2

Acceptance & Denial.

Coming to

I think it is a very common thing to do, to doubt what you have been told about your children. Especially when you are trying to come to terms with it.
I go through phases where I think to myself that there is no way that Dylan is Autistic. I mean, he is my perfect, handsome wonderful, clever little boy who I totally adore, obviously. This is something that will never change and I will always feel all of these feelings and many, many more about him. He is my son, my little buddy who I will always love with all of my heart.
It is hard to accept that your child has anything wrong with them, something that changes how they view the world and how the world will view them. Something that you as their parent can’t fix with love, medicine, therapy, or anything at all. Yes you can help make it all a little more bearable for them and show them how they can ‘fit’ into the world and the supposed things they are meant to feel, enjoy and like but is that really helping them when you are then trying to make them conform to what we view as ‘normality’?
I have always been one for trying to join Dylan in his world, copying him in things he enjoys, if I enter his world then he may want to join me in mine for a bit too, but I am not for forcing him to conform. It’s all about give and take. Even in a relationship with my husband; I don’t force him to like everything that I do, and likewise I don’t like all that he does but we compromise so that everyone is happy and I’m sure that is the same for you, right? So now explain why should I try to force my son to like all these expected things rather than letting him enjoy what makes him happy and his own little self?
IMG_1947.jpgAfter doubting it all I generally very quickly get a wake up call and brought back from my safe haven. Sometimes this happens so abruptly that it can take me weeks and months to recover emotionally from.
I always feel that I am very in denial about how much Dylan’s autism actually affects him. I am with him 24/7 so Dylan’s quirks and ways are all that I know now. We have all got used to this and the how Dylan is, but when you see other children his age it surely gives you a huge wake up call to just how much it does affect him.
Its made much more obvious about how much it has effected his development when around other children his age. You see them chatting away, running to mummy and daddy to ask them for help or to show them what they are doing, showing off their new toys to their friends, playing together and so many more things that I don’t process as things that Dylan struggles with until they are right in front of me and made so blatantly obvious that these are things he should be doing too.
Amellia finds it very difficult to process when we are around children his age and she has been made aware they are the same age. When we get home there will be lots of questions of when will Dylan talk, when will he want to have a sleep over in her room, when will he want to play Lego with her and not just knock the tower over and many, many more questions. I answer them as truthfully as I can, Amellia is incredible with Dylan and totally adores him but sometimes people forget that she is only six and obviously this is very hard for her to process and understand too.
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I think the going back and forth between thinking that he clearly is fine and then to realisation that no he obviously is autistic is just a way of my head trying to get round it, my head trying to accept it all and come to terms.

-WeeOhana

4

Don’t dwell…

Must Not Dwell.. (1)

I have started 2018 with a bang and completed my online course that I singed up too to extended my knowledge on autism with a pretty impressive 100% on all modules.
I am pretty chuffed and it sure has given me a nice little boost of pride and self-confidence to start the year with.

The course I completed was compiled of these modules;

  • Understanding autism
  • Autism and communication
  • Autism and sensory experience
  • Autism, stress and anxiety
  • Autism: supporting families

I found out some facts from doing this course that I wasn’t aware of, but the majority of it I knew from living daily with an autistic child.
I think this course would be beneficial for people with very minimal knowledge on autism, but if like me you live with autism in your life daily then it probably wont provide you with much extra.

I learnt some facts that really shocked me and admittedly scared me too.
Did you know that only 15% of autistic people are in full-time employment? 75% of the population are in full time employment.
I mean.. how crazy is that, and how does that give me any hope for Dylan. It seems absolutely bizarre that the percentage is so low and really unsettling for parents of autistic children.

At least 1 in 3 autistic adults are dealing with severe mental health struggles due to lack of support. 70% of autistic adults believe they are not getting the help from social services that they require and they also said that would feel a lot less isolated if they were given the support they need and what I believe to rightfully deserve.

It’s crazy, it really is.
The future scares me, it really does. Its something I try to not think about too often because it worries me, really worries me.
What does it hold for us, how well will we cope, how we can get the best for Dylan possible and all while keeping the balance of family life right too… it’s a lot to think of and far too much to dwell on.

-WeeOhana-

2

3rd Birthday!

On Saturday Dylan turned three.
I mean how fast was that? It feels like he was only just a tiny little newborn, though in other ways it feels like it has gone so slow with all the constant waiting for appointments.

Dylan spent his day doing exactly what he wanted too do, what better way to spend your birthday?
Amellia was awake first and came and lay in our bed with us until Dylan was awake and ready to go downstairs. Thankfully we didn’t have to wait too long before he woke up but it gave me enough time to try and explain to Amellia that he wouldn’t be eager to unwrap his presents like she is and to let him look at them in his own time.

We weren’t really sure what to expect with the unwrapping thing and how he would even react to the whole day. We only wrapped a few of his presents to try and help him not get too overwhelmed,. With it being impossible to explain to him that it was his birthday or what a birthday was we couldn’t prepare him for what to expect which is the same for everything that we do with him and one of the reasons why he struggles so much.
With it being his birthday and him having no clue and no excitement its a pretty tough hit to take as a parent. You always think of your children loving there birthdays and having the best day ever, but to Dylan this was just like any other day with a few new toys.

When we got downstairs he headed straight for the Elmo and cookie monster teddies that we had got him as he totally adores sesame street at the moment and he has always loves teddies of programs that he loves. He would have played with these all day but Amellia was desperate for him to open his presents from family over in Wales, thankfully I was able to distract her for a little while so that Dylan could have a little play, but she was so excited that it didn’t last too long.

With a little bit of encouragement and a helping hand from Amellia he got his presents unwrapped and had lots of fun looking at what he had got.


After we had had breakfast I then took Amellia out to play in the snow so that Dylan could have a look at his presents by himself and enjoy them slowly while she wasted some of her never ending energy racing about in the snow and getting some quality time with myself too.

After we had defrosted a little inside it was time for grandparents to come over. We enjoyed some cake, more presents and chat. Amellia then took her grampy back outside to throw snowballs and go sledding. She really loves the snow. It also meant that the house was quieter again for Dylan to help him regulate himself.

After everyone then had left we had treated the kiddies to McDonalds for Dylans birthday dinner as this is something that he actually eats. Madness right, but apparently no one makes chips like McDonalds.
Amellia & Adrian headed back outside for a last play in the snow before bed and then as if by some miracle Dylan took my hand and stood by the door. Now if you read my recent post you will understand why this was a huge step, so I very quickly got his shoes & coat on and mine then opened the door. I expected him to slam the door right away but wanted to be prepared just in-case.
He took my hand and marched off down the street!!
I was over the moon, I mean what he has been like recently about going outside and then he does this it was incredible! He wanted to stay outside all evening though, so we let him walk round the block a few times and I headed in while Adrian did another lap so that I could make inside even more exciting that out!
After a little fuss he came inside happily and watched Storybots while playing with some goo.

After this real emotional high for us and thinking the day had gone pretty well Dylan then quickly changed. After getting his pjs on he had a huge meltdown. Amellia was trying so hard giving him his favourite toys and everything she could think he would like but every time he was just lashing out at her, so Adrian took her upstairs before she ended up hurt and we could see how hard she was trying to help him and was getting frustrated that she couldn’t help.
He wanted me to stand up, but not touch him or be near him so I sat on the sofa and he was pulling me back up. I tried everything I could think of and in the end I just kept putting him back on the matt we have so to prevent him from hurting himself when he was head banging.
It was getting to the stage where I was hoping the snow would disappear so I could take him for a drive as I just had no idea what else to try. I ended up just sorting the room out around him so he could still see me and I was stood up because me sitting for some reason was really annoying him and then the next thing I knew he had passed out he had screamed so much.

Poor boy, it was horrible.
The day had just caught up with him and was too much.
-WeeOhana

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.

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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.

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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.

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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

 

 

3

DIS – Week 5

Unfortunately after the week break for Halloween Dylan wasn’t as cooperative at his 5th DIS as he had grown to be in the previous ones.
He went in great, but he found it very difficult moving from the sand table which is what he always does first. After a little fussing and lashing out he then moved on to the next task which was puzzles and a shape shorter which is something that he really enjoys doing. He completed them all and after a gentle reminder to put them in the done box he did this successfully after every one he completed. He enjoyed doing the tasks at this table so much he tried to get the ones out from underneath for the next child. It was then time for the water tray.

IMG_0564.jpgAfter a very enjoyable time playing in the water tray it was then time to move onto the next table. This time thankfully he moved over great and took the object with him to match with the other object,he sat down nicely as he knew that he got to play in the lentils here and he really enjoys that. First of all she got him to do some letter matching and was very surprised that he could do this, though I had told her from the first one that numbers and letters were his up most favourite thing and he really enjoys. He then got very distressed when having to move on from matching letters but we managed to get him settled again by playing with a balloon and he then completed all the tasks at this table.

IMG_0687.jpgIt was then over to the carpet to play with the trains before heading home. I then chatted with the lovely lady while he was playing for a short while, we both agreed that the weeks have gone so fast and she said that she agrees with everything that they have said during the CDC clinics. She said we will discuss things further next week and hopes to have her report written up by then which would be great.

Lets hope the last ones goes smoothly and the speech therapist gets a chance to pop along and see how much he has improved with once a week so that she will then hopefully see him more often.

What is DIS?
DIS- Week 1
DIS- Week 2
DIS- Week 3
DIS- Week 4
– WeeOhana