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?

Pathological Demand Avoidance

As promised…

https://www.pdasociety.org.uk/what-is-PDA/about-pda

THIS is my son!

A family member said that my eldest was behaving in a particular way to be controlling. They were correct but I want to explain that this is not meant in the way most people take it.

He has a need to control. But, he is often not aware of what he is doing. He is not being consciously manipulative.

He is reactive to his environment and feelings, experiences compulsion, and controlling his world helps him feel stable and secure. He gets upset when he can’t because he doesn’t really have the understanding that other people will not, and should not, bend to his will. He is mainly focused on his own emotions and objectives.

Check out the link. It’s a great read!

Autism. It really is a spectrum!

I’m Sorry

I’ve just come downstairs after bed routine and wanted to share this…

After I had read the book we chose, my eldest looked at me and said sorry. I asked why and he mumbled something. I asked him to repeat it and his voice went quiet and shaky. He got emotional and I couldn’t hear all of the words, but I did hear him say I’m sorry for hitting you, and I love you.

I showered him with hugs and kisses and explained that I was sad he had hit me, but that I understood he finds it hard when he gets upset. I told him that I am so proud of him, that he is the sweetest, loveliest little boy and that we love him so much. Daddy said the same.

It reminded me of something I forgot to mention about the journey home. Once his meltdown had passed, he kept randomly hugging me and kissing my hand. He does this a lot. Like he is so overwhelmed with love, and just feels compelled to show it. It’s almost like he feels grateful you are still there. I will always be there! Always!

I know some people believe the children are being naughty and need to be punished through smacking, fear etc, but if you can ride out the meltdowns/difficult episodes with understanding and patience, it is so much better for all parties in the long run. That doesn’t take away how hard this is in the moment, and how much easier it is to say this than to do it.

If we were to be impatient, physical etc…I believe he would spend more time dwelling on this treatment rather than being able to see that we are there for him through thick and thin. And, despite the frustrations we face as adults in these scenarios, I believe it is so much harder for the child. They are helpless and powerless. Vulnerable. We need to model the behaviour we expect.

I am proud that my son feels secure and safe with me. I believe that giving him the space and time he needs is enabling him to explore his emotions and reflect on his actions. Obviously, from the beginning we have had to teach him the language etc, like with any child, but it is in there and he is drawing on everything he has learned.

I have to keep remembering that although life is tricky right now…it won’t always be this way. We are building the foundations for what is hopefully going to form a confident, successful young man, with whom we will share a special bond.

Struggling

So, I’m not going to lie…I am struggling this evening!

Horrendous weekend, behaviour wise. I can’t tell you why… all I can tell you is that after a pretty good spell with my eldest, he is clearly not coping.

It could be down to a number of things.

We have had, from one or both children: refusing to sit at the table, refusing food, blowing raspberries, spinning, dumping toys, crashing toys, being rough, trying to jump on beds/couch, dangerous behaviour, shouting when not getting their own way, screaming, meltdowns, hitting, self-harm, headbutting, avoidance, baby talk, rolling on the floor, impatience, trying to play on stairs, taking things from the fridge/freezer without asking, trying to wander off elsewhere in the house to do gosh knows what…the list goes on!

I have tried to deal with the behaviours as I always do but for the last three days, nothing seems to be working.

My eldest seems extremely anxious.

I have been doing lots of reading, as always, and have reached out to parents of SPD children. I was referred to a link which was initially suggested to help me with my youngest…but it is in fact my eldest. I am going to share this link in another post. It discusses PDA.

My eldest has an issue with getting wet, despite being obsessed with water…and I mean obsessed!

It was raining when I collected him. He had a huge meltdown…refused to walk and didn’t want to go in the pram because water was dripping from the cover. He wanted me to carry him home. I explained that I could not and gave him the option of pram or walking. I had to dry the pram in every area he perceived to be wet, or discoloured. We managed a few steps before he scraped his feet on the ground, making it impossible to push the pram. He tried to climb out of the pram and got stuck, which upset him greatly. When I took him out to walk, he wouldn’t put his feet to the ground because it was wet. He hung from me and almost knocked me over.

Then, some raindrops wet his trousers. Rather than stripping off, like he usually does, he had a huge meltdown…screaming, crying and pleading with me to take the wet away.

We discussed the purpose of shoes. I showed him the raindrops on my leggings and the bottom of my shoes. Nothing worked. He tried to climb me and I nearly dropped him onto the ground.

I pretended to dry the patches…and we discussed how they would dry…and that we could dry everything at home.

I lifted him up, kissed and cuddled him, and after some time and effort, managed to convince him to walk with me, pushing the pram. We had to keep pausing to discuss the rain and he kept crying about being wet.

“Please take me in the car next time, Mummy!”
“I’m afraid I can’t!”

His face showed real pain and tears were streaming down his red, patchy cheeks. I feel so torn between conflicting emotions…feeling frustrated and inconvenienced…also feeling so sorry for this little soul who cannot control his emotions and reactions. Ninety nine percent of the time, his needs outweigh my own and I take a deep breath, push aside my feelings and try everything I can possibly think of to make him feel happier. I wish he didn’t have to go through this all the time…that we didn’t have to experience this all the time.

Once we were home, I started dinner. Once we sat down to eat, another meltdown commenced. This time, the other child jumped on the bandwagon. I got hit in the face! My eldest has a talent for always striking the same place, every time! We removed them both, placing them somewhere safe, and just stared at each other…exhausted and exasperated. My husband asked, “What have we done to deserve this? Daily! We give them so much love. We try so hard to meet all of their needs. Having special children is hard…and I’m worn!”

At least we have each other. Although, it does cause tension at times, it’s nice to have that other human being who gets it…really gets it! Who lives it!

As I write this, the children are playing beautifully. Calm after the storm. Oh…spoke too soon…