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Everyone is a little bit autistic ..

Everyone is a little bit autistic, right? Wrong!

This seems to be a saying lots of people throw around when you are going through diagnosis or you are chatting to them about autism when they really aren’t all that clued in. Many people said it to me, and let me tell you it doesn’t bring comfort to anyone in fact it just wound me up greatly.

If your going to make such a big statement think it through properly. Here is an easier one for people to understand because autism is still a very confusing thing for many people, myself included and I have an autistic son.

Your friend tells you that they have had some back pain, are feeling moody and a headache. Would you tell them that maybe they are just a little bit pregnant? No you wouldn’t, because you are either pregnant or not. A bit like autism you are either autistic or not.

Autism isn’t just meeting a few of the diagnostic criteria its meeting them all.
To get a diagnosis of autism you have to be seen by many different professionals over a period of time who will then refer you on to the autism clinic if they all agree that you or your child has delays and struggles in all of the areas, not just one or two.

If you were to spend a week, even a day with someone who has autism you will be able to witness the struggles that they face with day-to-day tasks and activities.
Autism is a life long condition, it will have affected the person since a very young age and will do for the rest of their life.

So NO, not everyone is a ‘little bit autistic’ just like not everyone is a little bit pregnant when they experience a few of the symptoms once in a blue moon.

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2018 has gone too fast!

I hope 2019 goes slower than 2018, This year seems to have just flown by at an alarming rate and I’m not sure how I feel about it!
Adrian and myself have been married 5 years this January, Amellia is now 7 and Dylan is 4 next week!

They say time flies when your having fun, I think our time had flown because we have been so stressed and had so much going on! This year especially I feel like I haven’t had a moment to think or process anything that has been going on.

Amellia has changed to a new school which is absolutely incredible, and in a completely different league to her old one.

Dylan has started nursery with a very rough start but seems to be enjoying the morning class a lot more so is sorted for a little while.

Amellia got referred to a paediatrician who we will be seeing in February, and has been seeing lots of therapists throughout the year.

Dylan got his official diagnosis and is now starting to say words! This time last year he didn’t even attempt to say or make any meaningful noises so it is absolutely incredible. Never give up hope.

We added two little guinea pig buddies to our family who are totally adored by us all and have the quirkiest little personalities and enjoy squeaking at us every time the fridge is open.

Adrian & myself got out for one night together without the kids, drank too much and ended up forgetting half of the evening. What we can remember was a great time though and we thoroughly enjoyed.. next year if we get out together we will try and be more controlled with the drink. lol!

Amellia has shown us just how incredible she is at spelling and is making us super proud by achieving top marks every single week.

Dylan now has a huge love for Duplo and is constantly building towers bigger than himself and knocking them down.

To round it up, its been a very stressful year full with many high highs, and low lows. Hopefully 2019 will have a few more level moments for us to catch our breaths and we will be able to continue to do what is best for our kids and maybe if we are really lucky get two nights out together!

6

Understanding is impossible unless you have walked it yourself.

Having an autistic child is something that is impossible to understand unless you have walked it yourself.

The sleepless nights because they don’t sleep, and when they do your mind is going at maximum speed thinking of how to help them better tomorrow, what you can do that won’t cause a meltdown, if they will ever get a job, be able to live independently, cook, dress appropriately independently, tell you how they are, ask for what they want, say where hurts, if they will ever have a partner.. and many, many other things.

The worry when they won’t eat and have an extremely restrictive diet if they will be able to keep healthy on the select few things they eat. When they stop eating a certain food and you are left with even fewer foods, and they are losing weight and no one has ideas or provides you with help to get them eating more.

When they go into school in floods of tears clinging to you and you worry and stress through the day if they have settled, are they ok, will the school be honest with how they were, will they forgive and are they happy.

Buying new clothes entails turning the items inside out to see how they will feel to them and having to hunt out clothes that don’t have seams, and when they decide they like something and will wear it happily bulk buying them in every size to ensure that your child will go out with clothes and shoes on.

When you go somewhere they have enjoyed having your fingers tightly crossed so that nothing has changed and hoping it will be really quiet so that they can enjoy it and it won’t start a meltdown.

Will they ever make friends and have a proper friendship with even just one person. Be able to go to the cinema together, out for a walk, lunch, or even just have a conversation together.

How are you going to be able to cope with meltdowns when they are older if they are still lashing out, head butting, and how will I prevent them from self harming when they head butt the walls, hit themselves, scrab at their body, pull thier face..

Would someone else be looking after them better and providing them with better chances and helping them more than you are.

What happens if you end up in hospital and have to spend time there, how will they cope, who will look after them because no one knows them like you do and an even bigger worry.. what happens when you die, who will care for them like you do, love them and understand them like you.

The constant fight for help from services which are meant to want to help but show you the exact opposite.

The need to cuddle and protect them when they are sad, overloaded, having a meltdown but infact it just makes them worse and the only thing you can do is watch and ensure that they are safe and are not harming themselves.

Ignoring the stares, tuts and comments made when out in public and your child is having a meltdown and you can’t do anything to help them or stop it.

And the over whelming feeling of continuous guilt.

-WeeOhana

9

Leaps & Bounds of progress!

These past few months Dylan has been slowly progressing, but over the past month it seems to all be coming together. We have many words now which is absolutely incredible seeing as every time he has been seen by his pediatrican we kept getting reminded that not all autistic children talk and not to get our hopes up. He can request things like his iPad, juice etc, it’s amazing to see and I have got a lot of hope for the future now and I’m sure his language skills will continue to develop and maybe one day we will be able to have a conversation with us! It gives us a lot of hope and really lifts spirits.

In school they have started to use pecs to help him move from one place to the next, his anxiety is brought down a lot with these pictures and I am now running about like crazy taking pictures of everywhere we go so that I can use them at home with him too. I am hoping it will help when out and about with him so that we can keep him calm and hopefully enjoying what we are doing rather than worrying about what is to come next.

He is starting to try new foods, well he has licked a yogurt and they are trying to encourage him to try new things in school via pictures and are going to get me some to try at home with him, which is a really exciting prospect. Dylan’s eating has always been a worry for me, as much as the dietician says it is fine because he isn’t losing weight it cannot be healthy for him and is not ideal. I would love to be able to just pick him up something when out and about but unfortunately at this moment in time that isn’t really attainable as he doesn’t eat very much at all especially for dinners and lunch. Maybe one day he will eat a sandwich, now that would be incredible!

He has also started to interact a lot more with Amellia and the other children he knows. He will ask them for races using his makaton that he is starting to pick up and what is even more amazing is that the kids around us are so great too him. They understand him really well and it is so great to see them running around together and enjoying each other’s company. Something again I wasn’t sure I would ever get to experience with him.

Something he has started to really enjoy also is playing mario, he is learning how to control him and enjoys walking him around the map. Before he just used to hold the button and laugh as he fell off the edge, which is funny.. but finding something he really enjoys doing and playing is great!

Obviously he still has his hard times, but I totally adore him and he is simply wonderful. I will continue to encourage his growth and I truly believe give a child the tools and encouragement they need and they will progress in there own time!

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School Fun!

This past week has been all about getting into the swing of being up and ready early on and trying to work out the best time to leave to get to the schools at the correct time and still be able to park! We have got a hang of if now and are ready to rock this school year!

Amellia has been going in fantastically and is absolutely loving her new school! She told me that she wishes there was no weekend so that she could go to school everyday. On Monday she did have a little cry going in but the teacher came over and chatted to her about her coat and then took her by the hand and they headed in, I think after the weekend she was just thrown a bit, she really strives off a routine so once she gets into the swing of it again she will be grand.

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Her changing school has really been one of the best things I have ever done. My only negative about it is that I wish I had done it sooner. This school is providing her with so much more support and help than she ever received at her previous school. They are also keen to get everything else rolling to be able to provide her with even more help and support. She got 20/20 on her weekly spelling test and was over the moon, we are super proud of her and even more importantly she is really proud of herself and was so excited to tell everyone.

Dylan still isn’t really loving going into school, they have been trying putting him in a buggy to get him to the class as they can’t lift them Incase they were to trip and fall and cause the child to then get an injury which I completely understand. He too found it even harder on Monday and I reckon that is because he had been off for the two days and had got back used to that, but hopefully soon he will learn that school is great and he gets those two days off to be with me.

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He seems to be a bit hit and miss with how he settles once in the class. One day it only took him 15 minuets but then the next day again he was back up too taking a long time to settle so it really is a take each day as it comes type of thing he always comes out happy and smiling when he sees us so that makes it a lot easier, not sure I could leave him if he was coming out crying too!

Hope your little ones and you are settling back into the school routine ?

WeeOhana

6

I hope it gets easier..

Thursday was the first day for both my kiddies and they couldn’t have had more opposite experiences to the whole school thing.
Amellia absolutely loves her new school, on Friday morning she was dancing in my car with excitement before going in (which you may have seen on my insta story) and she has said that she wishes the weekend was only one day so she didn’t have to wait to go back to school. I just hope she continues to love her new school, they are offering her so much support and that is bound to help her settle and enjoy school more.

Dylans experience was the complete opposite. When we were walking down the hallway to his classroom he was fine and waited for his friend to catch up with him and I was starting to think it was going to go really well and he was going to love it, but as soon as we turned to walk through the door he would not go through and climbed up me as quick as possible while spontaneously exploding.
I carried him in and tried showing him some of the fun things they had out to play; sand, colouring, paint but nothing would settle him so they suggested putting him outside into the playground to see what he made of that. While they hurried him outside they told me to go. . as heart-breaking and as much as I really didn’t want to leave I couldn’t just ignore what they told me because in reality they have done this before and know what usually works best.
The parents then had a wee meeting to get to know some of the staff in the school and what they could do and provide for the children. After 45 minutes one of the classroom assistants came along to tell me that Dylan was settling for 5 minutes, remembering and looking for me and then settling again. After another 15 minutes they then brought the kids back to us and it was time to go home. As soon as he saw me he just kept repeating “mummys car” over and over again, he was more than ready to go home.

The next morning I woke up too carnage. Dylan had decided that doing a bit of poo art was the right thing to do, normally he shouts in the morning which wakes me up but he decided not to alert me and have a bit of a dirty protest and wake me with the smell. It was absolutely vile. I had my fingers crossed that the smell was going to be linked to something secured in his nappy but no such luck. I’m still scrubbing at the stains that refuse to budge! As soon as he saw me he started shouting “no school” over and over and over again.
I got him cleaned up, brought him downstairs and calmed him down. Amellia went to school dancing and singing then it was time to take him to school. After getting part of his uniform on I gave up, imagine wrestling with a alligator to put clothes on, Yeahh.. that’s why I gave up after he was decent.
The whole drive to the school he was going crazy in the back of the car, trying to undress, banging his head, hitting his legs etc.. I was waiting for him to fall asleep he was getting that worked up, but he didn’t.
Pulling into the carpark, walking to the class he was just going absolutely berserk. I had given myself a pep talk that it would be ok, they know what they are doing.. but it didn’t work.
They more or less had to remove him from me finger by finger. He was clinging on for dear life. It was absolutely horrendous. I just wanted to scoop him up and run away and never look back. I ended up in tears as they took him from me, it was such a horrible experience.
They came down to the room where we were meeting other members of staff after 40ish mins and said that he was doing the same as last time settling and then remembering again. This time at least when they brought him back to me he didn’t seem quiet as distressed but was busy shouting bye to everyone because he just wanted to be gone. He fell asleep as soon as he got into my car, which is only something he does when he is really worked up so that sort of summed up the day for me.

On Monday they are going to see how he gets on and have said that they will text/call me when they need me to pick him up. I’ll be sure to let you know how the next week goes.. at least on Monday I can sing to them “It’s my birthday, I can cry if I want too” so I wont look quite so bizarre crumbling into a heap on the ground in tears.. maybe that will make me look crazier actually.. oh well.

Wish me luck!

5

My child, my choice.

With Dylan starting school recently I have had a lot of people giving me their opinions on something which I feel strongly about and tell them before they even start with the back and forth.

My child, my choice.

I don’t agree with putting my child on a bus to and from schools. He’s three ffs. I wouldn’t put a neurotypical child on a bus even if it was a specific one for the school so I’m defiantly not putting my neurodivergent child on one.

People argue that it gives me more time, but I would rather do what is best for my child than what is best for me. I’m pretty sure that’s normal for parents.

I hear things like oh but everyone else does it.. I’m not a sheep thanks very much, I think for myself and what benefits my family the best. Also, just because everyone else does it does not mean it is right. Many things are questionable that “everyone’s does.

Not long till he starts nursery now, where did the time go!? They grow up far too fast and with them both in school now I know the years will fly by even faster 😦