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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 himself  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.

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Mums & Tots!

When I was at my CDC appointment with my little man they recommended a mums and tots group that was just for children who attended the unit as they know how hard it can be to go to other mums and tots with lots of children/noise etc! So I thought I would give it a bash!

When I would go to other mums & tots he couldn’t handle the noise, amount of people, amount of toys.. everything was just a giant sensory over load so he would go into a meltdown. This would consist of him screaming/crying/throwing himself to the floor/hitting his head off the floor/running at walls/scratching at himself.. people would stare, which made me feel extremely anxious, upset, judged and many other things. The leaders of the mums & tots would come over and sing/give him toys/try to help.. but obviously that just made it worse. Obviously they are trying to help and didn’t know what else to try/do.. so I ended up leaving and taking him to the car to settle him down, I would say to myself that maybe he would like a different mums & tots, that I would try others. Believe me, I tried several different mums & tots, I think I went to all of the ones in my area, but in the end I gave up. The longest I managed to stay at one with him was 15 minutes. When we first went in, he hated it, So I gave him my phone and sat him on my knee for him to watch Morph and accept what was going on around him and hopefully join in. A lady beside me made a comment about how he should be off playing with the other children and enjoying himself like a normal child rather than sitting playing on my phone. I didn’t even bother to reply.. I picked him up and left. I made a group decision for him and me, that we wouldn’t go back to a mums & tots for a long time.

Until when I was at my CDC appointment and they told me about the mums & tots I thought it sounded fantastic, it still took me a few weeks to go to it, to get over my anxiety of the looks/ what ifs and so forth! When I went, I couldn’t understand why I had put it off!

Its a fantastic mums & tots ran by a wonderful group. When we first went in, he wasn’t too happy.. so the lovely ladies there got out the bubble machine and then went away from him. He sat on my knee for while watching the bubbles, then he got up and started popping the bubbles then ran off and saw all the other wonderful things they had. The ladies then got me stuff to fill in while chatted to me about what they did and what was going on with my handsome man.
There was only 5 other children there, in a big hall with all the toys spaced out and a wonderful sensory room. It was fantastic, he pottered about by himself happy as larry without a care in the world. It was wonderful to see, and I chatted to a few of the mums, some of them in a very similar situations to me, it was great to speak to others who are going through the same sort of thing, who know what its like to still be feeding your two year old 10+ month food.

We now go every week and when we pull up outside the hall his little face lights up and he starts flapping in the wonderfully excited way that he does! Its great, to get out of the house and for us both to enjoy ourself and relax.

Is there anywhere that your children especially enjoy? Places they really don’t like?

WeeOhana xx