Monthly Archives: December 2016

Mainstreaming Autism


I dream of a world where my six year old can have a tantrum in the park and instead of frowning with disdain, onlookers would at minimum recognize spectrum behavior and at best be sympathetic, perhaps informed or even encouraged by my supporting strategies.

My determination; my decision to leave no stones unturned; my goal to help maximize my children’s path toward a full life and independence is fueled by my belief that remaining silent about mental illness simply creates lifelong societal harm.  It cultivates the shame and stigma and exacerbates the notion that something is inherently wrong with the individual affected.  It erodes families and it stunts the development of the person who has the diagnosis.  It enables parts of society to continue to feign ignorance.  

This morning I woke up to my six year old with an Autism diagnosis making an observation that was intriguing to him:  “Mom it is taking a loooooong time for me to finishing making pee.”  “Wow, I have sooooo much pee in the morning!”  Then he was asking… “Do girls make pee and poop from the same place, Mommy?” “Why do they sit on the potty every time?”

I believe one person can make a difference.  The decisions we make can shape our children’s future.  No matter their age, they are able to read us.  If we are mourning the diagnosis or feel shame, then that message emanates.  When we encourage, celebrate, empower our kiddos; that is who they become, even if it is not immediately evident to us.  Early in my children’s diagnosis I made a decision to follow the path toward their individual greatness.  So, with tremendous vigor, I pursue and embrace growth, and development.  This allows me to celebrate the early morning observations by my six year old during his potty experience… 

Living with four kiddos on the spectrum and experiencing their lives every day, I am privileged with a panoramic view of mental illness.  I am doing everything possible to help the world understand my children and see value in what they bring.  Additionally, I am encouraging other parents and everyone affected by mental illness, to take that journey with me.  We must all become active participants!  I am also doing everything I can to help my kiddos understand the world they live in and carve a path for themselves where they feel they can comfortably fit.  Mainstreaming Autism and mental illness will help bring about better understanding… I believe this will reduce the stigma attached and ultimately contribute to some cure.  Let’s continue to make a difference in the lives of those with mental illness to that end.  Each of us… It only takes one!

Choosing My Battles – My Autism Spectrum Disorder Family

My seven year old – yup he is a year older – jumps on his bed a lot. When he does, I simply say to him, “Beds are made for sleeping.”  I don’t get excited and yell “Stop!” or “No!” because those words feed into his momentary mania and excite him.  As a result, the issue becomes greater than it has to be.  I’ve released my powers to a seven year old…  What now happens for the most part when I hear him jumping on the bed and he sees me enter the room, he stops, grins and says “beds are made for sleeping!”  Then I concur and reinforce the statement, “Yes, beds are made for sleeping.”  

When giving him his bath, I say to him, “Turn and let me wash your tushy.” He sometimes yell out loudly, “BUTT!  Hahaha!  Mom is going to wash my BUTT!”  Then he goes on, “Butt is a potty-word, Mommy.  I should say ‘bottom’ or ‘buns'”.  He looks keenly at me for a reaction but I keep my practiced poker face and simply respond, “Tushy and bottom are good words, sweetie.”  Meanwhile, I am laughing out loud in the back of my mind.  I don’t reprimand or preach at this time!

Then, at random moments he yells out loudly to his siblings: “J-Fart, S-Fart, Z-Fart, Mommy Fart!  Hahahaha!”  Of course my eleven year old is poised for battle and starts yelling back.  I glare at him with a practiced look that means stand down and ignore your brother.  My eleven year old sulks and walks away.  Work in progress but I instruct the siblings to ignore him.  I encourage them to go to their rooms and close the door and I reward them when they do.  Then I give my seven year old a choice of two activities he may want to engage in.  I’d say something like, “Do you want to build a train track or would you like to play with your play-dough?”  Redirecting him is always a great option to practice.  I never offer TV or I-pad during these instances.

My seven year old goes potty independently.   Sometimes everything works out great.  Other times, he comes to my bedroom and tells me he is scared of the bathroom clock.  Everytime he does, I immediately stop what I am doing (poker face – no excitement) and go into the bathroom with him. I never want my children to be fearful, whether it is real or imagined.  I stand at the door while he goes potty and washes up and leave.  In this instance, I feel it is more important that he masters going to the potty, wiping and washing up.  I can throw out the clock but then realistically we cannot throw out everything he is afraid of.  So after he masters the potty experience, we will deal with the fear of the clock issue.  Since he is not complaining during every use of the potty, the clock is not an issue I need to prioritize at this time.

My eleven year old recently received an award from school during Assembly.  His Teacher sent a note inviting me to come to school to see him receive this award.  The note was stapled.  There is a Wednesday folder that comes home from school, so that particular evening I’d brought the folder in my bedroom and did not replace it in the box in the livingroom.  That night before my son went to bed he brought the note to me…  He said, “You are invited to an assembly tomorrow I am receiving an award.”  He handed me the note.  I immediately noticed the staple was removed and my name on the front.  I asked him if he saw who the note was addressed to?  He responded he did.  I asked him why he opened it?  He said he wanted to know what his teacher was telling me.  We discussed it for about fifteen minutes and he simply did not get what the big deal was… He wanted to know what was in that note and that was the end of it as far as he was concerned.  One of my argument to him was that it was illegal to open someone’s mail.  He replied that the Postman did not bring the letter to me, he did!

After one of his tantrums, he recently told me he does not access his calming strategies because he does not like the idea that all these people – his Therapists and I – are telling him to. He admitted that he knows the strategies work, however he does not want people telling him what to do.

In this case, I chose not to battle these issues with my eleven year old because I realized a while ago that there is a larger plan that had to take place.  Arguing with him is an exercise in futility.  This year – 2016 – I reduced the majority of my extra-curricular activities to spend time with my son to to strip down all the issues relating to his behavior that were wreaking havoc on our family.  I came to some conclusions that I will share with you in my next post.

Finally, today we had a great family outing!  We joined The Center For Autism for the annual Autism Speaks Walk fundraiser.  We were to meet up with the group of folks walking with The Center at 10:30 AM at a designated location.  Well, since this was our first year participating, I did not have history to rely on.  So we went to the area but everyone was not there as yet.  The announcer began a countdown 5..4…3…2..1… and said, “Lets Walk!” and my twenty year old son with moderate Autism took off!  He had his game-face on!

The night prior, I had primed him for this 5-K; created a social story and rehearsed our fun day.  We were set to walk!  So off he went with his 6’4″ stride.  I tried to stop him but he insisted, “Mom. the man said to walk!” so I just shrugged and ran to catch up with him!  He was already anxious with such a large crowd and we were there to have FUN! Trying to explain to him the idea of waiting for our group was not in the cards.  We did not get to walk with the folks at The Center but took some lovely pictures with them subsequently.

Living with a family with Autism, ADHD, Oppositional Defiance and other neurological deficits can be challenging.  What I strive for is supporting my kiddos in their individual evolution.  I believe that collaborating with them and helping them understand their responsibility to themselves and others is a formula that is critical to their success.  I find myself having to be extremely flexible – but always true to my values as a parent – and choosing my battles moment by moment.