Being a special needs parent, what is life like?

In 2019/2020, 80,135 children in England had a statement or Education, Health and Care Plan (EHCP) had a primary SEN associated with learning disability or difficulty. https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/children-research-and-statistics . This does not include the many children who are yet to receive their statements and EHCP, so realistically this number could be considerably higher. 

 

Parents all over the world have different ideas on what makes a good parent. Some parents have very strict rules and regulations in place for their child, others may be a bit more relaxed. Just because what one parent thinks is correct for a child and their behaviour doesn’t always constitute as to what is absolutely right or wrong. 

 

For parents of those with SEN, it takes even longer to get the balance of right and wrong. On those days you roll with what the day brings and get through it as best as you can! We all have good days and bad days with your children. There are days they brighten up your day and others you just need to get out of the house! 

 

Having free time can be difficult in an SEN household and there are times where I have cancel things I am doing or change what I was doing to fit around that. I really dislike cancelling on people, however, I am extremely fortunate to have a supportive group of friends around me. My husband and I seem to have the flow down to a tee at the moment. I best not jinx that as I am sure something will be around the corner to knock us off balance. Need to maintain the positive vibes, it is all good at the moment. 

 

Every child with SEN is very different so what I may want someone to understand may not be what another SEN parent wants people to understand. 

 

A big one for me is that people think because you have carers in the house helping you that is time for you to have off. It really doesn’t work that way. Of course what they do is a massive help and contribution towards the running of my family household and I am extremely grateful for what they do for myself, my family and most importantly George. 

 

You have this sense of presence in your own home and you can’t ever probably relax. Just an example, if I need to tell one of my kids off for not doing their chores or my husband and I have an argument then I always feel there is a pair of ears listening. I struggle with this at times as I am quite a private person in my own home. Those four walls to protect you. There is constant thought of am I being judged, I shouldn’t raise my voice or damn I shouldn’t have said that in case I offend someone. 

 

It does give you the feeling that you are never on your own in your own home. I actually feel guilty for looking forward to those days when George goes off to respite. Respite is absolutely wonderful, if you of course have the right respite care which we thankfully do. 

 

We have an allocation of a certain amount of days/nights when he attends respite but even then we could get a phone call from them because someone has forgotten to pack something or George’s button has come out. 

 

Another problem that we encounter is that it not easy for us to go out for the day or go away for a night. I do envy families who look outside and think wow it is a lovely day lets head to the beach. Pack a few things and off you go. We have to look into every single detail to ensure that it is right for George. Holidays are extremely limited as well. What most places say are accessible and wheelchair friendly turn out to not be. 

 

Most companies and providers look at the fold down wheelchair and use that as a basis for what is wheelchair accessible. 

 

I can remember once booking a birthday party for my daughter at Jungle Mania in Welwyn Garden City. I knew that the sit down food bit at the end was upstairs so when I made the booking I asked if there was a lift available for a wheelchair. They said yes there was so I was happy and continued with the booking. 

 

We arrived, the kids had a great time playing and then it was off upstairs for food and cake. When we got to the lift, George’s big wheelchair could not fit in the lift. When I questioned this, the lady responded “well we weren’t expecting a wheelchair like that”. Fortunately, George was only young at the time and my husband and two other men were able to lift and carry him up and down the stairs in the wheelchair. That would be impossible now. Needless to say I am more thorough with my questions when making a booking. We live and learn! The issue most of the time is not the disability, it is the accessibility and that is where so many places go wrong. 

 

I know that my children would love to jump on a plane and go off somewhere exotic. They hear of where their friends are going or have been and it is only natural as children they would want that. I have made a pack with them this summer to utilise George’s respite days better and plan ahead more so that we can ensure on the days George is having fun at respite we can go off and do normal family activities. 

 

I know of several families that live such a recluse life because of the lifestyle requirement that is needed. Or some merely just have such a lack of support they don’t have time for anything else. Some local authorities really don’t provide much help at all and everything is a constant uphill battle. I think because George is so complex there isn’t really much the local authority can argue about in respect of what is needed to be provided in respect of his care. It is those families who have the children who look and appear the same as everyone else and therefore should be expected to fit in society as it is. 

 

I do appreciate that everyone in the world doesn’t have the time to read up on every single type of special need, because that is just unrealistic and probably near on impossible. May I suggest that if you know someone who has a loved one with special needs maybe say hello or ask how they are doing? A parent in the school playground or park maybe, as an example. 

 

Don’t be put off talking to them because you worry you may say the wrong thing or perhaps are unsure of what their child’s condition is. 

 

Also the next time you are walking around the shops or a supermarket and you see a parent really struggling with an overactive child. Don’t judge because that child may have autism and their parent will already be worrying enough about what people think. All of our kids have had tantrums and misbehaved in the past, so a simple comment such as “we have all been there” or just a simple smile will go a long way. 

 

 

“However difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up” -Stephen Hawking