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Hearing Test, Hopes & Goals.

I’m not sure if you will have read how Dylan’s first hearing test but I came away from it saying I would never take him too another.
Roll forward 16 months and he was due for a review as they couldn’t get a clear reading last time due to him screaming and being disgusted by the whole situation of it all. They told me that they would recall him in 6 months time, it didn’t go well either but not quite so bad. Again they couldn’t do the full test as he would not cooperate they told me he would be recalled again in 6 months but they weren’t worried about his hearing they just now had to get a positive result for their records.
When an appointment came again for him to be checked again but in a different hospital I put on my big girl pants and took it by the horns. I wanted to get this green check on his records, rule it out and onto the next thing.

He wouldn’t let them look in his ears for very long at all, but the lady knew straight away when he was getting distressed and didn’t force it on him unlike the ones at his previous appointments. She said the one ear she got a look in looked a little red, but seeing as it was winter time this occurs to most of us especially if we have a cold. We then went back to sit and wait for the next part, thankfully we didn’t have to wait long as he isn’t ever very happy about waiting in strange places.

In the next room he had to sit on my knee while a lady tried to get him to concentrate on something while another played different sound etc to test his hearing.
As they were doing this I was thinking to myself about how if it was his hearing we could fix this, help him and right it all.
As I found myself getting caught up in those ideas I had to remind myself that if he does have a problem with his hearing, we could sort that out but it wouldn’t solve the many other things he struggles with daily, he would still be autistic too.

When she left the room to go and talk to the lady doing the sounds I felt like I had just been to a job interview. Making him sit still, hoping he would behave the best and do his best in the series of tests he had just done.
Inside I was panicking a lot that they would come back and say that some of his problems was because he couldn’t hear very well, and that he would need to get that sorted alongside everything else that was going on.
Another part was hoping she would come back and say it was his hearing and that she had the perfect solution and it would solve everything!

Though I knew in my heart of hearts this was never going to happen, I say to people that I don’t like false hope that I want to live in reality with it all and I rather everyone be honest and upfront with what they think.
This is true, but sometimes I can’t stop the little bright ideas my brain thinks it has sneaking in and bringing a whole load of false hope and joy. When I realise I’m being crazy or when I’m even proved that I am wrong then it is a whole load of heartache.
This is why I try to live in reality and not give a whole load of false hope because it just knocks you back when you are climbing.
Obviously I agree with hope, everyone needs hope and goals.
I believe in attainable goals for my kids, ones I know they can reach or are close to succeeding in so that we can celebrate together rather than discuss things they haven’t reached yet. Celebrate everything, some things that you don’t even notice your children doing are huge milestones for children like Dylan and others. It really makes you appreciate the small things, like when he looks at you, when he tries something new, when he touches something he hasn’t before.
I know its going to happen soon so one of my goals for Dylan is that he will call me mummy soon and know I am mummy and not just use the world, another goal which is going to take a lot longer but I have accepted this is that when I smile at him for him to smile back.

-WeeOhana

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-

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

 

 

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ToddleBike2 Review, Discount Code & Giveaway!

Many autistic children have poor motor skills and this makes many things challenging that you wouldn’t necessarily think about unless you were in the situation.
When I was offered the chance to try out the ToddleBike2 for Dylan I was really excited to see what he would make of it. The ToddleBike2 is really like a step before the very popular balance bikes you can get, it has four wheels and teaches the very basics of using a bike before having to worry about keeping the bike upright too.

The ToddleBike2 is aimed at children aged 18-36 months but can really be used by a lot large range of ages, Amellia loves Dylans ToddleBike2 and she is six years old! It has been tested up the weight of 100kg so your older ones can enjoy it too, without having to worry that it will break and it also has a 3 year guarantee just in case something is to happen.

IMG_0727.jpgThe ToddleBike2 is also extremely light and Dylan really enjoyed carrying it about for the first while and inspecting it. It took a little while of him carrying it about and playing with the wheels before he tried to sit on it.
With it only weighing 0.8kg it is really light to carry and would be perfect for taking out on walks and then when little one has had enough it is easily carrier for a parent!
We are going to keep to using it inside for longer for Dylan to grow his confidence on it but I know that it will be used a lot next summer when Amellia is out on her bike too!

IMG_1082Dylan started of sitting on it sideways and trying to shuffle along on the ToddleBike2 and really wasn’t sure how he was meant to make it move.

After some demonstration from his beloved Elmo and pushing Elmo about he then hoped on board himself and followed suit!

Look at that wonderful smile! Once he had is sussed he absolutely loved it, was on it all day and every time I put it into the kitchen he is bringing it back into the living room.
I really can’t wait to head out when Dylan is a bit more aware of his surroundings and the ToddleBike2 will go on many different surfaces with its lovely smooth wheels.

I totally love this ToddleBike2, when it arrived I was surprised at how small it was but do not let its size put you off. In fact, the size & how light it is really adds to just how brilliant this ToddleBike2 is. Another thing which I cannot believe is the little price tag to go along with how wonderful this bike is! It costs £23.95 and has free shipping to the UK & Ireland. Though if you aren’t lucky enough to win the giveaway I also have a 10% discount code to use here, the code is BLOG17!

Here is your chance to win a ToddleBike2 for your little one or a little one that you may know! You have to be in UK & Ireland to enter and you will have the choice of pink, red or blue. This will run until the 29th of November, Good Luck!!

 a Rafflecopter giveaway