Sesame Street’s first autistic character, has made her debut on the show.

 

Most people who actually know me and my family, know that my youngest son Ali is Autistic, granted he is HF but that is not to say we have not had a lot of problems over the years,  some are getting easier as he gets older, some are getting worse,  and we are getting new challenges as well nowadays there were not a problem when he was younger.
Of course like the majority of parents of a child that has been diagnosed with something, you do everything in your power to find as much information as you can, you follow website’s, join forum’s, and follow blogs,  It is through this following that
I have known about this since the first concept of the idea, one of the people I have followed for years, actually works for sesame street and his son is severely autistic, I will say that not only has he been very informative in the past, he is also very funny.  well worth following 

http://www.theautismdaddy.com/      https://www.facebook.com/AutismDaddy/

PINK/PURPLE *The joys of being a parent of an autistic child*

Ali (10) came home with a note from school about clothes needed to be taken in for a class assembly ,  he was not a happy bunny and is refusing point blank to dress up, he hates dressing up, in the past it has been a nightmare, and for the last couple of years we haven’t had to worry about it as he has always been a narrator on the school plays which meant he could just wear his uniform.  
for years he insisted on wearing the same clothes as his brother when not at school and it’s only over the last year or two that I have been able to dress them in different clothes, even now he hates new clothes and usually Alex has to wear something first before Ali will wear it.  

When Ali is at school he is usually in his element, everyone dresses the same, it’s a routine he thrives on.. until it comes to Christmas plays and class assemblies. he hates them with a passion, they can usually convince him to take part but only if he doesn’t have to dress up.  

So back to this note:
 

Now it would be hard enough for me to convince Ali to dress up at all, but to have purple/pink clothes.  Seriously?? The kid may be only 10 but takes men’s 2XL is 5 ft 11 with size 11 feet, pink/Purple is really not his colour!

There is no way I am going to go out and buy this kid anything in pink or purple,  His sister’s clothes wouldn’t fit him as they are both smaller than him even though they are now both 20 and over.. *Happy 20th Birthday to my step-daughter today* 
I am not a pink person myself so that is out of the question, but I do have a purple T-shirt that has a skull on it, so worst case scenario I’m guessing that will have to do along with his black jogging bottoms.
Well I will send the clothes in but I will let Mr Denney deal with the massive meltdown that is inevitable when it comes to convincing Ali to wear it lol

What is it with school’s and their demands for clothes for plays etc.
over the year’s I have had to provide pirate clothes,  roman gladiator , harry potter, knight, Arab and other outfits,  everything green for green day …  oh and brown..  
thanks to ebay, the pirate, harry potter, knight and gladiator costume’s and others, were found, bought, worn for about an hour and now  all sit in a box on top of the wardrobe in my room,  never to be worn again, well they wouldn’t be by the boys as they are too small now.  but in total, I would say there is about £100 worth of dress up outfits there. 

As for the green day, well Primark ended up being the destination to get a green T-shirt and jogging bottoms, again to be worn for one day and never again because I don’t for some reason dress my kids in green. 

Brown! Now that was a nightmare to find..  again it was eBay and brown t-shirt, does anyone dress their kids in brown???

All I can say is good luck Mr Denney, both this time and at Christmas if you are brave enough to insist Ali dresses up again and roll on next September when Ali starts senior school as we will no longer have this dress up crap ever again. 

RAF Hendon London The last Trip out of summer holidays

Last Saturday was the last major trip out for the summer holidays and we went to the RAF Hendon museum,  what can I say the place is massive, its great for all ages, its cheap. Parking for up to 6 hours and you need 6 hours was £4  and entry was free..   We took a picnic and there is a massive picnic area in there with 50 interactive things for kids to do from flying a helicopter to wind tunnels to dropping bombs……..  suiting all ages.  The boys loved the simulator, we felt exactly what it was like being in red arrow 7 and in the boys words it was AWESOME.   (that was an extra £9 for a family ticket)  and we saw a dog fight  {plane type in the skies} in full 4D movie…   even Ali who cant actually see in 3D was impressed because we were right at the front and with the glasses over his he still could see some effects although not all, and yes got soaked the same as us when the fuel tank was hit.

We are great fans of Duxford IMW museum for their exhibits but I can honestly say this matches it perfectly except we didn’t have the pay the £17.50 per adult to get in.. Duxford may have more hangers but this is so much better value for money if you are not there for the airshow.  (which Duxford charge extra for)

We Will be back… Yes  defiantly 

headcorn
Ok that is the side of things everyone usually see’s  Now for a change I thought I would show the side of things we face every day……..  for those who dont know Ali is on the Autistic spectrum

Ali even though he is interested and loves places like this. He can still be hard work at times and this is what happens. Yes we get looks from people when we go out to places, yes we get comments. and yes there are times when I am willing to quite happily smack people in the head for their ignorant comments.  But Not once on any of our trips out has Ali ever caused any damage……… thankfully while we have little episodes where he needs space and time to chill for a few mins.. we have never had a major meltdown while we have been out. but we still get people comment… one lady was disgusted that we could have no respect and allow him to slouch during a film shown on the bouncing bomb.  The other problem we have with Ali is he has no depth perception due to his sight problems and there was one exhibit with a rope and curb around it…   we were walking around and Ali tripped on the small curb and set off an alarm.. at which point this big jobs worth security guy came over and told him off….. I did see Ali trip but was too far to hear  clearly what was said due to the guys accent,  and Ali wont tell me because he refused to speak for ages afterwards and still wont say what was said…… 

I was tempted to go and say something to the guard but we were only half way through the visit and in all honestly what I would have said would probably got us kicked out.
However a strong letter of complaint has been written and sent off.

This isn’t our last trip out of the year but was our last trip out in the summer holidays.

headcorn ali

It’s Camp Time

It’s that time of year… And we were off to camp  and thankfully we have lovely weather all weekend.

Ali was invested into the cubs as well … He was so proud of himself…
Now being invested within your troop at the best of times when all eyes are upon you is hard and I did wonder how he would cope.. but he was asked if he wanted to be invested not only in front of the whole district of cubs and scouts at camp.. he was invested by the new district commissioner himself.

Not only did Ali do fantastic… He remembered his promise and actually spoke loud and clear…  and achievement in itself as Ali doesn’t talk to people he doesn’t know extremely well.

So proud of him and Allan as he had to get into the centre to do a little song with some other leaders as well.

cub camp ali being sworn in as a cub

Wow a tantrum… How cool is that!

Today Ali had a tantrum…  🙂
Yes I know he is 8 in July and for most kids that age you would expect them to be out of that stage,  but Ali is not like most kids.

The thing is… I think its great……….. 
You may or may not understand quite what I mean.

Usually Ali goes into Meltdown… It may be triggered by frustration, it may be he is in a situation he can’t handle, It may be because he is tired… or Alex has wound him up so much he just has to explode… or it maybe we have been somewhere where he has had a sensory overload..    I doubt many will understand what I am even talking about…..

Anyway as I was saying today Ali had a Tantrum and I was shocked. and relived.  He was asked to go upstairs to get his headphones for his laptop and I had said no ice cream until he had got them.  Anyway he wanted Ice cream..   So here is the deal…. Headphones……….  equals Ice cream…  and he didn’t want to go upstairs….  result  Paddy!
I’m not taking meltdown where he will go into total wrecking mode and will lash out at anyone and everyone who goes near him and there is no real reason behind it so there is no instant cure to stop it..
I had an instant cure today… I gave in… ok here you go… have an ice cream…   Silence……….  one happy but snotty kid.

He had got what he wanted… and thus ended the Tantrum. 

Why am I happy because he did what a normal kid would do…  

And Ali is not and has never been normal, and every day he gets older he gets stronger and in some ways more distant with the world at times. 

I pick my battles……  This one I let him win……

A week later! Some things can never be unseen!

About a week has now passed since I last posted………….

After calling and explaining to the  receptionist at the district nurses office at 9.30am when they opened,  she said they would get a nurse to call me back (have you ever tried getting hold of someone at the weekend?) 
so  I waited and waited in the end about 11.30am by which time I was getting quite worried so  I called the hospital ward that Dad was on and explained again what has happened, and they told me to call his doctor.  (at the weekend yeah right)
So I tried the doctors and after no answer I got hold of 111 and spoke to the NHS services and was told that they couldn’t help unless I was with him so I said I would go around straight away. Told Dick head to tell nurse if she called to call his number. Went to start my dads car which I now have as he can’t drive for a month so im using it to go back and forth to his place as mine is going to its final resting place in the week  *will try and actually blog about that when I get the chance) anyhoooooooooo insert severe swearing here  ******  Now in English…… it wouldn’t start so gave up and got in the landrover to drive over there.

Got to the old man’s let myself in and the bloody nurse had just called and she would be around in ten min’s well she actually took over an hour and half   and arrived about 1.15pm but when she got here she was great she took dressing off and its a lovely neat scar so should heal well and the stitches didn’t need trimming.  
I explained the problem about the discomfort he was in and the fact that he had not pee’d since friday morning and she said she was capable of putting in a catheter but couldn’t because she had to get an ok from the doctor so here was are….It’s Saturday and she has to get a doctor out  to put in a catheter to help relieve dad while they find out the problem. She said she would be back in a couple of hours as they had a doctor who works with the District Nurse…….  So we wait…………… and wait……….. and wait………… and wait……….. bearing in mind she said a couple of hours and that would be about 3.30pm  at 8.30 pm I am starting to get really fed up, My dad is really starting to be in pain now.. and yes my temper is starting to get a tad frayed….  And to top it off I have no idea who to call.. I tried the district nurses office and there was no answer……… so I called NHS 111 and after explaining the whole thing they said they would get a doctor out to put in the catheter but it would not be a priority….. and to remember its Saturday night and people do silly things….. so they are very very busy.   

At 10.30pm the Doctor turned up..
put a catheter  in and did a prostate examination as an enlarged prostate is 99% of the time the reason why you can’t pee guys! 
  (  There are some things in life I never wanted to see and both of these came under that heading)
funny-celebrity-pictures-what-has-been-seen-cannot-be-unseenAnyway  …………..  the
catheter that was used has a valve so it can be emptied. so to give you an shorted version of events  5 litres of pee into a bucket by the side of the bed later  I left and went home…….  one cup of coffee all day is not a good thing…………. So since then I have been spending most of the day running him around to various appointments.. cooking and cleaning for him and then getting home and doing the same thing here.

Yesterday (Friday) I exploded……. I woke up feeling like shit……. I have had a dry cough for the last few nights that’s been keeping me awake and friday like I said I woke up feeling like death warmed up.. I called my dad and said that as he had no appointments to go to..  that I wouldn’t be coming around today.. there was a cottage pie in his fridge that all he had to do was put in the oven.. I had typed out a list of the times when he had to take his bloods and pills etc so he only had to look at that to see when to take everything.  Told him I was going to have a lie in as I had been up about 6am all week .. This is the school break bty……..
(Again one day I may blog about other things going on.. Lets just say I have seen it before and yes if someone asked me I would say my dad has onset dementia now to top off everything else…….. I have noticed signs for a long time but probably just swept them out of my mind after spending years looking after my mum with it…….. I guess if I ignored it I thought it would go away.)
Monday I have to take him to the doctors for another appointment to find out when this catheter is due to be taken out on trial to see if he can go without it but already he has taken a liking to it as it means he doesn’t have to constantly pee all the time because of the water pills he is on for his heart, so I have a feeling that he would rather keep it… I of course have to do the cleaning of said thing  YUK!

Anyway I had a day off on Friday………….. and screamed an shouted at everyone… and cried… in fact I did a lot of crying.. I have hit the end of the road… I can’t look after one person all week and then come home and have to do everything.  The washing hadn’t been done since last weekend… the  sink was so full of dishes it was overflowing.. in fact the dishwasher still had the stuff in it I loaded into it last Monday night when I got back in from my dads.  The house was a tip… Thursday I had to take my dad shopping on his scooter as he wanted to get some bits so I left the house at 9am  Now there was some Dr Who thing on in town and the boys wanted to see it so we were going at 1.30pm   I said to Allan I would be back and we could take the boys…….  At 1pm I called Allan to say I would be on my way back. I had some shopping with me and then we would have to go straight up the town… I get back and he is still shouting at the boys to get ready.. Ali who doesn’t do getting rushed or things sprung on him had gone into meltdown and refused to do or go anywhere..

This is when I snapped…  He had done nothing all day… not even got the boys ready or warned Ali that we were going out.  There are three adults in the house and as I’m out that left two.. and neither had done anything… except maybe sit and watch tv or go on bloody facebook all the time.  And this is why I had snapped…  
so Friday my day off I had had enough.. right at that moment in time I could quite happily have left the house and jumped off a cliff………   

I wanted to see this Dr who stuff up the town so told Ali that we would be going out later on for an hour or so an if he was good he may get an ice cream out of it so he went upstairs and got dressed… Thats all it took.
Have I mentioned the fact that my dad called at 8am to ask what time I would be around!! what part of having a lie in did he not get… oh yes the same part of Im not coming around ..   

we went up the town… saw the exhibition things…  picked up some bits… got myself some medicine for the lurgy and some cough medicine and got Shelby a few clothes and came home as we also had to do the newspaper run in the evening in the scout van collecting newspapers down a number of roads.

Got back at 7-pm and decided that sandwiches, cake and doughnuts and chocolate while not heathy would be a good enough dinner for the kids.
pulled the sleep sofa out and watched tv before going to bed.  I had phoned dad to say I would pick him up when I got up as I was having a lie in and that Allan had to go out and do a bush tucker trial thing with a scout troop up bexon lane and he would be gone in the morning so I would come and pick dad up when Allan got back and that I would bring him back to my house so I could get on with some stuff……..  plus he needs a new bog standard mobile phone as his is apparently not working properly..  (I think its more the operator that the phone but I stand to be corrected if I’m wrong)

So here I am… updating this blog while I’m waiting for Allan to get back and I have already had three calls from dad asking why I am late………..  arrrrgghhh!!

Parents evening. It would be a proud mummy moment if they were as good at home!

This is my status for this evening on facebook.  for those who are on my friends list you may have already seen it but for those who are not on my friends list  here we go!

Last Wednesday I went to a parents evening for both the boys..
They both got excellent reports….. Both work really hard.. Ali even speaks to one of the teachers (although she admits that they have never actually had a conversation out of him since he started school) but he does as he is asked work wise and will reply when asked. and his mental maths is fantastic.
His only fault is his handwriting but as he is blind in his left eye and left-handed he cant even see what he has written until he is halfway across the page. Alex is a pleasure to teach… Seriously?
He works hard..  In fact no one could say a bad word about either of them.
SO why are they such hard work at home?..
Alex is the most obnoxious little s**t I have ever known and Ali is just hard work and living on the edge of Meltdown constantly.
Alex knows exactly which buttons to push and boy is he pushing Ali.
I know he is working hard and a lot is just sensory overload but Alex is winding him up and getting to the point of pushing him over the top. we have warned him again and again, and Ali is going seriously going to kill him……..

So if you see me with a shovel in the dark of night digging a big hole in the garden… It wasn’t me who killed Alex… it was Ali!!
They are like this all the time except tonight… Allan was out tonight and we had peace………….. Hmmmmmmmmmmmmmmmmmm