Advice for Siblings

For the next several posts I will break down some common concerns and issues that many siblings try to address concluded by recommendations on how to handle them. With the great help, advice and counsel even for me by Henry Ford Behavioral Health Services, Greg Oliver, who is a social worker that has dealt with children and their siblings affected by Autism I hope that you will find my postings helpful.

Challenge #1: "Why won't he play with me?"

It’s not easy having a brother or sister that you can’t play with especially, if you are close in age and don’t have another sibling that will play with you. What is worst is that “play” to one sibling means the total opposite to a sibling that is autistic.

So, what happens when you can’t play with your sibling? Well, our solution is that you find what out what makes your sibling happy and then you can make fun out of it. For example, my brother was obsessed with radio’s and fans. You never saw him too far away from one. What I did to make a game out of his obsessions were singing along to the music on the radio or making noises and talking into the fan after he plugged them in. This way we both enjoyed them and I learned how to play with him. My best advice is to learn how your sibling with autism plays and adapt to it by making it fun for you.

Autism and the GOD connection

When you have a child or sibling with special needs sometimes you don't know where to turn for answers. Some families may turn to God for direction. As for my families’ religious activities/services, for a long time my parents didn’t go to church. My mother was raised in a Catholic church and this particular church was not accepting to frequent outbursts or an antsy young boy. Frankly, many people would roll their eyes and make you feel embarrassed. But, knowing that church is really the house of God and having a strong background in faith and religion, I continued attending church services, but at a Baptist church that I stumbled upon through a friend. I accepted God as my savior and it changed my life forever.

I knew that by attending church it would be to my parents benefit so, when I turned 16 I started attending a Church of Christ (AKA- Non- denominational) with my aunt, uncle and cousins in Livonia. It was a breath of fresh air and very welcoming to everyone. My parents started attending regularly, became members and even started to bring my brother, Brian. I think that Brian really enjoyed the interaction with the people but, sometimes he would stand up and blurt out, “I want to go home now… I’m done!” however, the people would just ignore him and smile, Pastor Mark doesn’t even blink and continued to preach on like nothing even happens. That right there is a sign of a great church and one that you are proud to be a member of. Above all, church should be the place that anyone and everyone are welcome and if you can’t go to church, then where can you go?

An Autism Journey

Wow.. Never in my life did I think that I would write a book and now my wildest dreams are REALLY coming true. With the help of one best editors, I have been able to document my chaotic life with all of the ups and downs of having an autistic brother. The funny thing is that when I was in elementary school I did write a short picture book for the young author's conference and it was entitled, "Living with a thing called Autism". So, it turns out all of long that this is what I was meant to do.

Speaking about my book… throughout the process it's been a learning experience so eye opening that it almost discourages you from the submission process. Your probably wondering why, right? Well, just because you have a great idea for a book and you have the time to write doesn't mean that a agent or even publisher will pick up on your story. Instead you will be stuck reading generic rejection letters saying that, "You are not quite right for us" and then goes your MoJo to pursue your dreams. I plan to do speaking engagements whenever possible (let me know if you want me to speak to your group!), be aggressive with my promotional plan and most importantly create a platform that allows me to be positioned as an expert in what I call the Sibling Autism Movement.

My childhood was rocky at times and sometimes revolved around my brother and what type of day he might have. He required a lot of attention and extra love. My brother Brian tended to always draw crowds, but instead of attracting them for positive reasons, he had negative attention due to behavioral outbreaks. Some of it I just blocked out completely and the others are the moments that defined my life and started to build my stronger character. I want to share my story about the good, the bad and the ugly times. My story is uncensored and reveals all. This is an inside look about what I have learned over the past 28 years about having a brother that has Autism and how it has affected and completely changed my life. The purpose of this book I hope will give the siblings that are confused and forced to deal with this disease because this is part of their life answers. Also, to educate the parents who have a child (or multiple children) who are Autistic and have no idea what it’s like for their normal child to live their life and experience adversity because they have a sibling that is different. My brother never asked for such a life so, as siblings we need to make a pack, bond together and educate others about Autism. I always say, "Those dirty looks that you might get from people in public are teaching moments about what autism is and how it affects someone’s life."

"Make a difference, be inspired and be someone’s inspiration. "

(Above photo is a picture of my brother Brian)

Restrictive Diets and Autism, do they work? Researchers say, "No!"

A story ran this morning in the New York Daily News that reports for years, parents of autistic children have promoted restrictive diets as a way to manage behavioral problems, but a new controversial report by an expert panel says there is no evidence to support that claim. The most famous parent to claim that early intervention and treatment along with a restrictive diet brought her back to communicate like a "typical" child is Jenny McCarthy. Many people know that I love Jenny McCarthy and respect her tremendously for all of her work that she has done to bring attention to Autism. Jenny found the ammunition she needed in the form of a strict dairy free and wheat free diet, an anti-fungal medication, and in various forms of behavioral therapy. She also enlisted the help of a DAN! (Defeat Autism Now!) Doctor. So, if this worked for Jenny's son Evan along with other parents, then why would reports claim otherwise?

The answer is simply the kind of anecdotal evidence that parents report of the "diet" curing their child doesn’t fly with doctors and scientists. Until they can find more concrete results, experts recommend sticking to traditional forms of care, like hyperbaric chamber treatments, which have shown promise in some cases. The wide array of behavioral issues seen with autism cases only compounds the problem of figuring out what diets (if any) could help a patient. With my brother's case, in the 80's and 90's autism was rarely spoken so, we never knew much about the disease let alone many treatment options. However, I still wonder if we were to put him on the restricted diet if he would have been different or better yet, been cured from Autism?

A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child.

Statistics show that Autism is the fastest-growing developmental disability in the United States today. This means that without adequate healthcare coverage the parents will have to pay out of the pocket costs for physical, occupational and speech therapy. They may also need psychological, feeding, social and behavioral (ABA) therapy. By paying these out of pocket costs you might have to cut corners somewhere which in turn means if you do have other kids they might be punished by your crucial decision to provide your special needs child with the care they deserve. Many parents are working second jobs or even taking out a second mortgage to make the cut.

But, truly and honestly, I can't say I know what it's like as that parent fighting with insurance companies for coverage or even writing out that check for the behavioral therapy appointment, but, I do know that as siblings we are watching our parents and we respect what you are doing for our brothers/sisters. I love my Mom and Dad more and more after learning what they went through to give my brother the life he has today. It was with early invention and good physicians and providers that my brother has a full and rich life.

What you can do: "Call Your Senators About Health-care Reform and Autism or visit out the below the link for more information:
https://secure2.convio.net/asa/site/Advocacy?alertId=333&pg=makeACall