The end of an era….or……he’s been playing the game for my sake

Christmas shopping has become such a chore. I used to be so stealth with my gift purchases when the kids were around using my coat to cover the booty in the cart from their prying eyes. Now, I seem to lack the energy or patience to play this cat and mouse game.

Last night we were in Target and Jacob saw me put a DVD that he only moments earlier had asked for in the cart. He paused by the cart and exclaimed "how come you are buying that for me and it's not coming from Santa".

I was SOOOO BUSTED.

Scrambling and annoyed at his alertness I said "it's not for you it's for Frank". "WHO is FRANK" he shouted.

And then, it began….I started to spin this web of lies and deceit all about this kid “Frank” that I am buying gifts for because his family cannot afford them. He looked at me and laughed and said "I guess we will see on Christmas morning WHO Frank really is". I knew the jig was up but I just kept going with the fabrication.

Part of me was relieved that maybe the hoax of Santa could be shut down now and a lot of the pressure would be off my back. The other part of me hated the notion of his childhood passing me by. He continued to berate me with “So, what does Frank Look like”, “Does Frank Like Cheese”, “Is Frank on the nice list or the naughty list like I am”. 

We get in the car and he will not give the Frank questions a rest. I make the mistake of saying, “Do you want me to show you a picture of “Frank” so you can stop with all the questions” (of course I was hoping he would just start to perseverate about some other topic) and OF COURSE he says yes.

I quickly open my Google app on my I Phone and type in the name FRANK in the search box. Then I select the Images and Viola….tons of pseudo “Franks” for me to choose from! I pick one that I think resembles a needy kid and I hope that Jake buys my continued deceit.

He takes one look and the picture on my phone which I am still holding in my hands and he says “click on that picture so I can see where it came from because I think he is some kind of an actor or something”….

Busted x’s 2!

His father and I exchange a sideways glance at one another, he is too smart for us it seems. Then I decide I will just put it all out there. I mean he IS 14….even though developmentally he is still more around the age of 10 and don’t 10 year old’s still believe in Santa?

“Jake, be honest with us, DO YOU STILL BELIEVE IN SANTA?” He was quiet for the first time all night and after what seemed like 5 minutes he said quietly “if I say no will he be mad”? I explained to him that I wanted him to just be honest (funny since I’d spent the past 45 minutes telling him one long ass lie….) and I asked him again “Do you think that Santa is real or do you think that Mommy and Daddy buy you the presents under the tree”? I held my breath as he said “I think it’s mommy and daddy”.

Sigh…..

With a heavy heart I admitted that he was correct and that Santa is in fact a long standing story and that yes his gifts are from his dad and I. “So, Santa is NOT real then mom, Right”. “Right” I said feeling conflicted but also proud that he was maturing.

Then he hits us with “Well how about Jesus, is HE real”?

He may drive me crazy, but he always
keeps me on my toes. 

   

 

     

Everything is washed mom and I did it all by myself.

This morning captain hurricane barreled up the stairs and jumped in our bed. Loudly he exclaimed, “Mom, is it time for you to get up now”? I partially opened one eye and checked the clock. Just as I had suspected, it was only 4:47am. “NOPE” I whispered.

This went on for another hour or so.  Every time there would be a lull in his movement (he crawled into our bed and began rocking back and forth which is a form of stimming he uses when he wants to calm himself down) I would think to myself “ahhhh, he fell back to sleep” only to be reminded a mere 45 seconds later that he was still wide awake and rocking. Oh and now he’s singing. Excellent. The dogs are barking? Of course they are. Husband is snoring and oblivious? Yes indeed!

Finally he jumps up and says “Mom, I’m a big boy, I can get all ready by myself, I will be right back”. I lie there listening to the familiar sounds of assorted daily grooming. My mind is already racing. I hope he remembers to change his underwear, he better brush ALL of his teeth and not just the front ones. I had to stop myself several times from busting in the bathroom and doing it for him as I have so many times in an effort to save time….and my sanity. I always want him to look his very best, he is a reflection of his father and I after all. If he goes to school with a crusty face or jacked up breath it is US that will look bad, not him. I am not having him be the gross unkempt kid in school. Dude’s got enough going against him, ya feel me?

 I laid there forcing myself to “let him be”. By my estimation, he did spend the right amount of time in the bathroom to have properly taken care of the goal. He came back in to my room and stood next to my bed.

“Mom, I am all dressed. I did it all by myself and everything is on right. Even my shirt is not backwards! I washed my hands, brushed my teeth and washed my face. Everything is washed mom and I did it all by myself”.

I smiled, hugged him so tight and laughed while repeating his words “everything is washed mom”. I felt proud in that moment. 7:00 am and I was exhausted and already overwhelmed but I was PROUD. Yes, he is going to be 14 this Saturday and yes, I know that dressing and grooming ones self is something that 5 year old's should be able to do with ease. 

We are not talking about 5 year old's here. We are talking about my sweet boy who Autism, ADHD & OCD cannot stop and who once again has proven to me that if I give him a little room to spread his wings - he will soar.

  

When mom is perceived to be a Bully.....

“Mom, you are being such a bully”.

This is what my son screamed at me from the dinner table yesterday.  

At first I was pissed. How dare he accuse me of such a terrible thing when all I am trying to do it get him to EAT.  I replied “wanting you to eat new foods (in this case, mashed potatoes and pot roast) is NOT the behavior of a bully, it is me being a loving mom that wants you to grow big and strong!”.

He sat in that moment – eyes filled with tears and said “but you are yelling at me and Bully’s yell”!

OUCH. Yeah, so THAT stung.

We were already dealing with an under-medicated Jake (thanks USPS) and a PMS’ing mother. It does not take a rocket scientist to figure out that my timing of trying to get him to eat a new food totally sucked. What was I thinking?

I told him to take a deep breath and I would do the same.  After all, we were in this thing together even though neither of us wanted to be sitting at that table in front of the ridiculously small portion of now ice cold mashed potatoes and 1x2 inch of roast beef.

I stopped yelling and he stopped crying. I bargained with him (“eat ¼ of a forkful of mashies and ½ of a bite of the beef and then you can rent a movie on demand”) He countered with “I will eat the mashies but no meat”. This back and forth continued for 13 minutes.

I finally pulled out the big guns and said in as calm of a voice as my moody, tired, crampy and elevated blood pressure self could muster “if you don’t eat 1 bite of each you cannot go on the field trip Tuesday and you will lose your IPAD privilege”.

Now before you feel the need to email me and condemn me for making threats – JUST SHUT UP.

My day to day interactions with him are always about threats. It’s like our version of the tango. I threaten no less than 16 times a day to take away / throw away his toys, movies, technology and so on if he does not comply with my wishes of homework completion, cleaning up his mess, putting away his toys, brushing his teeth…..pretty much everything I ask him to do other than breathe is met with an argument (Ahhhh teenagers). ANYWAY….

I threatened him with the non-participation in the field trip and he must have thought about this for 5 more minutes (if you are keeping track we are now at the 37 minute mark of this spectacle). He then calmly grabbed his fork and said “I have a great idea, I can put the beef on the fork WITH the mashed potatoes then I won’t have to take 2 bites like you want me to, I can do it MY way”.

Sigh…..

Jake - 13 years old. Sitting in the lobby of a restaurant where there is nothing on the menu his majesty will try. 

"The sunrise is golden and lovely

The birds chirp and twitter and tweet,

You woke me and asked for some breakfast,

So why the f— won't you eat"?  

  

~ Adam Mansbach author and genius behind 'You Have to F—ing Eat'

Autism and Vanity

My youngest son is beautiful. He is captivating and handsome and has dimples to die for and you can get lost in his eyes.

 My youngest son is also totally awkward looking. I joke a lot about Jake's physical traits from his adorable snaggle fangs in the front of his mouth, his low hairline (yes, I know he gets that from ME), his unibrow, his ears and his awkwardness as a whole. He is 13 1/2 and this is when most boys are awkward looking.... But as his body changes he has started to break out on his forehead.

This morning I was using a cream on his little face to clear up his breakouts and I was thinking to myself, is this MY vanity issue here? Does he even CARE? I am so overly protective of him in terms of things that might get him picked on in school like his clothes, shoes, etc. He could care less if he wears $5.00 payless sneakers or the Nike’s we make sure he has. He does not need name brand anything – it is meaningless to him, but we always make sure he looks his best because he has enough going against him in life being on the spectrum and having such severe ADHD and of course being an adolescent which has it’s own levels of trauma.

My point here is I was having a moment of feeling like I am projecting my own insecurities onto this kid who really when it comes down to it cares only about a few things….movies, YouTube, his IPad and his favorite TV shows. Then, as I was applying the ointment he looked up at me, grabbed my cheeks and said "Mom, I love you for making my pimples go away but maybe you should buy Proactive instead, it worked for Katy Perry”.

I have his back, vanity may play a role but if I can fix one thing to eliminate him from getting picked on I will do it.  

All this Drama over an Orange?

The sun was shining and the cool yet comfortable winds were blowing outside. Inside our cozy kitchen however, there was a storm a brewin’…

I asked Jacob to eat an orange for breakfast. OH THE HORROR!!!! There was a 10 minute dance of him hiding in the other room and faking a “very sad belly”.

Finally he acquiesces and sits at the kitchen table. I place the peeled clementine (a tiny version of an orange for those that are not in the know of such citrus categories). He looks over the small pieces of fruit as one might if they suspected they were being fed dog shit.

“I will eat one little piece and that’s all!” He puts it in his mouth and gags. He then swallows it whole. “THAT’S it! NO MORE” he exclaims.  This is his first move on the poker game of breakfast. I see his hand and I raise him the loss of his IPAD for the day. Suddenly, he will try “just one more”.

This card game of his move vs. my move (or threats to lose his IPAD, BLUE RAYS and on demand) goes on for the better part of 5 minutes and he successfully eats 4 small portions of the already small clementine. I see myself as the victor here.

Jake has very specific eating habits which we have discussed previously. His current repertoire consists solely of MILK CHOCOLATE Ensure, Strawberry Blast or Kiwi Strawberry Danimals, Scrambled Eggs, White Bread, Peanut Butter, McDonalds ONLY Chicken Nuggets and French Fries from a very small list of establishments and his only drinking preference is Lemonade (Turkey Hill).

While my prince is in school however, his teacher has been able to get him to try a laundry list of foods that no matter what we do at home he refuses. He has eaten Snap peas, homemade strawberry ice cream, grilled cheese (this just about broke his soul but he did it!) goldfish crackers and pastry.

We plan on having his exceptionally dedicated and loving teacher come over this summer to work with him on eating these foods AT HOME as well. One thing that is common with Jake (and  kids on the spectrum in general) is that they are creatures of habit. He will eat eggs all day long at home but if we go to my in laws house he will not. Jacob also does not like to eat when other people are visiting. He has been known to very subtly (HAHA) say to our guests when he is hungry “Are you leaving now”?

I have dreams of the day that Jake sits at the dinner table with our extended family in front of a plate of lasagna, meatballs, salad and garlic bread.

THIS is something I want in his IEP. J

Up next on Mission “GET JAKE TO EAT NEW FOODS” is ¼ of a ham or turkey sandwich.

  If you live in the neighborhood and hear screaming and crying around noon I apologize in advance, I will try and stifle my tears.

Pray for us. :)

Text Messages I receive from his Teacher when he try's something new to eat in class. Sometimes there are successes and sometimes....there are failures.

 

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