Sunday, May 10, 2015

road to recovery AGAIN

5 road to recovery AGAIN

We finally come to terms with L’s seizure; we searched every inch of the web. Apparently it is perfectly normal for any child to have one possibly two seizures in their childhood. That’s a comforting fact to all mothers out there, I’m sure. There is no explanation, they simply will never know what’s caused it, or if there is more to come. You never let a seizure go on for more than 5 minutes, you NEVER wake the child and YOU LET the child SLEEP after for as long as the child needs to after it.. If seizure lasts more than 5 minutes you ring an ambulance.

(Please if any of that information is wrong please post a comment with the correct info and I will change it, thank you xx)

It’s nearing October; L’s Botox and casting procedure is due in a few days. I have to admit I’m nervous as hell as I’m afraid he will have a seizure under the anaesthetic. But he’ll be in the best of hands so that helps me a little. We arrange to leave Lunatic john in my mother’s and we being Crazy jane and L to Dublin and stay in my brothers house.

Today’s the day, the moment I’ve been dreading is here. We are the first into the day ward, handy, first in, first done unless a child younger than Mr fab and more severe than Mr fabulous arrives. Nope Mr fab’s first, at first they were going to cancel the procedure as Mr fab had not had an EEG on his brain; they eventually decide to go ahead. We are not allowed go to operating theatre as they are doing work on that area. I walk with the porter; he’s lovely to the lift. I have to actually stop there and trust this man and the team with my son.

It’s a long wait, but here he is, sitting up smiling, he’s a bit groggy and he has 2 blue casts on his legs. He didn’t bat an eye lid at them; he loved the feel of them and kept looking at his little toes poking out. He’s wolfing down toast and 7up. He can come home, once he’s up walking. He’s wobbling all over the place, he looks comical but he’s walking, on his tip toes, OUCH the nurse said its normal, leave him to it. They gave me the vilest looking shoes, open toed, its autumn?? Straight to McDonalds, then into pennies for a pair of uggs, ok their girl’s uggs, but when you cut the boggles off, their quite cool.

How funny, Mr fab is like a demon when we get home, NO ONE is allowed to sit on the couch; he pulls us all off, with a few scrapes and pinches to go with it. What are you doing you little nutter. No, no one could sit on the couch, so I made everyone sit there and do their best to stay, on, he went mental, and he’s got some strength for a 3 year old child. We finally arrive back home, we pick up Lunatic john from my mum’s, she’s changing his nappy on the couch, Mr fabulous straight in and grabbed Lunatic john by the arm, wow my mum’s got some good reflexes, Mr fab then tries to pull Lunatic john off the couch by his ear, the screams, the scratches, pinches, and just determination to get everyone off the couch was just mental. My mum decided to keep Lunatic john for the night just till Mr fab calms down.

He’s like an elephant when he walks, thump thump thump, those casts are heavy little things, thank god we waited till October. Again with the couch, ok I made Crazy jane sit on the couch, every time Mr fab went near her I gave out to him and made him stop pulling, Poor Crazy jane had a few war wounds but she knew we had to get Mr fab to stop so she persevered. Mr fab eventually stopped doing this at home but went on to do it in the in home worker’s house. What can I say; I got a strange child lol. He eventually stopped after a few WEEKS.

Everything settling we’re delighted with how Mr fab has taken to the casts.
and its getting better
A miracle has happened. Mr fab and Lunatic john although not the best of buds are kind of ok together, KIND OF. They can be left with supervision or separation by corner in the same room. Wow this is a major break through. Lunatic john loves to follow Mr fab around; Mr fab just about tolerates Lunatic john, just about. This is not perfect or an issue resolved by any means but its something. Lunatic john even is sleeping a bit better at night, A BIT.

We find our selves having to secure the telly even more to the wall than what it was, Mr fab likes to hug it and slap it ferociously. We have to board up our chimney, yes Mr fab liked to go up there, get stuck up there and paint the front room and hall with the contents from what’s up there. Mr fab also decided that the couch was thirsty; he poured a full 2 litre of milk down my comfy, lovely cream leather couch. Oh the lovely fresh smell of sour milk. Please go away smell as I love my leather couch and never want to part with it. It does EVENTUALLY thank god. Oh this is just great fun. Mr fab is becoming so interested in his surroundings, and investigates, eats, colours, paints everything in site, he even rips the wall paper off the wall, go Mr fab, explore away, oh god, he is a nightmare.

Life, it’s not perfect and I sure as hell know it never will be, but it really is just the little things that really make it all worth while. Mr fab is non verbal but yes he can communicate. If he wants a drink, he’ll waddle over with the bottle of 7 up, milk, juice, which ever one he wants is. If he is in the sitting room and needs a drink, he’ll simply fling his beaker at you, erm yea thanks son, same to you with bells on. If he wants fruit he will stand in front of the fruit bowl, clap his hands in excitement and simply vocalise an eeeeeeeee sound so that you hear him and see him. You see Mr fab is very clever, the Pecs cards are Velcro’d to the press of all his fav’s, but Mr fab is a stubborn oul shite. Mr fab knows that he should hand you the Pecs card, but why would he do that when he can simply open the press (even with the child lock on) and get it him self. If it has a wrapper he will simply throw it at you as if to say, oi you, mummy person, open that for me.

When I think of Mr fab I think of stuey from family guy. I think that’s exactly what goes on inside L’s head. (Well now you know what I mean, I don’t have to explain) I see Steuey and I instantly think of L. You see I know L is extremely intelligent; I have no worries regarding him in that area. I also know he is very stubborn and again wilful. I know he thinks all sorts in that head of his. The cheeky grin says a thousand words. I think he quite likes to keep us puzzled as to whether he can or can’t speak. I think he deliberately holds back as he enjoys his way better.

I understood a long time ago that Autistic kids are just the same as us, only their world is just a lot better than ours. Why listen to noise if you don’t want or have to, let’s block it out. Why put up with a screaming baby, he’s not my screaming baby, you deal with him, just keep him away from me. Work, I will if I want to, but don’t think for one second that you can make me. Hand you a card, you mean seriously if I want a banana I have to hand you a card, will ya fuck off you insane person, if I want a banana I’ll get a god damn banana thank you very much. The smell of that is irritating me, remove it please, and so on. I’d like to be like that at times myself, what’s wrong with that really at the end of f the day lol.
I’m very accepting of Mr fab’s autism, and I always have been. I see my boy, happy, enjoying his own world. I could have done strict ABA, but to be honest, Mr fab didn’t need it. I could have strict routines and strict rules, why, L simply does not need that either. I could put intense pressure on him to speak, communicate words like WANT, I, HELP, why? L will grab your hand and make you help him if he needs it, Mr fab will more than let you know what he wants, he is able to communicate extremely well that even strangers know what he wants, because of this, he does not suffer frustration all of the time, just some of the time, he does not get angry and hurt, lash out all of the time, quite rarely actually.
He is in fact a very calm, easy going and very expressive and communicative non verbal autistic child. I encourage the words as do the school and he is making excellent process and his vocalising sounds at the minute are just brilliant. I also am convinced along with tutor and other family members that we have heard words and in the right context. This is just fantastic news but again, there will be no major pressure put on him. In saying that he’s still very young. Hormones have not yet kicked in, teenage years a long way off, all this could change dramatically, I’m sure they will, but lets be happy with the L here and now and deal with other stuff as it arises.

I know other autistic children are not like this, and I know I’m very fortunate that Mr fab is who he is, I’m very fortunate to be able to go to a restaurant with my son, yes even a snobby one and have a nice meal. Mr fab loves his food way too much to let autism ruin his dinner. And if he squeals a few eeees and yummms do I care, no, so long as he is enjoying himself and behaving to some extent.

We can go to parks and shops with him, its stressful as he bolts but between the two of us we do it, it took at lot of encouraging and persevering on our end, but he enjoys it, so long as he has munchies to snack on and it’s not way too crowded and noisy. We have applied for an autism assistant dog for him, this will promote a lot more independence for L and security for us. The wait list is near 3 years long but we’ll see the benefit of that wait.
I love my children unconditionally and I don’t care who looks at them different, who slag’s them off, who stares if Mr fab is flapping his ears, I don’t care because I am fortunate enough to know better. I am educated to know better. I’m above it all and do know better, it’s the lookers and the starer’s problem. The rate Autism, ADHD, dyspraxia, spd, Asperger’s, mental health, anxiety disorders and all these other disorders are increasing, it will not be long before the on lookers them selves will be also witnessing a loved one’s, friend’s, or in fact their own child’s special needs.

I suppose it helps for me that I had worked with autism before I had my very own autie funky bunch. I kind of had a jump start on things that most parents wouldn’t have and the fact I knew something was going to be wrong also helped in a big way, it was less of a shock to our system. I worked as a child care professional before studying and becoming a sna but than moved into an aba unit where I started studying and practicing aba therapy. This is applied behaviour analysis where you analyse a child’s difficulties and follow a programme put in place by an aba psychologist. I then went onto study psychology, child psychology and counselling. Now until I had L I could swear blind aba was the only way forward for autism, but than I became an autie mum and I started to think differently. ABA is wonderful and I say use it if its for you and your family, I praise a lot about it, I just didn’t see how I could let it into my world and my child’s 24/7, I took elements from it and used them but I also took elements from everywhere else and used them also. I hired an aba psych to assess L and write him a programme and it was a great starting block. He went into a local service provider also who where brilliant and helped get me everything L and our family needed. I had the usual lengthy aggravating fights all us special needs parents have and I had my fair share of screaming matches down phones (you turn into psycho mom when you need to shout for stuff you are actually entitled to but don’t get.

Autism is really about taking each day at a time and going with it more than you go against it. Working with autism and living with autism are 2 very different things, as a person who did both let me just say some therapists talk shite to warn out drained parents and they never even realise it. They think their great offering you ideas, suggestions, help, well they’re not, sometimes as a person who works with autism can just be an ass, the mom secretly in her head is planning her shopping list or to do list while they’re still shiting on with all their wealth of information. You see they can come up with strategies for your child but forget you have other children a house, a hubby and a job etc to get on with also. They can put programmes in place, they can advise from the hilt but unless they’ve spent more than a month living with your child and your family environment they just don’t know shit about shit, they may think you do, they really don’t. Now there are other types of therapists, they’ve grown up with a autistic family member, they get it, or they have taken the extra time needed to understand your situation, they know well you cant do 3 hrs of speech exercises a day, 4 hrs of OT a day, 3 hrs of physio a day, 5 hrs of floor therapy a day yada yada, so they show you how to incorporate it into every aspect of your day instead without even realising your doing it. These are the gods of the therapists. Through teeth brushing, getting dressed, nappy changes, cuddles, play time, night time routine, feeding, you name it they figure out how to get the job done as quick and painless as possible without hugely impacting on your day and yours and your families quality of life. You see they remember you telling them your child and yee don’t sleep, they remember you telling them your child shit smears which involves lengthy heavy duty clean up (crime scene tape stuff) they remember he likes to bleed himself so he can paint with his own blood, they remember that he likes to make himself vomit so he can smear that too, they know your fucked tired and they know you cheerfully want to strangle your child at the best of times, they know, they remember and they just get it and don’t judge you.

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