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 

8

DIS- Week 2

This week I had arranged with the lovely therapist that we would meet at the front desk so that we did not have to go into the waiting room with other people. This works well as he is her first appointment of the day, so she can ensure she is there promptly.
We arranged this because people being close to Dylan or looking at him causes him a lot of distress, so to have this 6-week course of DIS working as successfully as we can he needs to in a calm, happy and cooperative mood. 

One thing that I must say is that parking is crazy here, so even though Dylan’s appointment wasn’t until 10:15 I went straight over after dropping Amellia at school! It took about 35 minutes going round and round the car park to finally find a space! Thankfully Dylan is really good in the car and he sat happily waiting until it was time to go in. 

We went in and waited for all of about 2 minutes at the front desk before she appeared, which was fantastic! Dylan was then shown the spade for the sand and he was really excited going through the sets of doors to get to the room. He really enjoys playing in the sand so this is the task that he will always do at the start so that he begins with a positive and knows what to expect… Routine is key!! 

He happily played in the sand, smiled when she sang her little song and it was going fantastically! Though this went well last time too, so I didn’t build my hopes up too much though it did give me a smile! She then showed him the next item.
After a little protest he was more than happy to take part in the next few things. They were posting tasks, and this is something that he really enjoys at home and I had told her last week. She aims to put things around the room that he enjoys so it makes moving from task to task an enjoyable thing for him. After finishing the posting activities, he then had to move to the next table.

He wasn’t as happy changing to this table as he was moving to the previous activities but with some gentle encouragement and sitting him on my knee for a few minutes he was then really enjoying the activities and I was able to move away. He then proceeded to colour match on several different occasions which was fantastic!
Finally, then he moved onto the last task before a quick play in the sand and going home.

This week’s DIS was a huge success and I am hoping that all the others will all go as smoothly now that he knows what to expect when he enters the room.
I think not having to go into the waiting room was a huge help and I am very glad that she has made changes to how she usually greets the children who attend to try and enable this to be a positive experience for Dylan! 

Fingers crossed next week goes as well! =D

If you want to check out what DIS is or how the first week went check them out;
What is DIS?
Week 1

-WeeOhana

 

 

1

They aren’t all the same.

Many people have been telling us how lucky we are that we have already got Dylan seen by therapists, that we have got his education plan started and that we are already on the right route for him. Though how true really is this?

They tell you of the story of their best friends, cousins, aunties child who was only recently diagnosed at the age of ten. That they had been going through school without getting any extra help as they didn’t know anything was wrong until the school or someone else pointed it out. They then encouragingly tell us that Dylan will do great because if this kid could do it in mainstream school, why couldn’t he. That people didn’t even know, so people won’t notice with Dylan.
By this stage I’m already tuning out, nodding along, or looking at them like that have 6000 heads.
Don’t get me wrong I am super pleased that this child that they know somehow is now getting extra support and doing fantastically, but lets be realistic
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If you think these stories that you are telling me are helping me, or if you think all autistic children are the same; I encourage you to come to my house, give Dylan his lunch and then take him out to… let’s say for example soft play. (All children love soft play, right?) You can see what its really like and I can have some much needed me time, maybe I’ll clean, bath, or even have a nap!

Now that you are back to a refreshed and rested me, let’s have that chat again.
Do you now understand how this story is a much different case than Dylan?
You see, he couldn’t cope in a mainstream school. He is non-verbal, and well you have just had him out for the day so you witnessed his melt downs, how he lacks the understanding of any basic instructions, that he doesn’t enjoy what most kids enjoy, that there is no chance that he could make it to the age of ten before we questioned this. How in a mainstream school he wouldn’t cope a day, let alone several years?

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I will listen to your story and tell you how great it is that this child has now got the help they need, but please don’t try and link it to my son until you have witnessed what he is like.
That it isn’t just because of my background that this has been spotted early, that this would have been spotted by my health visitor anyway even without my questions and phone calls to her.
My son has severe autism, this affects everything and anything he does, every day.
Not just when he hasn’t slept well, or has a cold, or on Sunday.
This is every day, everything we do, and anything he does.

“If you’ve met one person with autism, you’ve met one person with autism” – Stephen Shore.

-WeeOhana

2

DLA Does not make it all ok.

Since Dylan’s Autism has become a lot more obvious to others around us and after it being more or less confirmed at our last appointment there have been a few comments people have made that have bugged me. Especially from people who were ‘friends’ at the start of all this and then have slowly floated away because they just don’t want to know, think it will go away when he gets older… that’s for another blog post! But anyway… back to this one.
A couple of people have said to me “well, at least that means you can get DLA now.” Oh yes, fantastic. It’s going to solve all my problem, because I can pay to fix him… oh wait. No.

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Yes, I do get DLA for him, it is because he needs that extra money to get him things that other children wouldn’t need and if you have ever looked at things for children with disabilities you will notice that as soon as you add the word, disability, sensory, autism, or any other words to what you are searching for it nearly triples in price. This really annoys me, as these children need these things, but I can also understand why places do it, people need these things so they can charge whatever they want for them and if you think it will benefit your child you will find a way to pay for it and get it for them no matter what.

To buy Dylan a pram that will do him for a while as he is obviously starting to outgrow his pram that he has now is £700+, private speech therapy is £40 a time, private occupation therapy is £50+ a time, you also hear about how music therapy, animal therapy, and many other things that really help autistic children. Especially at an early age as they say everywhere that early intervention is key with things like autism as it helps to break down barriers and make them more willing to join our world a little bit.

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Some speech and occupational therapy is done for Dylan with the NHS but personally I’m really not sure how much once every 3-6 months really counts as early intervention. I know they have lots of children to see and I have been really impressed with everything they have done with Dylan how fast we are getting him seen etc, but a lot of this is because of how obvious his autism is. People say that I should be thankful that we are getting seen so quick and referred on… to me in a funny way, this shows how obvious and severe it is. (Another blog on this to be made too!)

Yes, it is good that we get DLA for Dylan, it takes away a little of the money stress, it means that we are ok for me to not go back to work like they suggested, and we can buy him what he needs and when he needs it because at every Speech & OT we go to they always suggest a whole heap of new toys and things to help him.
No, it doesn’t make it all “a little better” or even better at all. I am still in shock that some people think that money can make this better. Money will not provide a fix, it will provide things that help him live a little happier in our world, but it won’t make it all go away or make it all ok.

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This is Dylan, and Dylan will always be autistic.
We love him though, just as much and even more so than others love their children.
We have to go above and beyond to help him, to teach him that interacting it good, even if it is just to give me his cup when he needs juice rather than just screaming.
We are starting to learn what his wants and needs are, or how to sense from just a tiny little thing that Dylan does means that he has had enough and needs to get away.
DLA though, does not make it all ok and if you think it does make it all ok for someone with a disabled child, then think again.
Can money really buy happiness and fix everything?
What is your answer to this now?

-WeeOhana

11

We can do it.

Something that I am finding really tough is that there isn’t a fix, some medicine, a magic cure or anything at all that would help Dylan to experience a ‘normal’ life.
I love my boy, my little buddy, my curly fro, chum, cutie, handsome little man; my son.
Though if I could take this all away from him I would.
This can’t be an enjoyable life for him, he can’t communicate with me or anyone else at the moment. He doesn’t understand emotions, boundaries and many other things.
He gets so frustrated he self-harms by head banging, hitting himself in the face, grinding his teeth, throwing himself on the floor, diving at the floor head first, He also has self stimulating behaviour a lot because this world causes him to have far too much sensory input, he can’t deal with it like you and I can.
He doesn’t enjoy going out to soft play, when we go for walks he likes to stay in his pram- his little safe space, he hates going to the shops and I now only go if he is sleeping, or can be left with my husband, safely at home.
He can’t stand change, we have to keep a very strict routine otherwise it is chaos. He wouldn’t sleep, in fact sometimes he manages to run on as little as four hours sleeps for a whole day and will keep this up for a week sometimes two untill we get him back and sorted.
What he enjoys the most is being in the house playing with his letters and numbers. Though it has to be all three packs of letters all spread out across the floor and sofa, with the numbers out as well. Generally the same letters are all placed together, and so help you if you move one that he has strategically set down. His new favorite is this set of barrels he has that are like russian dolls, they all go inside each other. The first time he found these, he spent the whole day playing with them and I must have put them back together and inside each other about 500 times, it was draining. He was happy though so I did this, and by the end of the day I was mentally exhausted. I had to celebrate and joyfully tell him what colours they were, and cheer him each and every time he opened one. This doesn’t sound too bad does it, it’s not, untill you do it for an entire day.
He has meltdowns on a daily basis, when he has a meltdown he gets so confused. He wants picked up, but he doesn’t want touched so he hits out, throws his head to try to headbutt, screams uncontrollably, when you put him down he head butts walls, he hits himself in the face and throws himself at the floor. He grabs at you to be picked up again and gets really mad if you don’t but then, when you do it makes him worse again. We have a beanbag and a soft play mat so that we can put him down and he wont hurt his head and extra tall baby gates so that he can’t escape and get outside to where he would be in a lot of danger as he has no sense of fear or safety. What settles him will change from day-to-day, we have lots of tricks that we try, but as a parent it really pains when you can’t just scoop your child up and comfort them.
When they don’t find comfort in their parent, in you, it’s very tough.

I love him with all of my heart, and I will always do anything and everything to help him. I will enable him to have the best life he possibly can and to live it to his fullest potential. I will fight all the battles for him that he isn’t capable of fighting for himself.
I will make this all work out ok. I’m not in denial I know it will be a bumpy road, I know it’s not going to be easy on me, my husband, my daughter or our families.
We can do it.

-WeeOhana