic. We can treat ourselves to lunch out together and we have both seen friends separately, but it also gives us time to get mundane jobs done, which are so much more easily completed without having Joshua in tow. So tomorrow for instance we plan to clear out and demolish an old farm building together and have a bonfire, while Joshua is being cared for elsewhere!

We have a meeting on Wednesday, Joshua’s Care Review, with the social worker and with the various professionals who are involved in his life. This will be the first one of these that we have had with him as an adult, as previously Annual Reviews took place at school and then none happened during the 2 years of the pandemic. Even now, tomorrow’s meeting will be held on Teams , rather than face to face, so that will be interesting. Prior to the pandemic, Joshua attended respite one weekend in every four and we would all enjoy this prolonged period of freedom and independence from each other. Latterly we were even brave enough to go for weekends away together as a couple, both locally and then even abroad. But Joshua’s last respite weekend was in February 2020 and none are imminent, as far as I know, as there is still a shortage of social care staff. These weekends were a great boon to allowing us to just be a ‘normal’ couple again and to refresh ourselves, ready for getting Joshua home again on Monday. I hope that tomorrow’s meeting might give us hope that that facility will soon become available to us again.

So spare a thought for the struggling single parents and the struggling couples who are devoting their lives to the care of their children with special needs. Until you have walked a mile in their shoes, it is safe to say that you are unlikely to know, or appreciate, what they are going through on a daily basis.

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