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!

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 😦

8

Regression :(

Dylan has had a rather large & pretty upsetting regression recently.
He is finding anything outside of the security of his home a huge challenge.
Things Dylan used to really enjoy have become nearly impossible for him, and the hard thing is we have no idea what started this regression and what has made him so scared of being outside of the home.

IMG_8529

Parks have always been a little bit of a struggle for Dylan, but he used to be able to last about 15 minutes before he would start showing signs of distress and the need to leave, and this was ok. We could generally distract him and get him to stay for about 20 minutes which then meant Amellia got a nice amount of time to play too, but now its as soon as you even go into the car park.
You pull into the car park and he can see the park and this is a park that he has been to many times before so it isn’t a new environment that is setting him off and he just starts screaming and lashing around in his car seat. When you then take him out and set him down he is inconsolable, and because he doesn’t have any understanding to what you are saying to him it feels like an impossible task to help him understand that the park is fun, safe and you can enjoy it.
I can understand how this must sound crazy to most parents, I mean a child not enjoying a park it even seems crazy too me, how can my child not enjoy the park?
I have to teach my child that the park is a fun and safe place, that i itsn’t somewhere to be feared.
What makes it really hard for me to understand and to see is that if you walk to a park when he is in his pram he is trying to clamber out of his pram as is desperate to get out and play but as soon as his feet touch the ground when you get him out he just crumbles and cannot handle it.

Somewhere else that Dylan used to really enjoy going to is a little Mums & Tots that I go to that is just for children with additional needs. He used to love it, would run in most times sometimes he would have a little fuss but then would head straight to the ball pool and would spend the time happily pottering about doing whatever he fancied.
As of recent this is not the case at all. As soon as you pull into the car park he is screaming in the car and is not happy. I settle him down by letting him into the front of the car and he then pushes all the buttons and we head in.. as soon as the doors open he is straight on the floor screaming and giving off.. you would think I had taken him to a torture chamber and not a place he used to love.
Fortunately I don’t feel just as judged here as I would anywhere else. Many here understand and are very supportive, and I really think key to this all is making friends and chatting to people who are in the same situation as it really is an extremely hard one to understand unless you are in it too.

His favourite place to go used to be up to the horse where he loved getting involved with mucking out, making up the feed and just being around the horses, now he will just lay on the floor screaming and it is really horrible to watch, somewhere he used to really love and is so eager to get out of the car but as soon as he does something just stops him from being able to enjoy it.

I just wish he could tell me in some way what is going on, what is stopping him from enjoying these things and how to help because right now I feel pretty useless.

-WeeOhana

2

Getting Dylan’s Education Plan Underway

We finally have started the ball rolling for getting Dylan sorted with a school.
The education board came out and asked us many questions though this wasn’t after me phoning them and gently reminding them that they are meant to have seen a child within 22 days of accepting them.
A lovely and friendly lady came over to meet Dylan and chat all about him so that she could get a full and informed report to help him get through all the stages quickly and hopefully with as little fighting as possible.IMG_0870.jpg

Like the majority of Dylan’s appointments it was pretty tough. You find that you are always talking about what he can’t do and what he should be doing, They ask you if he can do certain things and 9 times out of 10 its a “nope he can’t do that.” I know that this is to get him the help that he needs and to ensure that he gets it but as a parent it is a really tough thing to do.

I was hoping that this appointment would lift a whole load of stress off my shoulders and settle down a whole heap of the worry I was having unfortunately it did not. I understand that the lady who came out to us doesn’t want to give false hope but she said that she couldn’t tell us either way if Dylan would get through the Stages but then also went on to tell us that it isn’t often that she goes out to see children as young as Dylan and it is so obvious to her that they are autistic.
When she left I was so confused. How could she say such contradicting things, though she recently called to let us know that he has got through stage three easily and her boss has told her that she thinks Dylan will get up to Stage five without any questions. Fingers crossed it all goes how it is meant too, and then we can start the fight to get a school close to us and that we think will suit him best.

IMG_0848.jpg

She did though also tell me on the phone that her boss thinks he will be best suited to a school for children with severe learning difficulties and we have been told this by several people recently which has been pretty hard to take.
I hadn’t really spent much time thinking about this but it was a rather heavy thing to take and made it clear to me just how hard he does find life, how challenging his behaviour really is and just how much I do for him.

As his mum I do everything for him daily and just get on with it, I don’t put much thought into how much extra support I give him compared to other children his age, but when I think about it, and see other children younger or his age it really makes things hit home. You see them chatting to their parents, shouting for their mum when they are distressed or want something, running about and playing with other children, choosing what to buy in shops, walking down the street beside their parents, turning around when they hear their name.. and many, many other things.

IMG_0738.jpg

It’s really tough, really, really tough.
When I heard this, had it confirmed by other professionals who have seem him on many occasions and really thought about how he actually is, it started me on a downward spiral.

-WeeOhana

0

DIS – Week 6 – Last 1

I went along with a little sadness to Dylan’s final DIS appointment, the past six weeks seem to have flown by and with this being the last one it brought along many feelings.

I was feeling pretty annoyed that they now don’t offer two sets of this and only do the one, I wish they would still do two because Dylan really showed lots of progress while attending this and I think if it was for a longer course I would then also see the benefits, progress and advancements outside of the DIS room too.
I was also upset because Dylan had really enjoyed this and had really started to enjoy going into the children’s centre and I know next time we go in he will lose the plot.
Full of happiness and being proud of Dylan too because he has coped so well, grown to love going and had came so far with her.

The speech therapist came along too see him at the last one as she is the one who had referred us on to the DIS but had told us not too expect too much. After the second one I was thinking that she was right and he wouldn’t get too far along the course before we deemed it a waste of time. She came in about 5 minutes after we had got started and she said she just couldn’t believe the difference and that it was like she was with a completely different child in the room. Because she has seen that routine is really key for Dylan she is going to try and get a regular speech and language slot for him which would be fantastic as I think this would really help him.

DIS was great and I would advise you if you have been offered it to give it a shot no matter how you expect it to go. We really didn’t think Dylan was going to be ready for it at all, but he showed us that routine really is key to everything he does.

(Sorry this post is coming to you pretty long after we went to our last DIS, but we have had lots of appointments recently and I haven’t really been coping to well either, but will update you on everything in the next few blog posts.)

What is DIS?
DIS Week 1
DIS Week 2
DIS Week 3
DIS Week 4
DIS Week 5

-WeeOhana