Functioning

Several studies put the number of adults with ASD living independently at less than half.
including those with low, average, or above-average IQs, remain at home well into their 30s and sometimes beyond.

Something that always stuck with me was a behavior therapist that said
"that's great that he knows how to do division at 4 years old, but if he can't dress his self or accomplish other daily living skills independently at say the age of ten, then what level of functioning would you say he is ?"

She was stating this to show that academic inteligence, even launguage skills does not automatically mean that someone will be able to "function" enough to need no supports as a adult. Daily living skills is something that alot of people with ASD struggle with.

Wether a child/adult is "high" or "low" functioning they both come with their own set of weaknesses and strengths and every person on the spectrum is unique

We need to stop with the high/low functioning labels, it tries to put our children in a neat little box and limits those around them to not see their potential or to acknowledge their struggles.

It's something I have had a hard time with, being a mom to two boys on the spectrum I myself have been known to refer to them as such, but when you know better you do better!

From moment to moment

the globe has no ‘end’ – no finish line as with autism.
Perception of competence in one area can not negate the reality that there may be serious challenges in others. -a diary of a mom-

There will not be a day where we reach the end, autism changes every second of every day.

one week you wonder what your worrying about because look! he is thriving pretending , engaging and spontaneous. he let you brush his teeth, bathe him (still no hair washing) but its better than before.

another he is refusing to leave the house and no amount of bribing has worked, time out has failed and here you are forcing him out the door and into the car just to run a quick errand.  (to him it seems your never going to return home) he has shut down and wont respond along with refusing to use his words.. I could offer him the moon and he would still give nothing.

But I know next week  or even 5 minutes from now I could have my happy spontaneous little man as engaging as ever back . That is what makes all the work all the therapy , the medicine we contemplated worried over and all the hours and I mean hours of research so very worth it.

because maybe one day the moments of disconnect will be so few  that we wont even notice or at-least they will not hurt as bad.
nothing hurts as much as not knowing how or what to do to reach your own child especially in a moment when you know they need you.

this is the beast of autism, where one moment your making so much progress and the next your wondering where all that progress went but Wait! dont blink because your on to the next hurdle with some new issue to tackle.

Potty training escapades

Potty training!

When we potty trained Mr.Smile he was a breeze, two years old night and day trained in a week.
I knew this would come back to bite me in the butt..


So the Brute has been working on potty training now for awhile. He is doing great 90% dry during the day for pee and dry over night for pee also.

Number 2 is a whole other story. I don't think he quite knows he needs to do that on the potty, we are pretty much taking him every so often to go pee still.

BUT and there is always a BUT when potty training! he has taken to a whole new level of creativity  as to where he goes number 2. So the other night I walked buy his room to this smell and knew immediately than he had pooped. After going into his room I found a excited naked little boy proudly exclaiming in his jabbering voice (what I assume is) "look what I did".

He had removed his underwear and then apparently climbed up on his side table and proceeded to poop, all I could do was laugh.

Of course I had a short convo about using your potty and he happily repeated what I said as he usually does. Can not wait to see where I find poop the next time!😋



               

Aggression..in all its glory

This is a topic that I find is usually not talked about, even though it needs to be. people get uncomfortable, shy away or just change the subject.

I want to start off by saying  every person with autism is different, our journey with Mr.Smiles and the Brute has been one that has seen plenty of aggression.

It started with Mr.Smiles he was just turning three when it really flared up. He would kick, smack  and try to punch, usually while screaming at the top of his lungs.  As he got older the aggression changed  in the way he carried it out and how we handled it change also. When he was younger we would just turn away and ignore the behavior, eventually he would run out of steam, during especially difficult aggressive outburst we would place him in his room and wait.

Now he is 3 years older over 4ft tall and almost 55lbs we can no longer ignore it when he hits or looses control. We will wrap him up holding him so that he can not hit or kick, trying to place him in his room mid meltdown is just not feasible it allows for to many opportunities for him to hurt his self or us as we are moving him.

We did seek out applied behavior therapy (A.B.A) when he turned four and they have been monumental in helping Mr.Smiles cope with his emotions and learn appropriate ways to show he is upset and to calm down instead of becoming aggressive. Now these moments are not as often and his last big one was a week span several months ago where he ended up punching out the window at his A.B.A center. They handled it wonderfully and he was okay (thank goodness). After adjusting his anti-seizure medication he seemed to level back out.  (Mr.Smiles is in A.B.A full time and home-schooled but that is a whole other blog post waiting to happen )

I know with Mr.Smiles he does not go into these moments of rage thinking I am going to hurt you, he is not planning this out. What he is , is a little boy who's emotions are way to big for him to handle and he has not quite learned to say ("enough, This is all to much and I need you help me because i'm fixing to loose it) He is a little boy with Autism and his Autism effects his ability to communicate his feelings , even though he can tell you all about sea slugs and vampire squids. He can not however  tell you when its all to much before hes already spiraling and its to late.
He is a little boy who will go into a aggressive outburst and then meltdown because he doesn't want to be that way.
Mr.Smile gets consequences when he has aggressive outburst with anyone or thing, This however does not mean that we cant be compassionate and understanding that as hard as it is for us, it is even more difficult for him. He will literally go to sleep if at home after these outburst. most of the time once he comes around hes upset with his self over it way more than we are (and believe me it takes its toll on us also)

I think that we need to talk about these types of behaviors that do often pop up when raising children with Autism because it shouldn't be taboo.  it does not mean your not parenting at your best and it absolutely does not mean your child is "bad"

the brute is really just entering his aggressive meltdowns and his include trying to bite and scratch (oh the joys)

But for every trying moment they give us. We always get ten more wonderful, sweet , loving  this is our boys moments

https://www.autismspeaks.org/sites/default/files/section_1.pdf

How do you handle the stares or rude comments

So this is something that I am sure every parent goes through regardless if they are parenting a neuro-typical child or when parenting a child with special needs.
I am also sure it is safe to assume the latter deals with this topic much more often.

My husband and I have dealt with anything from inappropriate staring, dirty looks and even extremely rude comments.
.
Here is one that will always sting alittle, another that shows it just doesn't matter someone will always have something to say and finally one where I realized i'm starting to just not care.

#1, we were at the store and my then 3 year old was in a full blown meltdown. He has sensitivities to sounds and it just so happens as we were going through the parking lot a cars alarm went off. This in turn caused him to cover his ears and become way over stimulated.
A lot of the time once this happens he can not be calmed  down. We just have to ride it out. this is what we did.. placed him in the cart still shrieking and kicking and just kept reassuring him that it was over the sound was gone and he was okay.
unfortunately we live in a world where other ADULTS feel that they can say whatever they feel like because obviously we had no idea how to parent our child "insert eye roll".
A grown man proceeded to walk by and say they need to just beat his a**. '
my husband replied hes autistic and some other profanity i'm sure.

here is the deal though with people who say things like this I have learned they do not care if there is a reason or not. In their mind you should be able to spank your child into behaving regardless.


#2 my mother and I were at lunch with both of the boys, They were happily playing on their tablets and my older son was occasionally talking with us.
Meanwhile I over heard the conversation from the table behind us discussing how terrible parenting we were showing by letting them have their tablets and how this is what is wrong with  children these days.
(I give this occasion as a example of your damned if you do and damned if you don't) Had my boys not been on their tablets i'm sure a meltdown or two would have occurred, they just do not handle restaurants well without distractions.


#3 this one was very recent, we took all three boys to the beach! everyone had a great time and you would never know how my youngest had behaved when it was time to leave, from all the great smiling pictures we took lol.
He just did not want to go, I had already loaded up the back pack and had it on my shoulder when he took off trying to run from me. When I caught him I had one hand holding on to his arm and he went dead weight, trying to pull my hand/arm to his mouth to bite me. Knowing I was going to have to pick him up and lug him all the way back to the car, I was dreading it when he is like that. I pick him up he tries to scratch my face , hit me and throw my glasses.
eventually I had a grasp on him and we trotted along. during all this there were two younger women laughing and whispering to each other. mentally I took note, emotionally I just didn't have any energy to spare on it.

The thing is from the first time someone stared/said something rude to this most recent time, I have went from being angry  to being hurt. It still stings and at times yes I still get angry  but really it just hurts. they don't see the awesome loving sweet boys that I see and know.

my  hands are full when my children are melting down/struggling my main focus is neutralizing the situation or comforting them.

I always try to remind myself that they just have no idea, The only thing I wish is in those moments is that  I could explain to them why... but also how truly loving and awesome my children are even though they have these moments of aggressive outburst. I wish I could explain how this may be hard for me but it is so much harder for them (imagine being so out of control emotionally that you lash out and can not calm down , imagine how that feels) I want to explain that they are not "bad" this is just part of the disorder and we are making strides as it was worse at different times.
I would ask them to try to be compassionate and understanding...

Autism and other comorbid disorders

Something that is not talked about enough, In my opinion is all the different health issues that can and often do go hand in hand with autism.

For example my middle son who is six has the following 

Autism,Adhd,unspecified seizures,has had sleep issues,sensory problems, he also has low tone and benign hypermobility syndrome the last two seem to be common in Children with what used to be referred to as aspergers.

I wish that when we had received our first sons diagnosis that there was some sort of hand book telling us all the different things they may struggle with. Unfortunately  it has been a long and winding road trying to piece apart what is autism and what may be another underlying issue that needs to be addressed. 

We have learned that it is always important to follow your gut, only you know your child the best and if something feels off don't be afraid to search for answers.

I will also say the most powerful thing you can do is research! 

I will be doing some blogs to dive deeper into some of the comorbid disorders and what they have looked like for my boys.

http://m.raisingchildren.net.au/articles/autism_spectrum_disorder_comorbidity.html#comorbidity

Dont miss it!

 So something that I myself have definitely been guilty of is focusing on what my boys were having a hard time with, what they may never accomplish or what will be a struggle for the rest of their lives and the implications of said struggle.

I work very hard to remind myself to stay in the NOW and not look at the FUTURE.
 this really does help. It makes me see the progress no matter how small that either of them make, which small in the world of autism is actually huge!

For example The brute is considered non-verbal, this was extremely hard for me and was probably the hardest part of his regression for me to accept.. Admittedly I fell into the belief that well speech is everything. The truth is he does communicate, maybe not with words but he does in other ways.
I marvel sometimes in how hard he has to work to show me what he wants and how inventive he becomes.

If I stay stuck on the fact that he doesn't talk like other neuro typical two year olds, I would miss how smart and resourceful My two year old is.

It was hard to change my thinking to look more at the positives trust me, after a long day of Mr.Smiles being aggressive  or The brute biting his brother yet again. It was hard to stay in the now and not start thinking of what a year or five would look like.  so I started small I would remind myself one hour or even ten minutes from this moment this tough moment would be in the past.

That is not to say that I don't have my bad days, everyone does but we can not get stuck in those days or you will miss the little beautiful moments in between the hard ones. You will miss the progress worrying to much about the future.

the first time The brute raised his arms to show me he wanted to be picked up was tremendous for me he was 18 months old, way past the age that babies usually start this. It forced me to stop and realize that these small moments were what I needed to focus on.

so please slow down take a breath and don't miss it :)