Walk in Our Shoes

Having a child with special needs , puts additional pressure on any family as I have explained many times before. Many marriages do not survive the pressure, as the demands that that child place on its parents increase over time rather than decreasing, as is the case with most children. Everybody knows and understands that babies need 100% care – they require feeding ,changing and dressing but it is the normal expectation that from toddlers, they will start to feed themselves, become toilet trained and start to be able to dress themselves, so that they become less dependent on their parents for care as they develop more independence skills. But in many SEN cases, those self help skills do not develop and Joshua, for example, even at 18 still needs that same care that he needed when he was a baby.

It is expected in a family, that the children will start to contribute more to the household as they get older and that once they reach high school age,  that they will spend less time with their parents as friendships start to take on a bigger role in their lives. They will start to  want to stay out overnight with friends or to go on holiday with them as they move further away from their parental influence and ultimately, they will want to move out of the family home and set up in their own space. But our offspring tend to remain dependent, even as adults, which is why respite is so important; it gives parents time to themselves. to re-charge their batteries and to restore the balance of the family, which is usually skewed towards the needs of the SEN child. But it also gives the child or young adult, time away from his parents, where he can mix with his peers and engage in activities that he might not access within his family. I am certain that the fact that we have had monthly respite weekends ,apart from each other, for ten years now is one of the main factors that has kept our family together as Joshua has grown older, and arguably, more demanding.

Along the way, families have to make many sacrifices when putting the needs of their child first. Those could be relatively small sacrifices,  such as missing out on social events as there is a lack of suitable babysitters or limiting choices of family holiday to resorts or accommodation that suits the needs of the child . But more life-changing sacrifices are also made in the interests of the whole family, such as career moves. My husband and I have not been prevented from having jobs, alongside Joshua,  but we have both turned down career advancing opportunities because they would not have been viable while looking after him at home. In my experience, at least one of us has had to have flexibility at work to be able to attend the numerous daytime meetings and appointments or to be able to respond to the emergency calls from school or nursery to either fetch him home or to meet him at hospital, which has limited the scope for roles that involve a lot of travel.

I heard yesterday of a family whose son is struggling at present : getting ready for school and the journey to school has become overwhelming for him and he is resisting it daily with his Mum and even by calling on assistance from extended family, it is still proving to be a real struggle. She has fought a hard battle everyday before 9 am and often on very little sleep. Her husband, she told me yesterday, has handed in his notice to be able to support his son and wife better, as what they have been coping with on a  daily basis is untenable for any of them. He had no flexibility in his work and so the burden always fell to his wife. I am relieved for her and their son that he has made this decision, but beyond families who know this situation, who would truly understand the strain that working families are under and the choices that have to be made.

Given the number of appointments that have to be juggled and the full time chasing and complaining that has to happen in order to get what is needed, it is rare in my experience to find families where both parents manage to work, certainly full time. I use my Fridays-off for appointments where I can and for chasing calls and emailing. When that is not possible, I am very fortunate that I have some flexibility over my hours to enable me to juggle them to accommodate Joshua’s commitments, but I would have struggled over the last 18 years if I worked Monday to Friday , 9am to 5 pm. I am also permitted to make personal calls during my working day, as often the services that I have to chase, work the same hours as I do. But for those who are not blessed with that flexibility, a life on benefits may be their only choice.

Everybody realises that when they choose to have a baby, they will be making some personal sacrifices in the future. But please spare a thought for the challenging lives that many parents of children with special needs are facing behind the closed doors of their home. Most will not complain about it spontaneously as it is everyday life to them, but as you get to know them better, you begin to learn about the struggles that many are facing on a daily basis. So if they have become bolshy or weepy, or seem to be disorganised , are always late or forgetful, cut them some slack , as they may be dealing with untold horrors at home.

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