Mother’s Day With Added Effort

As I write this, it will be Mother’s Day tomorrow in the UK. Today Small and his Dad went shopping to choose me a gift and it got me thinking.

Being in a crowded shop is incredibly stressful and tiring for Small. The lights are too bright, people are jostling him and making noise, the tannoy hurts his ears, there are too many sights and sounds and smells.

As a result, Small avoids shops whenever possible. On a good day he might come in and sit on my lap in my wheelchair, or poke around a charity shop, but usually the suggestion that he come shopping is met with panic and tears. We don’t force him, because I believe that is counterproductive. I know that he can do it when he is in the right frame of mind and the motivation is great enough, but why cause such upset when I could just order online?

The reason I mention this is because it means even more to me that he went into at least one shop to choose gifts for me, because I know how hard it would have been for him. The fact that he gritted his teeth and tolerated all that sensory input just for me, is truly amazing.

I am a very lucky mum.

Trust…

Over the last few months of 2014, Small became reluctant to go to meet ups or to leave the house. He wasn’t enthused by the idea of playdates, walks to the park or home ed groups. He did lots of crafts, building robots and doing science experiments. Despite a little cabin fever on my part, we tried to honour his need to hibernate.

It’s now February, and he has suddenly developed a desire to be social outside of immediate family. Last week we were out almost every day and this coming week looks like it will be just as busy. I am acting as his social secretary, trying to fit in playdates with all the friends he wants to see and still leave days free for his favourite home ed meets.

It has reminded me that Small knows what he needs, whether it is to stay at home, to be out everyday or a combination of the two.

I should have known. Like everything else in autonomous education it comes back to trust. Trust that he knows what he needs, and trust that it will all work out ok in the end.

On The Second Day of Christmas

We ended up starting our 2nd of December crafts on the night of the 1st of December.

Small was really struggling – he is a bit poorly and was tired but couldn’t sleep, so he got very upset – and he needed the distraction, so out came the paper chain kit. We had some upsetting conversations about being unhappy and wanting to be ‘normal’. It’s very hard to hear your six year old say that he feels sad all the time, but I tried to empathise and validate his feelings whilst reminding him that his dad and I love him unconditionally.

This year he has the coordination and fine motor control to form the chains himself and he took great delight in hanging them on the tree. He calmed down a lot and fell asleep next to me.

After  a little sleep overnight I broke out the coloured paper and double sided tape and we made more decorations. I saw something similar on Pinterest but I didn’t follow any instructions, just cut strips of paper into different lengths and stuck them together.

What Christmas decorations do you like to make with your children?

Starting to Deal With Sensory Integration Disorder

Small’s Occupational Therapist agrees that his sensory integration disorder is severely impacting all areas of his life, possibly to a greater extent than we had realised. Part of supporting him to manage it himself as he gets older is for me to be very aware of when he shows signs of being over stimulated and to implement different strategies until we find what helps calm him.

This evening, Small desperately wanted me to unlock some levels on a WiiU game but I could see that he was showing signs of being overwhelmed – his voice got louder, he was jumping and flapping, starting to tend towards aggression. I tentatively suggested that he could have his weighted blanket over his lap while he sat on the sofa, expecting him to refuse, but he agreed. And it helped. And he realised that it helped!

However he wanted to continue using it while he moved around, which is obviously not practical. I have seen weighted vests but, as with most sensory tools, they are ridiculously expensive. I’m going to investigate making one myself, like I did with his weighted blanket.

The other tool that has been brilliant at calming him from a over-stimulated state is the trapeze we set up, which hangs from a chin up bar in a doorway. Our Occupational Therapist suggested a nest swing or hammock swing, which I have been lusting over in Ikea for a long time, but living in a rented house means we can’t screw it into the beams, so I have ordered a small hammock and I am going to perform some sort of bodge job to attach it to a chin up bar too.

We already have plans to turn Small’s bedroom into a sensory area with bubble tubes and glowing lights, but it will need to be gradual as any big changes are stressful for him.

For now we need to focus on this aspect of his life, which may mean that our house looks random and untidy because it is filled with sensory equipment. But it is a price we will willingly pay for Small’s wellbeing.

Respectful Parenting With Special Needs

Almost without fail, when reading Facebook pages about positive or respectful parenting, I will see a comment stating that these techniques cannot be applied to children with special needs. But why not?

I have a wonderful circle of families around me (both locally and online) who parent gently and among them are children with additional needs, from autism and sensory disorders to rare genetic conditions, Down Syndrome and cerebral palsy. My own son has sensory integration issues stemming from ASD. None of us are perfect but we all share the belief that children should be treated as people rather than inconveniences whether they have special needs or not, because a disability does not make a child less deserving of respect.

In my experience with my son’s ASD I have come to believe that it is incredibly important that I give him as much control over his life as I can and, when I set boundaries, to make them clear and explain the logic behind them. The world can be an overwhelming place to a child with sensory difficulties and autism means that social cues are like a foreign language, difficult to comprehend and reciprocate. These children need their parents to be a safe harbour, where they feel heard and understood, their feelings validated and supported.

This Boy is Amazing

Rollercoaster days

Life with a child on the autism spectrum is a roller coaster. Sometimes it feels like a blessing but sometimes it seems too much to cope with.

But we cope – every family does, in their own way. For us it appears we have a few weeks of simply surviving, getting through the meltdowns and sleepless nights that would rival a newborn baby, then suddenly Small has a day that reminds us how wonderful life can be.

It’s nothing that would be obvious to an outsider. Maybe he gives me a quick kiss, perhaps he falls asleep a little easier or tries to dress himself. Today he was cooperative with toileting and cheerfully helped me sweep the floor. We cuddled in my chair and played Wii games and Snap. Insignificant things to some, but enough to feel we have had an easy day… a day that will give us energy and fire to get through the tougher times.

Today was a good day.

Change

Do not tell me…

Do not tell me that autism means my child is ‘broken’.

Do not feel sorry for us. Our family may be chaotic but we have more happiness than a lot of people.

Do not tell me that autism does not exist, or that he is just being naughty.

Do not tell me that a week with you would have him out of nappies and eating whatever food is put in front of him.

Do not tell me that he just needs more exercise, attention or love.

I have heard it all before, a hundred times over.

Do offer a smile.

Do be a friend.

Do include him.

If you want to help, ask what you can do. It’s likely that we are managing, but the thought will be appreciated and we will feel supported. If we could use the help, we will feel able to talk openly to you.

We are a family, just like you. We just have a little extra chaos added.

Melatonin

A while ago it was suggested that we start Small on medicine to help with his sleep disorder, and our initial reaction was that it felt wrong to drug our child to sleep. That we should just cope.

And we did. We survived.

We have spent the last years arranging our lives around his chaotic sleeping times… getting no sunlight at all for weeks on end… missing appointments… trying to be an enthusiastic parent at 3am… comforting Small when he was upset at sleeping through exciting activities and days out with friends.

We started to wonder whether the stress of this enforced lifestyle was having more of a negative effect than medication would do, so we spoke to a sleep consultant and saw a child development specialist.

Last night we gave Small the hormone that his body does not produce as it should. He slept all night and this morning he announced that he felt great.

It is a hard decision to make, to give your child medication potentially for the long term. But it is far, far harder to watch your child struggle without it.