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

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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