The Kids Are Alright!

I have entitled this post ‘The Kids are Alright’ because I am slightly frustrated about people suggesting that by my children being autistic, essentially they are not alright. And the worst part is, I get spoken to as though somehow ‘I’ am the one who thinks this.

“So what are your ‘concerns’?”

“They don’t look autistic.”

“He’ll be fine once he’s at school.”

“What behaviour does he exhibit? Oh, I wouldn’t worry about that!”

“Isn’t that just (x) year olds?”

I had all of this with my eldest…until he got older and his behaviours became more obvious to the outside world. I am now going through this with my youngest. It doesn’t get easier…and by that, I mean dealing with other people, including the ‘professionals’.

People compare the two children all the time…

“Oh, but the eldest is much worse!”

I have shared a few posts recently, explaining what the term ‘spectrum’ actually means because I am extremely fed up with having to explain to people that these two children experience overlaps in behaviour, but they experience autism in two very different ways.

“Isn’t the youngest just copying the older child?”

Aaaaargh. No. As I said, there are overlaps…but these two children couldn’t be more different. One may be more obvious than the other (currently) but that doesn’t make one more autistic than the other. They have their own struggles and difficulties.

As always, there is just TOO much to go into. As an example, my husband filmed my children this evening BOTH having meltdowns at the same time. My youngest screamed, threw things and was EXTREME! My eldest screamed and cried, but mainly ran around the room finding places to hide…under the table, in the gap between the fridge and the wall, under their tiny table and chairs, between the couch and wall…

I actually have a bruise on my head from where my youngest threw my phone at me last Friday, during a meltdown which started because he didn’t want me and his brother to build a Lego dinosaur. It took me to the ground…and I sobbed. My eldest asked if I wanted a hug and kiss to make it better. He is very sensitive and kind, but also very black and white. In his mind, the hug and kiss was all I needed, and everything was better now, despite the fact I was still sobbing and on the ground, clutching my head. My youngest paused, but would not look at me. He continued to shout, scream, kick and throw…just so angry and destructive. For his safety, and ours, I placed him in his bedroom where the meltdown continued, but I could supervise from a safe position.

My eldest kept pushing me earlier because I said he couldn’t play his video game. He was verbally rude and then headbutted me in the back. I got very angry and he immediately said sorry. I know he doesn’t want to hurt me, but it’s like much of the time, he just cannot handle any emotions (despite all the work we do on this) and feels compelled to be rude or physical.

He has vocal and physical tics that would absolutely meet the criteria for Tourette’s. He has so many…and sometimes these can be replaced by new ones. At the moment, everything is poo and wee.

“But that’s normal for all kids isn’t it?”

Yes, all kids go through that phase, and find it funny…but he is relentless. And it gets placed into every part of conversation and every day life so casually. Much of the time, he doesn’t even realise he’s doing it. It is very hard to discipline children who can’t acknowledge, or understand, what they are doing wrong.

Without repeating details I have shared several times before, my eldest is ASD, I believe PDA, and also has very obvious sensory processing issues. We believe he may also have Tourette’s and Dyspraxia.

My youngest is generally a dream child. He can follow instructions, ask questions and interact on a level my eldest never did. His gross motor is pretty good. He has a love for crashing toys, breaking things and making loud noises. He has a lot of compulsions, and has to follow through behaviours that he knows are wrong…he even says sorry in a worried voice immediately after exhibiting the behaviour as I think he genuinely feels bad…or knows he will be told off. Again, it is so tricky disciplining a child who just can’t help themselves. He has sensory difficulties, particularly with regard to noises and touch, or things against his skin. He hates plasters and cream…and if I need to apply anything to his skin, I have to be really sneaky, hold him down or wait for him to be asleep. If he catches me doing something like this, a meltdown is triggered. He cannot be reasoned with, for example to apply cream because it will help his eczema. He has some OCD behaviours as well. Tasks must be completed properly…and if he starts something…it must be finished.

For example, he is obsessed with wipes, and is very obsessive about which ones he uses. If he has a wipe in the room and you give him another, he will go mad until he gets the specific wipe he wants. If this is dirty and removed because it is not okay to use, he will meltdown, or at the very least have a tantrum. He drags out tasks and activities…and sometimes it feels like he is using delay tactics. At bedtime this evening, his wipe was not folded correctly over the side of his bed so he would not settle until this has been resolved. As he got out of the bed to tend to this matter, Daddy continued reading their bedtime story, and my youngest lost it. He comes across as very controlling, but there is a huge need for him to experience things in a certain way and/or routine. If you carry him over a step, he must go back and walk on that step before he can move on with his day. If you put his shoes away, he must take them back to the place he took them off, and put the shoes away himself, arranging them correctly. He requires a lot of preparation and input before completing absolutely anything.

“But your children sleep well. Don’t autistic people normally struggle to sleep?”

“But your children sometimes cope with spontaneity…so how can they be autistic?”

As a teacher, parent of autistic children, and autistic adult, I can tell you with authority that not all autistics struggle with the same things. Also, MY children were born to parents who really got them and put strategies in place from an early age. I am sick of out of date criteria being applied to autism, like it neatly fits into a checklist. My children still stand out for various reasons, but they are able to ‘fit in’ a lot better than they naturally would because of what we have put in. I am told that if you appear to be functioning or responding to strategies, you will not receive a diagnosis of autism on the NHS.

I say, define ‘functioning’ and ‘coping’. I am a woman in my 30s who ‘copes’ with a lot. I’ve studied and held down responsible jobs…but is there any consideration for just how hard life has been and what a struggle it is every day to exist in this world? Is there any consideration for the physical, emotional and mental toll this takes? I can put on a good show…because I’ve spent a lifetime perfecting it! And I am now teaching my children these skills. It won’t, however, change who they are and how they will feel as autistic people.

I still have an issue with the entire process, and general attitudes towards autism. Don’t see it as a burden…harness it. Don’t deny people their precious diagnosis because you are worried about funding. Help people to identify who they really are, putting interventions into place early. In fact, I don’t even fully agree with interventions! Let’s make the world more ‘neurodiverse friendly’. Why does education require students to sit still all day and regurgitate information like little robots? Why are children who struggle to do this viewed as ‘troublesome’ or unable?

We don’t need to waste money trying to cure autism, or work out how it came to be. We need to support people and create an environment where all people can thrive.

So much to tell you…

We have had a very eventful couple of days, and lots of family time together over Christmas and New Year. My husband and eldest child are back to work and school tomorrow and I feel a little sad. It has been so lovely though, so when I get a chance I’ll update you with what’s been going on. Well, some of it as there is so much to remember. I would love to know what you’ve been up to? Are you already back at work/school, or is that looming for you this week as well? Are you excited about getting back to some routine or are you feeling a little bit blue?

Precious Moments

Well, we continued snuggling and he fell asleep on me. Nothing will make me move…too precious!

He was so cute after the tantrum. Very loving and polite. Why can’t he see he gets so much more from behaving that way?

Mum Guilt

I am suffering from huge mum guilt this morning.

I put milk in my youngest’s Shreddies, as always, and he frowned and shouted at me saying no milk! He was very rude so I removed the bowl and sent him to the other room. When I felt he was ready, I gave him another chance. He continued to be rude so no more chances.

This triggered a tantrum which escalated into throwing and screaming for almost an hour. Every item he threw was confiscated.

My husband had to take my eldest to school as despite battling my youngest to get dressed, it was just impossible. Once I’d managed to forcibly get his clothes on, he just started taking them off.

You can’t help but wonder if you are hurting him in some way, both physically and emotionally.

I am so patient with my children. I label emotions and do everything I instinctively feel they need, as well as things I’ve learned through reading and advice from experts. But some days it feels like nothing works.

Today I am feeling a bit exhausted and frustrated, and just like I need a break. And just like I want to cry. I’m sure that will pass.

As I posted before, I was really looking forward to some 1:1 time with my youngest now my eldest is at school, but it hasn’t been all that enjoyable this week.

I know it’s a mega change and that could be affecting him, but selfishly I am feeling a little sorry for myself.

Of course the good outweighs the bad but I can’t help but question why every day has to be so hard; such a battle.

I feel guilty because although I am so grateful for my children, I am struggling a little with the challenges they pose.

People say I’m the best mum for them and most of the time I feel that’s true. But sometimes you just wonder why it can’t be easier. Just because I can deal with them doesn’t mean I always want to. That sounds awful I know, but it’s such a huge responsibility.

I am actually looking into preschool for one day a week for my youngest before his three year old funding comes into play. I have huge guilt over this for a few reasons. First of all, we are a one income family so I know it’s going to be hard financially. Secondly, although he likes to do his own thing and behaves well most of the time, once he is triggered he is so difficult, I don’t know if it’s fair to expect preschool to cope with him. Thirdly, although I know he really wants to go, I feel it is so mean of me to send him before he ‘needs’ to. I didn’t send my eldest until he was three and a half…and I was happy to keep him at home. Saying that, he was a different child and was totally not ready. But it makes me feel bad!

As I’m writing this, he is sat next to me and we are having the best snuggles. I will end the post here so I can enjoy the moment.

Sorry

I just wanted to apologise for all of the posts having only two separate dates on them. Before I had the blog on WordPress, I was posting on Facebook. I wanted to sync up all of the posts so far before creating new content.

I was advised that I should upgrade WordPress rather than use a free site. I will keep you posted.