What do Mothers Of children with special needs wish we knew?

I’m a mother of 5 children, 2 of them with special needs. I didn’t think I was different from other mothers. It took a text from my daughter’s school to make me realise that maybe I was a bit.

We’ve all had those texts or letters. The warning kind. Succinct. To the point. Blunt even. Bulk SMS.

‘Your attendance percentage for the month of December was 66% which is below the required amount. Your average attendance for the year so far is 93%. Please ensure there is an improvement in your attendance.’

I received just such a message for my PCD teen. I was fine until I read the last line. ‘Please ensure there is an improvement in your attendance.’

I cried tears of sadness, frustration and eventually anger. I was sad when I remembered how U3, my PCD teen, lay in bed, feverish and weak. Unable to move or even eat  properly for a week. That was the week she missed school. I was frustrated when I remembered that I had filled a form and specifically mentioned her medical condition, and the fact she might miss days of tuition due to illness. How could they forget?! And I was angry at what I perceived to be a callous statement at the end of an unfeeling text message. How could she ‘ensure’ an improvement in attendance? How could she ‘ensure’ she would not have another infection that would knock her for six?

I immediately sent back a text stating my grievances. The school was contrite. They’d meant no harm. They apologised. And they said they would do better. They would remember that we are a special case.

To be honest I was a bit surprised at my own vehement reactions to a simple text. Turns out, I am sensitive to some things.

I wondered then at what other things mums who have special children are sensitive about. I communicated with three mums, and amalgamated their responses. It’s sobering reading.  

1. The first thing the mums said was that they wished everyone would acknowledge their child. A child may be non-verbal, or in a wheelchair, or both! A simple hello is fine. The mums felt hurt when people walked by the child as if the child didn’t exist.  Yet just simply acknowledging the child is a very easy thing to do. Make eye contact, smile and say a simple greeting and the child’s name. This child exists. They have a place in this world. The least we can do is acknowledge that. We may forget that a child has a disability especially if it’s a hidden disability. But the parent does not have that ‘luxury’. They always remember, naturally. And they always worry. That’s not to say that parents of able children do not worry about their kids, but we have to try to empathise with the different level of fears that the parents of special kids are dealing with.

The second thing mums said to me was that they disliked it when their child was excluded, be it from play with other kids or invites to parties and gatherings. Calleen Petersen from anordinarymom.site made a very powerful statement. ‘A child with disabilities often spends hours being taught how to interact with others. But why don’t we spend time teaching those without disabilities how to interact with them?’

It is our duty to educate our children to be inclusive and kind. We must teach them not to point and whisper. We must teach them to invite to play those who they see alone. We must teach them to speak up when they hear cruel words being directed to a disabled person. All this builds a sense of community. Lend your voice to the voiceless. Stand in solidarity with those who may not even be able to verbally thank you.

3. Be courteous. Give up your place in the queue to a person who is in a wheelchair or who has a child in a wheelchair. Don’t tut when others give up their place in the queue and now you’re two spaces behind instead of one. And never EVER park in a disabled parking spot if you’re not disabled. Those spaces are wider to make space for loading and unloading a wheelchair and they are closer to the doors or entrances.

4. If you’re inviting a person with a wheelchair to a gathering at your house, ensure there is a safe space to place the wheelchair. If possible, make available a spot for parking that is close to the entrance so that there is ease afforded to the wheelchair users. If possible, provide a private place for changing nappies. And make sure that you do extend invitations. Don’t assume that those with children in wheelchairs will not attend. Give them the option. Conversely, if you do extend invitations and the parents and children with special needs aren’t able to attend, don’t take offence. There may be several reasons why they can’t attend your gathering. It’s not personal. Small courtesies are highly appreciated.

The mums I spoke to told me that they didn’t mind being asked genuine questions about their children. But they did say that there is a time and a place for such questions. If there is a social gathering and there are lots of people around chatting – that’s not the right place for personal questions. Also, unless you’re a medical expert, don’t be nosy and ask probing questions that delve into the medical conditions a child might have! A parent will share what they are comfortable with sharing. Don’t push for more.

Parents with children who have special needs have a completely different routine. Sometimes they have no routine. They are up at all hours caring for their children. They might catch a quick nap at 10 am when their child is at rest. It doesn’t help when you say things like, ‘Oh you’re still asleep? I’ve been up for ages.’ Parents may also be quiet and withdrawn because they are worried or tired. They may not want to chat much or meet up or attend social gatherings. It’s nothing personal and shouldn’t be taken as such.

Another grave concern that parents of children with special needs have is infection control. Some children have weakened immune systems, and a simple common cold that you and I could fight off without the need for antibiotics might lead the immune-compromised child to be very poorly or even hospitalised. If we are sick, it is common sense that we should not visit the home of an unwell child. Germs spread very easily. If a parent of a child tells us something as simple as – ‘Please wash your hands.’ Or ‘Please remove your shoes before you enter the house.’ – then we should comply with the request. These are not attacks, rather they are genuine fears from parents who have to deal with the aftermath of negligence – an extremely sick child. We should respect these concerns and know that none of them are personal. And it goes without saying that we should never smoke in the home of such a child. This doesn’t even need to be mentioned!

If we have special children in our family then it’s imperative that we are involved in their lives. Grandparents should go to school meeting and fun days. Other family members can offer help in different ways. The best bet is to just ask the parents – what can I do? They may not need anything, but the fact you asked is enough sometimes.

9. The biggest thing is to remember that we should never underestimate a child with special needs just because they are different from us. They are worthy of love. They are a gift to their parents. We should celebrate them, accept them and love them. It’s their world too. 

If you made it this far, thank you for reading! Please consider sharing this post on your media platforms. This post was part of a talk I gave for Rare Diseases Day 2020. #rarediseasesday #shareyourrare



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