*Phone Rings*……………………… that moment we all hate when we read the screen “School” calling.

Although I knew my boy was physically ok as he had arrived home just five minutes earlier, he had told me his day was fine.

– Hello?

– Hi Mrs Kaye it’s the pastoral manager from School, I just wanted to check that Cameron is ok as there was an incident today?

– Well he’s home and not said anything?

– Ok that’s fine – its just that he was verbally abused today; it wasn’t very nice to witness, and I just wanted to check in.  The other child has been suspended and we are dealing with this separately.

I waited until my husband got home so we could address the issue; but when we confronted Cameron, he said he didn’t remember, and he was fine.  He hadn’t told me as he didn’t want me to worry.

Now this is a stark contrast to a couple of issues in primary school, when he couldn’t wait to tell you who had done him wrong and the ins and outs of events.

It worried me that high school now is a totally different ball game, he doesn’t want me causing a fuss.

Through the power of Facebook I managed to get in touch with the boys mum, we had a conversation and we agreed to get the boys to meet to see what was the issue and try to defuse this at the beginning so that it did not escalate and get out of hand.

We took the lad a Dairy Milk peace offering, chocolate is a great healer after all and he apologised. He now talks to Cameron when he sees him in school.

The following week I noticed a bruise on Cameron’s arm and asked him how it had happened; he told me that someone was messing around and pushed him, that he had fallen into a bench.

My heart broke again, I asked him who it was, and he said that he wasn’t going to tell me because he doesn’t want me doing anything and making him meet this person like I did in the other instance.

I realised in that moment that I need to back off, as painful and hard as that is – I need to let him grow and I need to do this so that he will trust to tell me and share things with me.

I have promised that I will not take action unless he is severely hurt, that he needs to understand this is not ok, but I respect what he is asking me.

These teenage years will be hard and different, I have two brothers and know they were always getting into scrapes and saw them around school messing and having “banter” with other lads.

Cameron is a timid lad, he carries himself in a shy manor and he is open and someone confident about his autism.

A friend of mine attends Krav Maga training and told me there was a teen session at weekends.

Krav Maga is a self defence system which focuses on defusing real life situations; I booked a session and explained to Cameron that I think it would be beneficial as well as good exercise and a chance to make some new friends.

He loved it, and as a kid that’s not overly keen on expressing enthusiasm he was positive and excited:

“They taught us what to do if someone tries to steal your mobile phone and also what to do if someone pushes you”

I can’t fix everything – he needs to learn the way of the world we live in; I understand that, but I can certainly try my best as his mother to give him the skills and knowledge in life to try and help him succeed and be confident.

“Getting the wrong end of the stick”, “That’s not what I meant!”, “How did you get that from what I said?”, “You’re at that cinema?! I thought you meant the other one!”.

We’ve all been there, when the message you are trying to get across doesn’t quite “add up” for the other person due to a variety of possible factors.

It can be anything from funny to downright catastrophic to relationships.

Now imagine you’re a child with additional needs who struggles to communicate at the best of times.

I often think to myself how utterly infuriating that would be to not know how to portray the message you want to get across.

Or, if things are the other way round, for that child to not know what is being asked of them.

As a trained learning disability nurse, I was taught Makaton (a simplified version of British sign language) in university, although I never actually got to use this in practice as people often create their own “version” that is understood by a select few.

I have Multiple Sclerosis and for the past four years or so I have had “word finding” difficulties.

It sounds funny, but in reality is quite awful.

I can literally be mid sentence and just totally forget the word I am trying to say next, and often even lack the right way to try and explain what it is.

I can also be mid sentence and forget what I was saying completely, especially if I was distracted which, with triplets, happens a lot.

It’s amazing how much my fatigue impacts this as well and really has given me a tiny insight into how isolating it must be to have communication difficulties.

It makes me favour “written” communication eg. texts (or blogs!) at times, which doesn’t suit everyone because it obviously takes up more time, which is precious to us all.

I have a dear friend who also has a brain condition (idiopathic intracranial hypertension) and we often joke about how one of us will forget what we’re saying and the other is then distracted so won’t remember either!

As my husband says, you either laugh or cry!

When my son was around two years old his speech regressed.

He’d come on slowly anyway compared to his siblings but the words he had formed and used began to slip away.

Soon all he said was “mama” and “bye bye”. I noticed at that time he also became more withdrawn and “went along” with things rather than tried to direct play.

Thankfully, his Speech and language therapist (SLT) was really very good and got my husband and his mum onto a Makaton course.

We began watching a lot of “Mr. Tumble” to encourage Jacob to use Makaton to communicate his wants, needs and feelings.

It was soon second nature for us ALL to use Makaton to communicate simple things like to ask for more, to ask for a drink or something to eat, to say hello or goodbye etc.

One day Jacob just decided to speak again and dropped his Makaton completely (although he does enjoy trying to show his baby cousin how to do some signs now).

Jacob has spina bifida, hydrocephalus and epilepsy. We never did work out the real cause for his speech regression, and the lost year or so doesn’t seem to have impacted him much.

When he wasn’t communicating verbally, he was slightly more placid and just went with the flow.

Now he is very strong minded and will direct conversations, situations and play based on his own preferences.

I often think how his lack of ability to communicate with people made him just regress into himself and form his own little “bubble” (Covid free at that time of course!) to avoid having to engage with the world.

My child came out of that for whatever reason, but I am so aware there are many children who will never be able to communicate verbally.

It makes the little things so important eg. eye contact, reduction of distractions, choosing the right time when the child isn’t fatigued/sore/hungry and so on.

If I ever see children at clinics etc who are naturally quiet, I always try to smile at them.

If I have Jacob with me, there is often a returned smile from the parent with a mutual “you too?!” look.

If I am alone, I take the parent’s lead whether or not to stop and say hello. If Ben and Chloe see another child with disabilities apart from Jacob they will often say hello or wave without being prompted to.

How lovely it will be if the next generation grows up knowing that communication difficulties aren’t something to shy away from and sometimes a simple smile can go such a long way.

 

 

‘Ooh! I see you’re pampering him again.’

It’s a good job I was looking down, tucking a blanket around Freddie’s legs as he sat in his wheelchair, because the WTAF moment I experienced was written all over my face.

I could feel it.

I couldn’t quite believe she’s said it again – I’d explained about hypermobility and hypertonia the previous week.

It was a grey and drizzly Tuesday afternoon, and I was rushing to get Freddie from school to his swimming lesson, half-an-hour’s walk away.

Apart from being an important life skill, swimming has also proved to be beneficial for Freddie’s sense of balance.

But to ask him to walk for thirty minutes at the end of the school day and then swim would be asking too much of his body, so I would always bring the chair on Tuesdays, so I could push him there while he ate a snack, keeping warm under a blanket if necessary.

Maybe it was the addition of the blanket that had rattled her cage: we hadn’t needed one the week before, so I’d had no reason to explain that Freddie finds it difficult to regulate his own body temperature – a thing some people with Down’s Syndrome experience.

It didn’t occur to me at the time to ask if she thought that perhaps allowing my son to get wet and hypothermic would teach his body to govern its own temperature better, or perhaps that she too was pampering her child by putting them on reins so that they couldn’t run into the road – surely a little altercation with a Ford Fiesta would soon teach them to have a sense of danger.

It didn’t occur to me to say such a thing because her child clearly needs that extra help to keep them safe.

Giving a person what they need to keep them safe and well is NOT pampering them, even if the things they need are different to the things most other people need.

I am used to being on the receiving end of this kind of nonsense from random members of the public, but to hear it from another mum of a child with additional needs was especially galling.

I would’ve thought that she, of all people, would have understood that I cannot parent the extra chromosome out of my child any more than she can parent her child’s condition out of them.

We must simply do whatever we can to help our kids function in a world that is not organized with people like them in mind.

I wonder – would she have thought I was pampering him if I had bundled him into a nice, heated car for the journey to the pool? I doubt it.

There is something just glorious about Autumn. September, with its mistiness has given way to a very wet October here in Staffordshire.

It’s the kind of weather the Dude loves to go out in, with his rain hood down on his wheelchair obviously, where he can smile at everyone else getting drenched! Cold, grey days are perfect for cuddling up on the sofa with a film on, or for building a reading den in the sitting room using sofa cushions, blankets and anything else we can find.

These are the days made for stories, for splashing about in puddles and for enjoying being together. The trees around where we live are all in the process of putting on their final show before winter sets in, and even on the grimmest of mornings they are a stunning sight.

Covid has been all-consuming since March… strange to think that only a year ago we hadn’t even heard of it.

After spending 6 months doing everything possible to keep Sam protected and safe from the virus, it was devastating to then have him hospitalised with something else entirely. For us, the 6 months of lockdown was precious although extraordinarily difficult. Getting to spend so much time with our little boy was the greatest gift imaginable – although we were indeed counting down the days to his return to school, that sort of went by the wayside thanks to his existing health issues.

We’re optimistic that he may make it back in time for the Christmas parties?! By that point I suspect we’ll have gone totally, completely barking mad and will be exhausted beyond measure… but I wouldn’t have it any other way because it means our wonderful boy is still here.

But before then, we have Halloween to look forward to. While we don’t celebrate it as such, Sam adores the fun of pumpkin carving, baking, having his little pumpkin and ghost lights up and a tradition in our family; the watching of the film, Hocus Pocus. It is a great joy to me that my son shares my love of this wonderfully kooky film, much to his Dad’s despair!

If covid has taught us anything it should be that time together is the most precious of all commodities.

After a year which saw a new nephew born in the family, when we came closer than we’ve ever been before to losing our precious boy, I definitely want to work a bit less and to enjoy my time a whole lot more. Now, anyone for a pumpkin spiced latte?!

If you had told me a year ago that all of my son’s therapies would be done virtually, I probably would have felt some relief. I was surprised to discover, though, that teletherapy can be much more draining that in-person sessions were.

With at least five therapies a week, our family quickly realized that something had to give before the burnout got in the way.

The Power of the Cotreat

In the past, I assumed that therapists would rather not co-treat with one another, since a one-on-one session is probably more effective. If we’re exhausted, though, even a one-on-one session doesn’t give as much benefit. So, I created a monthly schedule of our availability and asked our therapy team to co-treat with one another whenever they could.

It was an adjustment at first, but the benefits, for us, have outweighed the flaws. Our therapists get to see what the other specialties work on and can bounce ideas off of each other. Plus, we reduce the amount of time we spend in front of the computer screen while still getting the benefits of a variety of different therapies.

Planning Ahead

One of the hardest adjustments with our switch to teletherapy was just having materials. Our therapists would often ask us if we had a certain toy nearby, and the state of my increasingly messy pandemic house was not the best for finding specific toys quickly.

So, I started sending an email to the therapy team on Sunday evenings to see if we could come up with a couple of activities ahead of time. This way, I could gather the necessary materials without wasting time in the session trying to find things or having to change the plan because I couldn’t dig something up.

Find a Common Thread

As we’ve all gotten used to doing a little more communication as far as planning ahead for teletherapy sessions, I recently started a new idea of having a theme for the week and passing it along to the therapists in my Sunday email. They don’t have to use the theme if they don’t want to, but it can provide a nice common element for my family as we practice things and do activities–or even just talk with each other–throughout the week.

My son is young and working on developing foundational language, so our themes are centered around core words like go, see, like, etc., but themes can also be centered around the time of year, favorite objects, and even people or places.

Of course, this idea could just feel like too much. The key for our family as far as anything goes with teletherapy is to give ourselves permission to take a step back. Some days, my little guy is too cranky to make a therapy session productive, so I just ask if we can have a grown-up conversation about strategies during the session and let him do his own thing. Some days, the session just isn’t working, so I ask if we can cut it a little short.

The operative word in those previous sentences is ASK. Your therapy team wants to make this work for your child and your family, but they can’t read your mind. Being an effective team means asking for what you want or need and helping each other help your child reach their goals and milestones.