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!  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

 

18

The Start of a Long Journey

I’m not really sure what to write, or how to phrase what I write really, I just know that I need to write it somewhere as a place to get it out and as a sort of journal for what all is about to begin. Currently we are just starting a long journey with our handsome son to see what is going on with him. Our first step is Monday when he is getting seen by the audiologist.

I’ve had my worries about him for a while, but it took me  until a few months to convince myself that I wasn’t just being silly and there was something going on. I then decided to book a doctors appointment and went armed with a list of my worries and concerns about what was going on with him. I felt like a crazy mum going in with a list, but the doctor there knows me well, was very welcoming and told me he was glad I had a list so that I didn’t forget anything. So after him checking over my little monkeys ears/throat etc we discussed what I was worried about, he decided that we needed to get the health visitor over to see him asap and to get the ball rolling to sort things out with him. One thing he said that really got to me was that “he will either progress from here, or start to go backwards.”

After speaking to my doctor I was hoping to have a weight lifted off my shoulders and him telling me that I was just being silly, not to rush him and so forth but as you can tell, thats not how it went. I came home and got on the phone to the health visitor to get her to come and sort us out. I had to wait a week until she was available to come over, and I’m sure a lot of you reading this are parents and you know how long a week feels when you are in panic and upset about your child.. little did I know the waiting time of a week was the shortest I would endure in this process.

When she arrived she asked me what my worries and concerns were and we got to have a good chat as he was having a little nap. My worries were.. I suppose still are!

  • He doesn’t respond to his name, no matter how loud you shout it. Though hears things like doors creaking etc. At the start I was worried he was deaf, until I realized it was more a selective hearing thing. (this is getting checked on Monday though as they have to clear his hearing before checking everything else)
  • He is 21 months and doesn’t say a word, he babbles a bit, but no words or sounds that mean anything to him. He used to say dada/dog etc and knew what they meant.. now they have disappeared.
  • He tiptoe walks, a lot. Like right up nearly as high as he can get.
  • Extremely fussy with the foods he eats.. Doesn’t really like lumps or bumps in his food.
  • Doesn’t brings toys over to show me/his dad or his sister
  • Isn’t keen on his sister sitting beside him, when she does he will try to bite her/pull her hair.
  • Very little eye contact, or response to emotions from others.
  • Head banging against a wall/floor (very upsetting to experience =()

As I told her these she asked me had I been on google and were these all big worries or just little things.. when I told her that I used to work with children with additional needs she started to listen a little more, and then when he woke up and demonstrated to her several of these things she then said that I was right to have a list written. She then plowed on to serious mode.. She told me that she hoped she would come here and see him and tell me that she would come back and see him in a few more months and that he would grow out of the things he did. Unfortunately she told me this wasn’t the case and she wanted to write down reports etc and get them sent off that night to get him on the list to be seen by the child developmental team as soon as possible. . This was at the start of July.

I have had a lot of time to take it all in, think things over and over again, worry, get upset, get annoyed and most emotions possible really. This is a real tough thing to be going through and to be left in the dark with when the ball will start rolling. I have his audio on Monday so at least that is something but I am yet to have an appointment from the child developmental team. I am going to ask them when I am in on Monday if they have a clue about time frame.. I think the not knowing when it is all going to start is the hardest.. Especially when I know that when the ball has started rolling it wont be straight forward and that it will be a long time after many appointments to know what is going on.

As his mum, I just want to make it all ok everything be fine and one day for him to wake and to have came on leaps and bounds. Be talking and everything.. but as the days and weeks go past, I know that wont be anytime soon. It hurts a lot, but I have to keep my brave face on, keep smiling and positive for my family.

One thing I have found through all this though is that you constantly seem to be on the look out for things that are different/worrying/wrong etc.. So I have tried to concentrate on the positive and enjoy what makes him, him. The way when he laughs, its from deep within him, he has the most wonderful and infections laugh and when you have discovered what makes him laugh you can do it 1000 times over and he will find it just as funny as he did the first time! How when you hand him something new he will inspect it in great detail, turning it over and over again in his hands looking at all the tiny little details on it. That he empties out the whole box of hot wheels to find the one with the red roof and then will grab any other one to have one in each hand.. then will go to the table and play with them for ages without anything distracting.. unless his sister goes near him! 😛  That he will pick the tiny bits off the carpet and place them in my hand and will do this until he thinks they have all gone! When he climbs up beside his sister and for the brief moment will sit beside her and how excited and happy she gets by this, and how at the park he will find a bridge, and go back and forth across this bridge the whole time we spend there chuckling away to himself. He does a whole load more that makes me so proud and privileged to have him as my wonderful son. I love him, and I always will, no matter what the outcome is.

WeeOhana. xx