CDC Again..

Think this was our 4th, maybe 5th CDC with Dylan. When I was told that it would be a different paediatrician than my normal one who has seen Dylan since he was 16 months old I was a bit annoyed. I was told that they didn’t know when she would be back in so I obviously took the appointment that was offered to me to help to progress through everything.

Whenever we attend any appointment with Dylan we tend to wait in the car until two minutes before the appointment to go in. This is due to Dylan getting extremely worked up if we have to wait in a strange room with other people in, so we have found that this is the best way to ensure that he keeps nice and settled before hand. When we went for this appointment though they were 20 minutes late. Dylan waited a lot better than he ever has at the very start but then he started to get more and more anxious and after 10 minutes I was back to doing the usual of walking up and down the hallway trying to stop him screaming and to calm him. Ad went out to ask them what was going on and was told that at the start of every CDC they always discuss for 20 minutes. Now I have been to my fair share of CDCs and this has never been the case and was even more frustrating knowing that they were in that room beside the waiting room with the two-way mirror being able to hear and see how worked up Dylan was getting.

Eventually they came to get us and it was the new paediatrician that we hadn’t ever met, as soon as we sat down she asked such a ridiculous question especially seeing as they had supposedly been chatting about Dylan for the 20 mins we were waiting .. she started off with-

So, what are you concerned about?”

I just started to cry. Not huge sobbing crying because I was keeping myself together in front of everyone but I looked at her and replied with one word – Everything. 

I composed myself a little, but I did go on a little rant. I wasn’t mean, or rude I just expressed how frustrated I was by everything that is going on. To be honest I think I have every right to be frustrated and everyone in the room said at the end of my little rant that they could honestly understand why I was so frustrated.
Dylan was first seen at the children’s centre when he was he was 16 months old, he was referred at 13 months old. Even from the very first appointment we have been told that he is autistic and that he would need to attend a special needs school.
When we first went we were told that it is great that Dylan got referred so early as Early Intervention can make a huge difference to a child… but we have seen none of that. Not a single thing until very recently when speech therapy started 2 weeks ago.
We have also been told that the waiting for an official diagnosis is a lot longer than it is meant to be. You are meant to be seen and have the diagnosis within 12 weeks of doing the parent interview… we have been told that it will be a 9+ month wait.
I mean, we need this official diagnosis as much as professionals keep telling us that he is severely autistic my heart and mind are going through daily and sometimes even hourly battles over this. This is destroying my mental health, putting huge strains on our relationship and causing out family to suffer.

We were told that he may not get a place in a special needs nursery because the wait list at the moment is really long to get official statement done and we were told to not get our hopes up for him to get a nursery placement.
I mean COME ON!! We were apparently referred at the earliest stage possible to the education board so that we could get this done and sorted and not have to fight and wait for this like everything else, but now we have been told this. What the hell else am I meant to do?

Everything is just not right and something needs done about it.
Who can I contact for help?
I need this all sorted so I can then concentrate on sorting myself so I can be the best mother possible to my kids, to know how to help Dylan the best I can… This isn’t fair on our family and many others I know going through this.

Also, to add, Dylan needs a new high chair, he is too heavy for his current one and without being strapped in Dylan will not eat food. He does not seek food or enjoy food, but the NHS will not provide us with one or even help us to get one because it is classed as a restraint. Same as a car seat, its classed as a physical restraint but they have told me that they know Dylan needs one as he escapes from a seatbelt and that it isn’t safe.
Since when did a child’s safety & well-being stop being the main concern??

Sorry I went off on a bit of a rant… but I hope you can understand why, and if you know where I can go for support and advice to push these things further forward please do get in contact. 



Autism Assessment – Stage 2

Stage 1 of the autism assessment is where you are seen by a pediatrician who then refers you on to the next stage if they agree with the concerns and think that an autism diagnosis is necessary.
We got referred to stage two the third week of December which was when Dylan turned three. Unfortunately they cannot refer you to stage two until the child is three, which has made this a very long and drawn out process for us because Dylan’s autism has been so obvious since a very young age. Thankfully though for the stage two we only had to wait a few weeks.
I had heard about the stage two assessment from other people who had already done it and I was very nervous, I was expecting to leave in tears.
Basically its a parent only interview to get as much information about your child from birth to now. All the milestones they hit and which ones they struggled to reach or have yet to reach.

When we went in and as we were sitting waiting I was getting so anxious, and was really worrying about Dylan. When you go to this appointment you are not allowed to bring your child with you so I really struggled leaving Dylan. I can count on one hand the amount of times I have left him with someone bar my husband.
After a few comments made after we got back, I wont be leaving him with them again.

A lady then came to get us from the waiting room and she was very friendly and calming. She told us all about what would be happening and why we were there etc and asked us if we were happy to start and away we went.
At the start she asked us a lot about how Dylan was as a baby, how was the pregnancy, birth, what was he like, did he sleep well, did he hit his milestones for walking, smiling, laughing and what was he like when we weaned him. As I was answering them I was thinking to myself how obvious it was even from such a young age that Dylan was autistic, he smiled & laughed very late, weaning was hell food it still a huge issue with Dylan, I can’t remember how he slept.. but I think it was ok..I can’t remember being too exhausted? (haha!)
She then went on to ask us about how he is now, how he communicates, copes with change, diet, behaviour, friendships, understanding, dislikes and all that type of thing and after all the questions about his struggles etc. and then to end the bit about his development she then asked about his strengths too and his like.
I’ll not answer these all for you.. otherwise this blog post will end up extremely long.
Obviously it isn’t easy at all especially on the mind and your mental state to be constantly thinking about all of the negative things, what your child cannot do and what they really struggle with but I think that I now know that you have to give all this information and think about it that I have grown a little harder shell when being asked and I just answer it the best I can because I know I have too to ensure that he gets the help and care he requires and deserves.

She then asks about your mental health and if anyone in your family has any mental health issues, diagnosis etc and then after that she just has a little chat.
She told us that usually they ask how you will feel if your child does not get a diagnosis but she said that she wouldn’t bother asking us that questions because it is very obvious that he is autistic. She asked us how we think we will feel when we do get the official diagnosis and I think I am going to struggle.

I worked in a special needs school with many kids who have autism when I was younger and many who I have encountered think that this will make it very easy for me to accept and to just carry on with. They seem to forget that these children I worked with, they weren’t my own. I went home at the end of the day and so did they, I wasn’t emotionally connected to them like I am Dylan, my own son. Personally, I think it makes it a lot harder for me. I have experienced how autism affects children as they grow up, I know the struggles and what the future may bring.

We now have another 6-9 month wait for when they will see Dylan and give us an official diagnosis and get it over and done with then onto the next hurdle.
The lady wrote at the top of our one that we will take any cancellations and we just want to get the official diagnosis over and done with so that we can move onto the next part of the greving process.




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.



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.

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.



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.



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.


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.


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.