13

Final Diagnosis Appointment.

When I got the letter through the door with the date for Dylan’s final part of his diagnosis I was overwhelmed with emotions. I cried instantly, with happiness that we finally had got a date after waiting all this time, with dread about it being final and what ifs. Thankfully it was for the next week so I didn’t have too long to wait with all these emotions flying around in my head.

I had asked on a local autism group on Facebook about what I should expect as I was pretty clueless to what would happen and wanted to at least be a little bit prepared, and I’m so glad I did ask. I was told what to expect and that the place I was going to was pretty run down and when we pulled up to it I couldn’t believe quite how run down it was. We managed to get parked in the car park which had very few spaces with the majority full and had a little pep talk about how it would be OK whatever happened.

Before we got into the building Dylan was already pretty unsettled and I was worried as had heard from a few friends that if your child isn’t compliant they will rearrange another date for you to come up and get them seen again, which obviously I really didn’t want to happen.
We were met by two lovely ladies who showed us to a waiting room which had a few toys in, typically all the ones Dylan picked up or showed a little interest in didn’t have working batteries in so this annoyed him more and me. I thought they would have ensured that the majority did have batteries considering that they are fully aware of the children who come to the clinic sometimes have a low-level of understanding. Anyway..

After waiting for about 5 minutes they came and got us and told us they would take Dylan into a room which we could see into through a 2 way mirror but that if he wouldn’t settle for them they would get me to come into the room with them and see if it helped. While we sat and watched they tried to get Dylan to engage in play with a shape sorter and some sensory toys but he just kept putting them back where they came from and was getting more and more wound up, until they got a pop up toy out. He loves pop up toys so this settled him a little bit until they tried to take it away and he just kept hugging it close to himselfย  and throwing away any other toys they offered him. They then asked me to come in to see if this would help settle him after having him in for 5 minutes, I looked at Ad and said I think we will have to come back..

I went in and he climbed onto my lap and was still pretty distressed by everything that was going on, one of the ladies even tried to tempt him with Play-Doh which is usually one of his favourite things but he just got madder. I had been in the room less than ten minutes and she said, “we have enough evidence now, if you want to go back out and wait” I was shocked but also super pleased that despite him not playing ball they managed to get all the information they needed and in such a short amount of time.

He was not for settling after all that had just happened and being pushed to try to settle, but the ladies came back in quickly enough and told us that they had enough evidence today to give Dylan an autism diagnosis, after this Ad took Dylan out of the room to try and calm him and so that I could chat to her and hear all the information she had to offer.

They offered for us to come back to chat without Dylan but we decided it was best if they told me then pass the information on because let’s be honest the place was a 45 min drive away, I don’t know anyone I could leave Dylan with for that length of time.

They have referred us to get support from others, are going to provide us with a few courses to go on so that we can learn as much as possible about everything that is going on and will send the report out with all the information about what they had found today in approx 6 weeks.
We then headed back to the car and Dylan calmed down when he was back in a familiar place safe in his car seat.

img_7926

10

Child Developmental Clinic

It was my little mans CDC appointment the other day, and I really did not know what to expect from it. I had asked several people who had been to them before and everyone gave me different answers, so I’m going to tell you about my experience and how it all went!

The whole day before I had so much nervous energy I ended up sorting out my whole kitchen, cupboards and the lot!ย  hadn’t expected to get much sleep that night but I must have worn myself out running about like a lunatic cleaning/sorting/worrying etc as I actually managed a pretty decent sleep! Which was a great start as it gave me the energy I needed to be able to listen and concentrate on what was being said.

We were called from the waiting room and met a lovely lady who explained to us what was going to happen during the 90 minute appointment and that there was six other people there to observe him .. so seven people to watch my little 23 month old boy, that seems like an awful lot right! Well it seemed like even more when you walked into the room and saw them all staring at you..all happy, smiling and welcoming faces just very over whelming! My little man wasn’t sure at all what to think, but they are all very used to that and they had everything under there belt, the winning one for him was bubbles! He loves bubbles, what child doesn’t! They then all introduced themselves one by one; physio therapist, speech therapist, Occupational therapist and so forth! The questions then came as he was being observed by all the people there and as one by one they all went over to him and tried to get him to do whatever it was they wanted.. from walking up stairs to making eye contact.

There was so many questions asked I can hardly remember any of them or how I even answered, my partner told me he was impressed with how well I handled them all and answered them all… So I’m thinking they weren’t really the easiest of questions and that is why I have forgotten the majority of them, mixed in with my anxiety I’m surprised how I even remembered to breath through it all let alone answer all these questions thrown at me!

They then went around the room and gave there feedback to us about there findings; one thing that I was worried about was the muscles in his legs being a little short as he is constantly on his toes and not only just a little bit he goes fully up on his toes and occasionally will even walk on the other side of his toes! His muscles are fine though and we were advised to get him some heavy boots to try and encourage him to walk flat footed otherwise he will end up shortening the muscles in his legs. I am now on a hunt for some cute little boots in a lovely size 5! =]

The speech therapist told me to work on his eye contact and that we would have a few appointments with her shortly to help and give me more ideas on how to get him to give eye contact. Then the others mainly spoke about how to try and help him in the world around him, doing lots of messy play to try and encourage him to get used to different textures and how everything in the world around him is. To try tight clothing when I take him out to see if this helps him to feel settled as its like getting a big hug and close contact. I got lots of ideas of things to do with him to try and help him get used to different textures etc so that he will then hopefully start to eat a lot more things! Did you know that your hands are very closely linked to your mouth, so hopefully when he accepts different feelings on his hands he may start to in his mouth too!

It then came back round to the lady who was asking all the questions and listening to what everyone said; she looked at us very seriously and said that it was Autism.
Even though I had expected this my heart sank.. I just needed to get out of the room. Away from all the eyes watching and all the ears listening and waiting for my reply.
She then went on to tell us that she couldn’t refer us to the Autism Clinic until he was two and a half years old, so that we would have to come back in six months for this and that when we were back we would also discuss where would be best for him to go to school and to apply for schools too then as it was important to get on there lists from the start to make sure he got a place.

I asked a few more questions about how long till certain appointments etc.. then quickly left after thanking them all.

Even though I expected this outcome, it was still a huge shock. I am still coming to terms with it and I’m sure I will be for a very long time. I’m really not sure how to feel about it all.. all I know is that our life has changed forever.

I love him & I always will, no matter what.

WeeOhana xx