2

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. 

-WeeOhana 

22

CDC Take #2

I’m really not sure how I feel right now, what thoughts are going through my head or how I’m even expected to feel. I just can’t pin it down to one feeling.. in all honesty, I’m feeling a lot of them all at once and it isn’t doing my head and heart any good at all.

We arrived 10 minutes before the appointment hoping that it would help to get Dylan settled before the appointment.. but boy was I wrong. He screamed the place down and continued to do so for the 15 minutes late that our appointment was too. The lady then came to get us and said she had heard him from when we had come in. (thanks for making us wait then!) We then went into the room with the other therapists and it all started to become very real.
When we went in Dylan was not a happy bunny, pulling us by the hand to signal he wanted to leave, screaming and standing by the door. Thankfully the speech therapist remembered that he loved pop-up toys so she brought this out to see if it would settle him. He settled for a little while then she tried to remove this to encourage him to try something else with another of the therapists there.. but he just wasn’t playing ball. He settled after a while with some coloring and posting games, typically he was very happy when it was time to leave.

As all this was going on, I was having questions thrown at me left, right and center. Well no, they were very good at making sure they didn’t talk over anyone or myself, but I think it’s because I was the one in the firing range it just felt far too much. She was asking if this was how he got on when he goes into new places, how he had improved and I told her with a smile all the improvements I had felt he had made and she half smiled and told me they were great. Unfortunately though they all veer down a very obvious path and not the path that you want your child to travel.

The first thing that we got ticked off her list of things to get sorted was an education plan. She said that she didn’t think he would cope in a mainstream school even with a 1:1. She said that she would worry about his safety and that it just wouldn’t suit him at all. So all the information for this has been sent off and we are just to await an appointment of when to go and see them for them to write-up a report.
If I was being honest with myself, I knew this was going to be the outcome. Though I was living in hope, denial and wishful thinking.

The next part did shock me, I knew in my heart and my head that he was autistic, it was blatantly obvious. She had told us at the previous appointment that what she suspected was autism but he was too young to say for sure; but she told us at this appointment that; yes it is autism and that he is severely autistic. She said that he ticks every box for classic autism. It was a shock how she described him as severe, but when you look at it from a realistic point of view, he really is. Everyday life is a real struggle for him, and clearly something he doesn’t particularly enjoy when you are taking him out of his safe spaces.

My emotions are everywhere, I have written this post still feeling numb, unsure and disconnected from my emotions, because right now I’m really not sure where they are.
Friends & family keep asking how do I feel, honestly, I really don’t know right now.
I’m trying to make it to the next day with a smile, trying to stop it from sinking in. I don’t know when it will sink it, it may be in a matter of days or months but I know when it does I wont be someone you want to be around. Well, more I wont want to be around anyone. I will hide away and more than likely my hubby will need to take time off work to help me through this.
It’s not a simple path that we are going to walk, I’m going to fall off the wagon and right now; it could be any moment.

It’s a huge thing, it’s life changing not just for Dylan, but for the whole family.

-WeeOhana

0

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