I am dedicating this blog post to Jacqueline & Christopher Laurita of The Real Housewives of NJ and all of the newly diagnosed parents out there.

Here is my Top 5 Things Every Newly Diagnosed Parent Should Know

My heart was on the floor in pieces last night watching the Real Housewives of NJ when Jacqueline Laurita began to sob for her precious son. I am sure that I am not alone when making that statement. Those of us with children on the spectrum have all been in that horrible position.  Our children are physically in front of us but yet, he/she has been kidnapped.  Stolen away from us right under noses.  We shared a “collective grief” last night wondering what has happened to our missing angels.

We are left with the pieces. We spend the rest of our lives trying to put them back together again piece by piece.  We know that our kids will never how they once were.  We are ASD parents, the toughest parents known to man! We adapt, we overcome and we use our challenges to strengthen us!

In light of what occurred last night, I want to send out a blog post to all of the newly diagnosed parents!   Welcome to our club we always accept new parents with open arms!

1.  THE KIDS DO IMPROVE- I remember in 2003 when my daughter was first diagnosed that I wanted to throw every therapy at her.  I was convinced that after a year or two or three of therapy she would be recovered and Autism would be a thing of the past.  After years of treatments she still has the diagnosis of Autism but she is so very much improved! This happened in baby steps. The same way that your hair grows, but you never seem to notice that it is longer.  The kids that I know have made leaps over time. Please keep in mind that the kids DO IMPROVE and stay strong, but please be patient.

2.  CHANCES ARE THAT IF YOU INVESTIGATE ANY UNDERLYING MEDICAL ISSUES THIS WILL LEAD TO MUCH OVERALL IMPROVEMENT- Please let me be clear.  Some kids with ASD have clear gut issues and inflammation.  Other kids don’t seem to have as much of a medical piece.  It is my opinion that every parent owes it to himself or herself to have their child tested for allergies and gut issues.  I will speak for myself. In my case, my daughter suffered needlessly for 8 years with both environmental and food allergies as well as other types of inflammation.  She would lay in bed and cry and scream every night. Many times ASD kids scream and have behaviors because they are in pain!  Finally, when my daughter was eight the results of an endoscopy revealed she had been suffering from a condition called Eosinophilic Esophagitis AKA “EE”. This is a serious condition that results in inflammation of the GI tract.  We put on her a specialized diet, put air purifiers in our home and placed her on allergy medication. Once I was able to get a handle on her gut and environmental allergens was she more open to learning and more improved. Additionally, we recently purchased noise-cancelling headphone, which has reduced her negative behaviors substantially.  A large majority of people with ASD report heightened senses.

 3.  YOU ARE THE QUARTERBACK
There are many well-meaning professionals in the “Autism” world. How do you know who to listen to?  It is overwhelming to the point of being paralyzed. At the end of the day YOU are the expert in your child and the leader of his or her treatment. NOT the school, NOT the pediatrician, YOU! I know that you may not feel that you know what you are doing but if your gut tells you to wait, wait! You can always go back and try something else or change the game plan at anytime.  Your child needs you to advocate for them and nobody is more committed to that than you.  It is also in your best interests to know what may or may not be happening with your child and what life may or may not be like for them.  I am going to recommend some books that have helped me:

·     Healing and Preventing  Autism by Jenny McCarthy and Jerry Kartzinel, MD. This book was does an excellent job of explaining the physical symptoms of Autism in a way that parents and caregivers can understand.
     Carly’s Voice Breaking Through Autism by Arthur Fleischmann with Carly Fleischmann.
Arthur does a great job of telling the story of what a family goes through when a family member is on the spectrum. Carly who is diagnosed with ASD explains in plain terms what it is like to have Autism and what she goes through. A MUST READ!
     The Autism Revolution by Dr. Martha Herbert.
She comes the closest to understanding Autism from the medical perspective.  A great resource.
This is only my opinion but I think these three books capture Autism in a nutshell and will provide you with a solid foundation of information. These books have been very helpful to our family.

4. MOST ASD PARENTS ARE GREAT! YOU ARE NOT ALONE!
Having a child on the spectrum automatically bought you a ticket to our “club”, which means that most of the time another ASD parent will be there for you no questions asked to support you and give you their best tip! It is the silver lining on the dark cloud.  We are all on a mission of a higher purpose; this does not leave time for gossip and other negative activities. We know that on some level we are all for one and one for all. ASD parents to date have made enough noise that we finally have the medical community researching finding bits of evidence to help support our efforts. ASD parents have no hidden agenda except to help each other re-capture our children.  Please use other parents as a resource it is the best and quickest way to get information. Please remember we are all behind you and you are NEVER alone! I personally would go out of my way in a hot minute to help another ASD family!

5.  AUTISM IS GOING TO CHANGE YOU. HOW IT CHANGES YOU IS YOU IS UP TO YOU.
Autism changes everybody it touches.  It has the power to decimate you financially, socially, mentally, emotionally and physically.  Please always remember this diagnosis can’t destroy you without your permission! You will go through stages and have a range of emotions. THIS IS NORMAL!

Autism is making a life-long commitment to you and your family. Autism will be faithfully by your side 7 days a week 24 hours a day for the rest of your life. You get decide the role this newest member of your family will play.

Take things slow and on your own terms! This is a marathon not a sprint and as I stated before, you are in charge! When my daughter was first diagnosed, and for many years after, I was intent on “fighting Autism!” Fighting gets exhausting! Please don’t waste time “fighting” Autism.  TO BE CLEAR, PLEASE DO EVERYTHING TO RECOVER YOUR CHILD FROM AUTISM, but when you are ready you are going to have to EMBRACE AUTISM on your own terms.  That means deciding exactly how it is going to affect you! This process is an evolution that ebbs and flows over the years. You may feel that Autism is a “lemon”; however, eventually you will make “lemonade”. How sweet it is depends on you!

Please always “BUFFER” yourself!

 


Comments

Anna Olivero
10/06/2012 9:58am

My name is Anna and I am a mother of a 6 yr old little boy on the spectrum. He was diagnosed in 2009. I really apprecaited reading this post. My husband and I often feel very alone in what is happening in our family. Just recently we have been experiencing some behavoir issue with my son...(biting, hittting) these things are happening more at school than at home. So we are not sure what is happening at school that is creating this behavior. We have open communication with his teacher but it just seems like they can't tell us what is the antecedant(probably spelled that wrong)of the issue. The principal's action plan is to send my son home when he is having a "bad day", my husband and I and the teacher all agree this is not productive for my son. The biggest thing that bothers me is that I can't figure out what is setting him off if I'm not there. I plan on getting these books you recommend, I have read some others and it does help with dealing with Autism.

Reply
Jena
10/07/2012 12:38am

Anna
Thanks for writing sounds like the school is not a good match for your son. They should not be sending him home for his behavior. I suggest getting an advocate and exploring a more appropriate placement for him good luck!

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