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