Anika’s Blog

Starting School for Jonathan

This is an event that happens to all children and although some might be anxious, with those on the spectrum you never know just how they are going to react.

I went with Johnathan to see the new school we wanted him to attend and he was delighted at it and was happy and excited and wanted to go there. He wanted to be reassured that he would be happy and comfortable there. On my part, I wanted to see round the whole place because with Kevin and I both needing wheelchairs, I needed to know if we would fit or not. If we hadn’t, I would have been disappointed, but we did. Everything seemed delightful and I was pleasantly surprised that he was very enthusiastic about the whole idea of going.

Fast forward to a few days ago – oh my goodness!

What a difference! He is now so anxious about the whole thing. Poor boy ended up with what he thought was tummy pain and it turned out to be anxiety.

I knew he was an anxious child, but I didn’t realize it would get him to the place where it would begin impacting his little, young life. We are looking at new and different ways to help him cope with the idea of moving from a mix of school and nursery to an actual school where he will start in Primary 1 – basically the first year or whatever you call it (for all of you, unfortunate people, not living in Scotland).

So many children struggle to cope with the thought of the new school and what might happen there, and that’s ok.

It’s normal to worry about a new situation, a change in your life, or new circumstances. But it’s how you deal with it that’s important. And I recognize the fact Johnathan feels 10 times what other children feel so this stomach pain is real and a problem for him. Right now, I don’t know what the answer will be, but I know that we need to find one for him that will reassure him everything will be ok.

And yes, it is scary to a child who hates being OUT of routine to even begin the attempt to get his/her head around the concept that everything will be different. He’s already upset that Mummy doesn’t cut toast right so…we’ll see what transpires.

At the end of the day, he needs to adjust to this.

However, it is a massive change for him and we just need to work out the best way to handle it for him. I know we will do it, but sometimes it takes time to find the answer. And that’s ok.

So, with love and blessings, let me say farewell and I will see you next week.

Judging others

Do you notice when you judge others, or when others are judgemental of you?  Have you ever realised that sometimes you think people are judging you but find out later that actually they aren’t?

Judgement can be so insidious.  It can puff up in a minute and in your mind things are wrong or the person you are looking at is doing something wrong.  But actually, that doesn’t mean it is.  Obviously, I’m not saying if you see someone steal or kill or break the law, they are not criminals, they are, and justice needs to takes its course.

But when you make a quick judgement, are you right in doing so?  That person with the child that is just shouting out and annoying your nice quiet dinner – why can’t they just shut that child up?  And instantly, you have moved to judging someone rather than giving them a chance or looking at it in a compassionate way.

Compassion is always a good thing to have.  I’m not saying that you have to be compassionate to the extent that it affects your own health and wellbeing, because that is a dumb thing to do.  You need to take care of yourself first, your family second and outsiders third.

Honestly?  Compassion is a much needed quality in a world that is so quick to judge.  My son is on the spectrum and it has been quite a journey.  The temptation to NOT respond with compassion and understanding when he has been screaming solidly for over an hour is  not easy to resist.  I will admit that when you are tired or sore the last thing you want to do is try and be understanding of his needs.  But you have to be.  

Unfortunately it can be easy to judge another, but does it bring you any kindness, any happiness?  No.  What it does its make you feel guilty or embarrassed the next time you see that individual.  So what are you going to do?  Maybe you should give them the benefit of the doubt.  

Last night my husband and son were playing hide and seek with some of his toys and my son said he forgot where he had hidden one of them.  He has done that before and known where they were.  But my husband said to him that the reason he couldn’t remember where it was hidden was because he hid one toy in our bedroom and the other toy in the living room. and that was why.  So in the future, the toys would be hidden in the same room.

You can always find a reason to help a person and not judge them.  My point is that it is definitely the correct thing to do.  However, it doesn’t mean that you have to accept wrong behaviour or allow it to impact your family.  They have the right to be protected from something/someone you know is unsafe – for whatever reason.

So when you start to judge, stop and think for a minute as to what compassion could do for them or say to them at that moment in time.  But with understanding, compassion and care, you still have the responsibility to protect others.

Getting an autism diagnosis

Do you know how hard it is to get a diagnosis of autism?  People assume you just “want to have a diagnosis” or that you’re looking for a “yuppie” condition.  And the child or adult looks normal to other people so what’s the need for saying they have this condition?

Now, if you have cancer or arthritis or a heart condition or another gential condition, they wouldn’t tell you that you “just” wanted a name to this.  They would expect (as would you) that there would be help and support while you have the condition.  However, autism is not seen in this regard.

I will admit that autism doesn’t always require medication as other conditions do.  Now you could be fortunate NOT to have a child on the spectrum that has no sense of safety with themselves or ohers.  If they are like this, you may have to buy either larger pushchairs or an actual wheelchair for your child or adult.

And there are other compllications that can arise.  For example, people who are on the spectrum often don’t sleep well and this can be extremely disruptive to the family and other people they come into contact with.

So often there are needs that should be taken into consideration.  Once a diagnosis of autism is obtained you can get help for all these complications.  And even if they aare high functioning and have a seemingly good knowledge of language, mostly they are unable to understand or express their feelings, which negatively impacts their need for medical help.

I love my son dearly but he has complications that are invisible to you when you see him.  If you saw him, you would think everything is ok.  But I can tell you it isn’t and he has been able to access more help and supoort after his diagnosis than we could before.  And this makes a massive impact in our family life because it is so much easier with the support we have both received already and will need to access.

We have beem really blessed because Johnathan has been able to have a year split placement before going into school proper.  And this has actually meant that he will be able to enter a smaller normal school and I am so delighted!  Everyone wants their child to be able to go into normal educational process.  But not all parents have the opportunity to have this happen.

So many parents do not want to admit their child needs a diagnosis.  Maybe they don’t want to admit that their child has a problem.  Or maybe it’s because of the stigma that is attached to the condition.  There could also be other reasons for it.  Personally, I knew in his first week of life.  In my heart, although I didn’t want it to be true, I didn’t want it to be.  In fact, once he WAS diagnosed I struggled with it even though I had known it – much to my surprise.

Please, when you know of a parent whose child is going to be or has been diagnsed with autism, treat them with compassion and kindness.  You don’t know what they deal with in their daily lives and it is not an easy thing to either acknowledge or accept.  If you do want to know, let them talk.  Be there for them.  But please, whatever you do, don’t condemn them but listen to thing they would like to share with you.

Sensory Processing Disorder (SPD)

 

I knew the first day of the year was going to be difficult for my son.  He woke me in the morning and immediately went to the sofa and lay down quietly but with his legs constantly on the move.  He didn’t ask for the tv to be turned on, to do something on his iPad or to have breakfast.  For a boy who wants one at least of these and any combination, including them all, this was not normal behaviour.

The morning continued with a few hiccups along the way including a discussion about what I was wearing and what he wanted to take from home to play with while we were there.  In the end, we settled on the xylophone as he has been playing it at leat 3 to 4 times a day.

We got there and, as the custom generally is in Scotland (and especially with my in-laws) we were going to toast the new year.  First of all there was no drink out for him but one for everyone else and he went to choose a drink, then started to get upset when we asked him to wait to drink, thinking he wasn’t going to be be able to.  Quite frankly he didn’t want to know or care about the reason why – he wanted to drink it!

From that moment on, I knew it was going to be a long day with his grandparents.  They do try to understand him but there are some things they just don’t get –  SPD being one of them!

Johnathan started to play the xylophone between coming for cuddles or hitting himself on/off things.  Mary (his granny) was worried he would damage his joints but to me that wasn’t really an issue.  Yes he might hurt himself but what was so frantic in his body, mind or spirit that was forcing him to be this way?  I had no idea!

For the first time ever Johnathan used the bathroom in the house.  However he did have Daddy and Granny there with him.  We were all delighted he had gone somewhere other than home.

Kevin and I recognised he was seeking a variety of sensory experiences and we knew that as it was going to be a hard day we had to make it as easy for him as possible.  Lunch was food on a side table.  We both were saying that we often let him do this so food will get eaten.

The day limped on by with Johnathan varying between frantic and busy times with different types of sensory experiences to lying down on the bed or cuddling Daddy or myself.

Johnathan is always given his dinner before everyone else there on a low children’s table meant for toddlers.  This became a problem because Johnathan wanted to sit on one of our laps when he had finished his dinner but of course he couldn’t.

When the four of us are there Johnathan cannot sir in the sofa or comfy chairs because there are only 4 seats and eventually Kevin got him onto the bed listening to calming down music but he wanted Mummy and kept popping out to see if I had finished eating.

Mary likes to use this day to take photos of us with Johnathan but he just couldn’t cooperate.  He was antsy and literally couldn’t stay still.

When a child is suffering like this, there is no point in trying to get them to change their behaviour because it’s impossible for them.  The torment they are experiencing is crushing out every ability to do other than what the body, mind or spirit is dictating.

The best thing you can do is respond to each need as it emerges.  The person enduring this is unable to change their behaviour and cannot express to you or I the reason why at the time they experiencing these feelings and are out of control.

Johnathan has a wee nap in the car and so, feeling somewhat calmer for his nap was finally able to express to us what had actually caused the problem.

This is the reality that many parents go through, day in and day out when their child is on the spectrum.  Poor boy hadn’t felt in control of his body all day and knew it was making him do weird things but he was unable to change that behaviour.

These are the days when I really feel for him.  I know he is seeking a sensory experience to remove the feelings he has but his body cannot work out what to do or resolve the issue.

Anyone on the spectrum can suffer this and live a personal hell with no language to convey the turmoil inside them.  We are fortunate that our son is a high functioning autistic child and can talk but even he struggles badly on days like today.

Is it any wonder non- verbal autistic children lash out?  Would you be able to control yourself if you had a day like this?

Have you felt the echo yet?