Unspoken Hero - The Autism Dad

I read this statement the other day and it stuck with me:

 “Studies show that Parents of children with 
autism spectrum disorder have 

nearly 24% chance of getting divorced”.

I am married to my very best friend. 

He is the one person that knows me better than anyone else in the world - all my flaws, fears, weaknesses and also my strengths. He never ever try's to edit me and my big mouth (although I KNOW he wishes I was more "ladylike"). He makes me laugh. He taught me so much about life and love and forgiveness and dedication. He loves his children with every ounce of his soul (which is SO superhot btw). He works harder than anyone I know. He is funny, smart and passionate about the thing and people he cares about. He is the most handsome man I have ever laid eyes on (that does not live in my DVR of course, because HELLOOOOO my tv boyfriends are yummy). Most of all, I love him because he made me a Mother. The stepmom to his 2 children from a previous marriage and the mom to our child together, Jacob.  

Does this mean he is perfect? HELL NO. He snores like a freight train, his feet smell like the depths of hell, he is forgetful and often socially inappropriate. He is the cheapest person I have ever met (but I need that cause I am a shopper), he is a workaholic and he watches FOX news.

So, why am I professing all of this today, a random Friday in May you might ask?

Simple answer is, the little things are what matters, I always say that.

I fell in love with him all over again last night. He does not even know that I was affected by this simple action but I was.We got in his car after dinner out and he said to Jake "I have been listening to some music that I know you are going to like". At first Jake protested "No I won't..." but Jay just put in on anyway. He was right. Jake was enthralled and asked him to play it again. It was an early Beach Boys record that I had not heard but he knew Jake would appreciate it. 

There are father son things that he will never get to do with Jake. Fishing, having a catch, racing go carts….they are not things that Jake likes. I have always wondered if not having those experiences with him bothered Jason because he never let on that it did. He has all of those things with Christopher (17 – the middle offspring) so maybe he does not miss it with Jake, I was never sure.

However, MUSIC is a common bond that they share with one another.  Since Jake was little he and Jason have always had a special and very simple bond. Jason has a quiet patience with Jake that I have always been jealous of because well, I am neither quiet nor patient. Jake at age 13 still jumps off the couch when he hears his dad’s car pull up in the drive way. He exclaims “Daddy’s home”!!! The minute he walks in the door Jake starts with 20 questions “Dad, is the Smurfs old or new, Dad, who likes Scooby dooby doo - you say you do”, Dad, are you gonna go get a coffee or a beer”? 

 Jason answers every one of Jake’s questions. OVER and OVER and OVER.

I get upset with Jason because sometimes I feel like I am the only one disciplining Jake, doing his homework, getting the calls from school when he acts out etc. but the reality is that as parents of a special needs child we both have a specific role to play in his development.

I think that part of the reason our marriage and friendship is so strong is because we know our roles when it comes to Jake and we play them to perfection. Jason is Jacob’s muse and I am Jacob’s structure. The role of a father in the home is often underrated. Mom’s (myself included) often go on and on about how much we do and while that is true, the father’s that are present in the lives of their children showing them love, support, compassion and humility are equally as vital in the lives of our kids.

I am a lucky woman to have such an amazing husband and my kids are even luckier to have such an exceptional father. I don’t know a lot of things for certain but I know for a fact that in the unlikely event that Jason and I would ever divorce it would not be the result of having a child with Autism. I suspect it would be because he refuses to put the seat down or pick up his dirty socks.

Jason and Jacob
Spring 2014

And the Award for biggest pain in the ass goes to.....

When Jake was born I knew there was something not quite "normal" about him. His development was very slow. At 17 months of age he began treatment 3-4 times a week. OT, PT, Speech, Sensory and Cognitive therapy became part of our daily life.

In September of 2003 we were told that our son had Autism and that his future abilities were unknown - there was a high chance that he would not speak in full sentences, run, write or live independently.

10 years, tens of thousands of dollars and 10 million tears later my son is living proof that Children on the Spectrum should never be counted out. Parents that are given that terrible news need to know that while it may feel that way at the time - AUTISM is NOT a deal breaker in the future accomplishments of our children.

With the right early intervention and therapies your children may recover lost language , gain and develop new skills and blow you away with their abilities.

My boy has been in a self contained Autistic Support classroom since kindergarten. He attends public school and this year for the first time he was placed in a Mainstreamed Science and Social Studies class. At first there were some struggles but he got the hang of it. Homework was hard - studying for tests was often a battle but HE DID IT. Today he was honored with not 1 but 2 awards in front of his 6th grade class, much of the faculty and other parents. Jake won Most Improved Student certificates for MATH and for his REGULAR Education classes of Science/Social Studies.

I am over the moon proud of him and his accomplishments. As we look forward to ESY and then 7th grade this fall I am anxious to see what other "gifts" he shows the world.

It might not seem like much to you - but to my family it means everything.

Jake - age 12, 6th grade 2013

 

  

The Perfect Storm

Forgive me father for I have sinned.....it has been 6 months since my last BLOG entry and I gotta tell you, it's been one hell of a 6 months!

When we last gathered here in cyber space to discuss the antics of my son Jacob we were living in a hotel as a result of hurricane Sandy.

Now we are living in a war zone as a result of the perfect storm of AUTISM, ADHD, PUBERTY, END OF THE SCHOOL YEAR AND SEVERED ANXIETY and NO ONE is safe.

There have been what I would approximate to be hundreds of funny comments or awkward situations that Jacob has said or put us in over the past 6 months but I will just start with the events of the last few weeks.

We had to switch Pych docs for him because I have different insurance with my new employer - we were on a waiting list for close to 6 weeks with this new person.

I leave work early, take Jake out of school early and we head to the appointment. After a 45 minute wait in the lobby the Dr. calls me into his office to speak without Jake. He sits me dows and says "so...what do you want me to do with your son?". I look at him puzzled and reply "ummm, manage his medication and make the changes you feel are necessary". He pushes his glasses atop his head and says "Look, if you are here expecting a miracle you are in the wrong place lady".

I'm gonna let that sit with you a  moment......Ok pick your jaws up off the floor now and keep reading.... Sooooo, all the blood in my body rushes to my face and I visualize myself climbing across his desk and ripping his flesh from his over paid smug body - but I stop myself.

"I am going to pretend you did not say that to me Dr. I have been waiting over a month to see you and you came highly recommended - which now I have to be honest is confusing to me".

He cleared his throat and looked at me - shocked and smirked. "I know my shit when it comes to kids mom". (guess who hates being referred to as MOM by people that are not my children.....that's right, ME). I find it to be condescending when teachers or doctors do that. I have a name - USE IT.

I reply "Well, you may know your shit about kids dr but clearly you know nothing about dealing with the parents of your patients". He began to back peddle and realized the error of his ways (or he looked at the chart and thought "Oh hell....this Bitch is from the West End of Norristown...) Whatever the reason he softened his approach and said that we needed to be a "TEAM" regarding my son's treatment. I agreed and swallowed the vile word vomit that was creeping up my throat.

After another 15 minutes he handed me his proposed medicinal changes and I stood to go get Jake (I mean this was HIS appt right?). Dr. personality looked at me and said "by the way mom, you might want to call your own dr about getting you some Xanax or Kalonopine".

The medicine change has not been successful and I am back on the hunt for a new Psych doc for him. I am on waiting lists with both CHOP and DUPONT and I basically feel like I am all alone on a sad little island.

There are simply not enough resources available for our Special Needs Children. Families are in crisis all over our country as we wait for our coveted slots with the local children's facilities. All the while, teachers are calling, texting and emailing daily complaints about the behavior of the child, family members are alienating themselves because they cannot handle the chaos that is your child, mothers and fathers are fighting just to keep it together and the person at the center of all of this emotion, scolding, fighting, confusion and red tape is in a word SUFFERING.

Something has got to change people.......


Sometimes the only peace this child gets from all that is running through his mind is when he sleeps.



Every 11 minutes, a child is diagnosed with an autism spectrum disorder. 1 in 88 children in the United States is on the autism spectrum; 1 in 54 boys. - See more at:

http://action.lightitupblue.org/c.arKQI4MBIgI4E/b.8566551/k.66A7/Give_Hope_Take_Action/siteapps/advocacy/ActionItem.aspx?msource=liubpetlb#sthash.6UggMcqz.dpuf









 

Hurricane Sandy aint got nothing on Jake....

There is no doubt that these past few days have been disturbing for millions of people up and down the North East. Death and unreal distruction the likes that we have never seen in our neck of the woods. Our home has been without power / heat for just shy of 48 hours and our basement is flooded.

Many would say we got lucky. The weakened trees all along our property line did not crash into our home, our cars or onto the roadway or our neighbors property and no one in my life suffered any injuries. So YES, those people would be correct - but those "many" do not know JACOB.

Change of even the smallest form can turn him on his ear making the rest of us collateral damage. Needless to say, having no power, heat, Internet connection or normal routine this week has caused living with Jake to be it's very own special "state of emergency". I am considering asking the Governor to declare his behavior a disaster!

First starts the anxiety - legs shaking, chewing on his cuticles. Then comes the NONSTOP questions "ïs there going to be a hurricane NEXT week too?, "How much longer will the power be out", "can you tell PECO I need an Internet connection"? Then comes the crazed actions of running around the house snorting and shouting. It's all very exhausting, stressful and yes, annoying.

We re lo to hotel and while most children would be excited - he was nervous. " What about the doggies mom, they will miss us" (very true even though they have been checked on 3 times in 24 hours), "I can't take a shower in that hotel mom, the water will feel different", "what if the power comes back on while we are at the hotel, will PECO turn it off and give it to another family that is home".

These questions have been rapid fire with no end in sight. I have lost my patience with him more times than usual and I am surprised I still have a voice to use to yell at him. 

Today, I picked him up from school (they closed early due to no power) and brought him back to work with me. During the few hours he was there he was exhibiting more of the same behaviors. At one point my VP walked into my office to say hello to him and he proceeded to say "we are staying in a hotel cause we have no electric, but it's ok cause mom said it's not like a whorehouse type of joint". THEN he strikes up a conversation with the PRESIDENT of my company. He asked Jake "what can't you wait for about being back in your house when the power is restored"? Without skipping a beat Jake says "not sleeping in a bed with my mom, she takes up too much room and I think she tooted in her sleep last night".

My patience, ego, nerves and sense of humor have all taken a beating this week - and it was a result of HURRICANE JACOB, not Sandy.

Jake - our own personal National Disaster

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Please Keep Your Arms and Legs Inside the Ride at All Times

Starting school can be a bumpy journey for any child. Many kids in our area have already started back to school. Our middle son started his Sophomore year of high school last week and our daughter began her Sr. year of college just this morning.

Externally, I have been enjoying looking at the pictures my friends and family have posted of their offspring heading off for another school year. Internally I have agita and anxiety over Jacob's entrance into 6th grade and I am not alone in this fear.

Jake is nervous. Jake is acting out. Jake is scared.

 

Over the weekend I started to see the familiar glimmer of anxiety and stress re-appear in my little man's eyes. I was hoping that since he had such an AWESOME summer in terms of his behavior that maybe we were turning the corner. Sadly, I was wrong.

 

We shopped for school supplies on Friday and getting him to commit to a folder and binder was like pulling teeth. It was as if a light bulb went off and he realized that he HAD to go back to school. He started talking about how he is sad that summer is almost over and that he "did not swim enough". Mind you, he refused to get in the pool more than three times all summer so I am not sure what that was all about.

 

When Jake gets anxious he acts out. He speaks at a frenetic pace and he often appears to be out of breath. He chews on his fingers and bites his cuticles raw. He pushes more boundaries than normal and he sleeps even less.

 

We suffered through 5th grade and are lucky we made it out alive.

 

We simply cannot survive another year like last.  He struggled with the transition into middle school, with new faces, new people and with his new teacher. They were not a good fit for one another to say the very least but that is another blog for another day....Anyway,  

 

Saturday afternoon I took Jake on a date along with my mother to see Diary of a Wimpy Kid - Dog Days. In the film the main character Greg finds himself in alot of hot water. There is one scene in particular when Greg causes tons of drama and his father comes to get him. The dad does not yell at him, he does not spank him - he just tells Greg that he is disappointed in him. During the film Jake kept asking me if Greg was going to get grounded like he does from time to time, I said I guess not - sometimes knowing that your actions disappointed your parents is worse than any other punishment you could receive.

 

 Cut to Sunday morning, I am on the phone with my sister in law and I look out the window to see the police approaching my house. I end the call and run down the steps. I first spot Jake "hiding" under the covers telling to the cops through the window "You can leave now".....

 

I open the door and I am told that ONCE AGAIN, my son called 911 and hung up. The township police know that Jake is Autistic but they do have to report whenever there is a call/hangup. They were gracious to me and I could see that they understood. I made Jake come to the door and apologize to the officers for wasting their time and acknowledge that he KNOWS he should only call 911 in the event of an emergency. He did come to the door and he did apologize but he also ran off shouting "Mommy...are you going to beat me to a pulp when the cops leave"? PERFECT.

 

Once the coppers hit the pike it was time for a good old fashioned ear splitting yell fest. As I was shouting at the top of my lungs things like "WHY would you call 911 again, and Dude SERIOUSLY, you have GOT to STOP this craziness, and THAT'S IT you are grounded it dawned on me that he has experienced these reactions from me for YEARS. He often will bring up when he was 4 years old and stripped naked out front then ran all the way around back and threw all his clothes in the pool - brand new Nike's and all.  "Mom remember when you smacked my naked butt and I cried myself to sleep". Um, YES I do....I cried right next to you because I felt so guilty for smacking your hiney! I never understood what parents meant when they said "it will be worse for me than for you" but in that moment some 7 1/2 years ago, it became crystal clear to me.

 

I decided to stop yelling at him about calling 911 and sat next to him and tried a more calm approach. He did not know how to handle this calmer, gentler mommy. We talked about his actions and he said he was sorry and I said I was sorry for yelling. Then he asked me if I was disappointed in him. I told him I was not disappointed in HIM but I WAS disappointed in his poor decision.

 

Later in the evening as we unwinding I told him he needed to get off of his IPOD and start settling down for bed - he came back with 50 rapid fire questions and I simply said "School will be starting next week and you need to get back on your school night schedule of no computer after 7 and no Ipod after 8. Well..... I could see him starting to spiral off the rails again. He was yelling, pulling all of his movies out of the cases, breaking cups, taking markers out and writing on things that are not to be written on like our DOG. She is so dumb she just stood there and let him draw a line on her fur....

 

I started to loose my cool again but I opted for the approach that worked earlier. I cleared my throat and in a soft voice I asked him to clean up his mess, put away all the markers and lie down because he needed to go to sleep. He became more agitated with me and started jumping on the couch and laughing at me. So....mother of the year that I am, I might have thrown a pillow at him.

 

Yeah, I know I know.... but I was PISSED.

 

Angry mom made her return and she was louder than earlier in the day. I can no longer give him a whack on his butt because he is too fast for me and his stick like legs are lethal weapons and I am not about to get kicked in my face by his manic body so I cornered him on the couch and sat on him. YUP...all 120 pounds of me (SHUUUUUUUT UP) sat on him. He stopped flailing like a fish out of water and I looked him in the eyes and shouted "NOW I AM DISAPPOINTED IN YOU".

 

Feeling like I had won the battle I went upstairs to my room for some "distance". Then the guilt settled in. I opened up my bedroom door and called down the steps to him, I could hear him crying. I asked him to come up to my room and lay with me. "Are we going to have a talk mommy" he said. "Yes, we are" I told him.

 

I probed him with questions about why he was behaving like this again when he had been so great all summer long. Finally he said the sentence that broke my heart in two and I will NEVER forget for the rest of my life. "I'm afraid when I go to 6th grade I am going to do everything wrong and get in trouble all the time and you will ALWAYS be disappointed in me".

I held him and kissed him and said all the things that mom's do to make their children feel secure. He was feeling legitimately fearful and anxious. As a parent not being able to ease his anxiety about certain things is the hardest challenge of all. Worse than dealing with ADHD outbursts, medicinal struggles or his rigid approach to EVERYTHING thanks to his Autism.

 

Finally when he calmed down and was leaving my room he said "Mom, we should make a deal that I won't disappoint you and you won't disappoint me".  Puzzled I looked over at him as said "How would I disappoint you"? He waitined a moment and then said, "by yelling and screaming at me when I am bad, not letting me curse when I want to and not letting me get a movie when we go to the store all the time". "Well dude, it looks like we are BOTH in for a long road of disappointment in one another then".

And so it begins.....another school year, another 180 days of homework, notes home, phone calls from teachers and the dreaded IEP meetings....I think that if I sucessfully get through the next 6 years until he graduates high school I will be able to take on his college years with no problem. Right?

 

 



We have funny kids.

Teressa (center) is a Sr. at Kutztown University with a double major in
 Elementary Education and Special Education

Christopher is a Sophmore at Ren. Academy and active on the Golf Team,
Baseball and flirting with girls

Jacob is entering 6th grade at East Norriton Middle School
and he is an expert at leaving destruction in his path.

 

 



 

  

 

 

 

  

 

 

 

 

 

     

How much is that hiney in the window.....

When I came downstairs this morning I KNEW he was going to be in rare form.

I found him crouched in the ready position as if he was about to run a race atop the coffee table in just his underwear with a t-shirt over his head looking much like Bevis from the MTV classic animated series Bevis and Butthead.

 I said "WHAT are you doing" he looked up at me startled and replied "What are YOU doing?" I opted to simply ignore him and proceeded to the kitchen to make a cup of hot tea for the road.

I heard him barrel up the stairs to no doubt wake his father from blissful slumber. For a child that weighs in at a mere 68.5 pounds he sounds like a herd of buffalo are running through our home.



Classic Jake. Always scrunching his face up when he smiles or laughs and ears for days.....

I carry on with my morning routine and call up the steps "Jakey, I am leaving - Have a good day I love you and BE GOOD for Nan" to which I get no reply. No surprise, he never does what I ask him to do anyway.

I load up my car with my purse, laptop, work papers etc. I settle in for my commute to work and reverse my car out of the driveway and THAT is when I see it....

The curtains in the living room flutter and a little tiny white ass appears.

  I hit the brakes and stare at the window in shock. My inner monologue starts running...."that little bastard just mooned me! OMG, he is so grounded!". Then the laughter starts and I am in tears at the visual of my little boy's pasty skinny rump bidding me adieu.

He quickly pulled up his underpants and looked out the window to make sure I was still watching him. He smiled in the way that only he can....scrunched up face like he is smells something horrid. I waved at him and drove off smiling the whole way to work.

Parents of  disability free children might be ashamed at this type of behavior.  However, "mooning" someone is what a "neuro typical" adolescent boy might do. To see Jake act in a "typical" manner
gives me hope that he is in fact making progress.

I know it may seem odd to many of you and that is fine with me. Jake is OUR cross to bear and sometimes the rules of society simply have to fall by the wayside.

Besides....it really was hysterical.

Mom why is your face so red?

I'm going to just bottom line this whole blog for you. Jake was born to have his own show. The things that he says, the comments he makes, his lack of filter....all make him the kind of character that screenwriters dream of.

He is relentless in his craving of attention. You would think he was never shown any by the way he insinuates himself into the conversations of EVERYONE around him and simply monopolizes the dialog to turn it into something that only HE cares about. Uh-Oh...is that his Autism showing again?

Affection, attention and all out adoration are things that this child has never been short on. Between the constant nagging him for kisses and hugs that he gets from his sister and I and his grandmother following him around like a puppy doing whatever he asks (or at times demands....cause he's got it like that with her) he does NOT lack for a showing of love.

A few weeks ago he came with me to the nail salon.  While I am getting a pedi he made "friends" with the elderly African American lady sitting next to him waiting for her daughter. He taught her all about his Ipod touch and showed her several "clips" of some of his favorite shows. She was very generous and listened to him patiently and basically gave him free reign over the topics they discussed. The whole time this was happening I was  WAITING for the bombs to start to drop. See, it NEVER fails that at SOME point during a seamlessly nice discussion with a stranger Jake will say something that is SO inappropriate I wonder how Child Protection Services has never been called on us.

However, on this day, Jake was being a perfect gentleman and I think to myself that we might actually escape embarrassment today. Ummm, Yeah right.....the very kind older lady got up to leave with her daughter and Jake yells (because he only has ONE volume and that is LOUD) "see ya later old looking Oprah".

I of course flush 50 shades of RED and begin yelling at him through my gritted teeth (you know, that thing that ALL mothers have mastered) while HE is OBLIVIOUS to what he has said and the lady,her daughter, & the rest of the salon patrons/employees have a good hearty chuckle.

The Vietnamese nail girls all start chatting with one another in their native tongue and he strikes again with "Mom, why are they all speaking jibberish and not American" at this point I am making a mental note to myself to purchase the Rosetta Stone system to learn Vietnamese so I can tell if they are talking about me and now, my kid. He caps off the day as we are leaving by asking one of them if they know Ni-hao Ki-Lan....THANKS NICKELODEN!

A few Saturday's ago...Jacob came rushing into the kitchen to tell his dad and I about a movie he watched on TV called "Wizard of Cocks". Jason, my mother and I all exchange very alarmed glances and my brain starts racing and finally hilarity ensues...

Jason - WHAT is the name of the movie?

Jake -  Wizard of Cocks

Jason - Say the last word again

Jake - Wizard

Jason - No the LAST word, are you saying COCKS - spelled C-O-C-K-S?

Jake - YES (growing frustrated at how dense his parents clearly are)

ME - WHAT THE HELL CHANNEL DID YOU HAVE ON? (sidebar....before you lecture me about parental controls, I have them in place....but he keeps figuring out my password
and resets it!)

Jake - FX

Me - (thinking internally)....FX shows PORN now?

Me - who was in it?

Jake - The guy from Ricky Bobby (Talledega nights)

Then the lightbulb goes off for the three adults in the room.....

My Mom - Jakey honey, do you mean DEWEY COX?

Jake - Yeah, Dewey Cox.

YUP....try as you might you just can't make this shit up.