Daily Challenges of Raising a Child With Special Needs

On a daily basis your challenges start with trying to get your child washed, dressed in the appropriate clothing and transitioned to school or whatever activity they are scheduled to be attending that day. All this is probably under time pressure as you are likely to also be trying to hold down a job and income that is dependent on you getting to work on time!

Sleepless nights

Often you are dragging yourself exhausted out of bed following a night of severely broken sleep. I remember at its worst it used to take at least 2 hours to settle my son to sleep, and then he would sleep for about an hour and a half before he woke up full of beans and I had to start again. My bed was the floor next to his bed for years because if I made the slightest sound trying to leave he would jump straight up and start again. Or, I was so tired I was afraid he would wake up and run downstairs and I wouldn’t hear him and he would do something dangerous (sensory seeking). I know all parents of newborns know this feeling of absolute exhaustion, but SEN parents are often in this mode for many years. And even when your child does sleep you are likely downstairs researching or cleaning or laying awake worrying.

Challenging morning routines

Every element of the morning routine challenges a sensory child.

Breakfast – Needing ‘sameness’ or sensitivity to the sight, sound, smell or touch of food, or the sensation in the mouth means the type of bread, or the type of spread, can be crucial. The way you cut the toast. Can the milk touch the cereal? Has the cereal manufacturer changed the artwork on the packet? – all of these seemingly small details and many more can suddenly lead to meltdown.

Washing and personal care. Cleaning teeth and brushing hair are such a huge issue with so many of our customers that we’ve dedicated individual blogs to each. Suffice to say, this can be a very difficult and distressing part of the day for both the child and their parent/s.

Getting dressed can be a huge drama. Often we have to wear clothes outside of the house that we wouldn’t choose to, given the option. For sensitive kids this can be an unbearable daily nightmare of sensations. From wiggly pants, lumpy toe seams on socks, itchy uniforms, too tight clothes or too flappy, material that just feels bad. Crinkly waterproof coats, thick heavy warm woolies. A hat that smells wrong, there are a myriad of challenges.

Outdoor weather season changes also cause issues. As well as the changing sensations of the weather itself we always struggled when the seasons changed – sleeve lengths and trousers lengths changed, shoes changed, coats changed. And it usually came at about the time we had just got him used to the previous season! Summer was always such a relief as there were less bad weather days, less clothes to wear.

Performing Daily Tasks

Many children with SEN struggle with any form of transition. So once you have all of the above done, even the trip from the door to the car is not straightforward. Sometimes the pressure of the transition sees the child undress or kick shoes, coat and bag off and the process has to start again, or everything gets kicked off in the car. Its easy to talk about how important it is to stay calm in these situations or we will make it worse, but…. Seriously? We all do the best we can. I was really fortunate with my son having a special needs school who were understanding. On days when he really couldn’t cope I could put him in the school taxi in his onesie and Crocs and they would use his first lesson as independence skills and focus on dressing. I don’t know how I would have stayed sane if I was trying to get him to mainstream on time every day without that support and understanding.

The importance of acceptance and doing what is best for your child

This brings us on to the importance of acceptance, support and understanding for us as the parents. Techniques that are recommended, particularly for Autism and PDA, put you at odds with old fashioned parenting techniques and often this gains you the additional pressures of disapproval from peers, partners, parents in law, professionals. For example, with my son the professional advice I was given was to completely ignore any behaviour I did not want to encourage, avert any dangers or disasters with the least drama possible, and give huge excited and energetic responses to the skills I wanted to see more of – but to his sibling and everyone else in the world that looked like he got to do whatever he wanted, and I was taking no notice. And then they saw me give him massive praise when he did something he should have been doing anyway. This increased the isolation I was feeling as a parent because I was often doing what I had been recommended to do, but surrounded by disapproval – particularly in waiting rooms or public spaces.

Feedback from school can also often be judgemental and unhelpful. There are many brilliant schools, but if you are not fortunate you might be getting regular notes about the lack of diversity in a lunchbox, or your child not arriving at school in full uniform, or tales of sensory seeking behaviours, or tales of avoidance, or questions about the necessity of a Chewigem or other strategy.

Threats of action for non-attendance, lateness or non-compliance to school uniform policies only exacerbate this and create huge stress for the parent who is already struggling to get the child in, and not getting any help. The lack of support and understanding can eventually lead to School phobia and avoidance. And this is where parents often lose one of their incomes because they just can’t get their child into a school setting, they don’t have access to appropriate child care, and they can’t get the assessments to get them a special setting. Heart-breaking.

Important of taking time for yourself

So, in amongst all of this it can be really, really hard to take time for yourself, but you need to. I’m really sorry to say that parenting a child with SEN does not suddenly get easier. Loving them is easy. Loving the systems and organisations that are supposed to be helping you is sadly not. In lieu of any major changes in government policy this is likely to remain true, so this means you are in a marathon with regular hurdles to jump and hills to climb, not a sprint.

My son is now 20 and we are still navigating adult services, education, health, housing, care. The Oxygen mask analogy is an old one, but it remains true. The fact that you are the one reading to the end of this blog means you are likely the crucial person in your family, holding everything together, and you cannot pour from an empty cup. There is a reason why we have to put the oxygen mask on ourselves first in the aeroplane safety briefing. It is because we can’t help everyone around us if we don’t look after ourselves first. This is your permission slip to acknowledge how hard you are working and give yourself a bit of TLC.

If you are struggling with where to start to get a diagnosis or support for your child visit this link for information: Support without a diagnosis | Disability charity Scope UK