A Parent's Perspective - JJ's Journey

Lori and Jeremy being interviewed on NBC. Scroll to the bottom for the full interview.

Today I am pleased to share Lori Ciccarelli's perspective with you. Lori is mother to Jeremy Brooks, a 23 year old young man with Autism Spectrum Disorder, who will be graduating college this year with a bachelor’s degree in Graphic Design with a concentration in Illustration and a minor in Writing.

Jeremy was inducted into an international honor society for college students with special needs.

Lori is a regular contributor to Special-Ism, a website dedicated to addressing the varied challenges within the "invisible" special needs community. Lori also created a documentary, JJ's Journey: A Journey About Autism, to share the struggles she and Jeremy have faced, as well as how they overcame many challenges. Lori is currently earning a master’s degree in Leadership and a certification in Spiritual Leadership. She would like to pursue a doctorate in Hospital Chaplaincy. Lori holds an appointed seat on the Board of Directors for the California State Council on Developmental Disabilities.

Our life in four words:

Determined. Thrive. Hopeful. Advocacy.

Four qualities I look for in a therapist:

1. Compassion: The number one quality I look for in therapists is that they can put themselves in my son’s shoes and try to understand his perspective.
2. Creative: It’s important that therapists go outside the box setting up their clients for success which may include non-traditional learning techniques as not everyone learns traditionally.
3. Experience: Because my son was diagnosed with autism a couple of decades ago, there was not much information or experienced professionals in this field. We have been the pioneers for so many situations. It’s wonderful when we can connect with therapists that already have experience with Social Cognitive Deficit Disorders.
4. Passion / drive: When a therapist is burned out or doesn’t want to work with special needs children, it is obvious and it leaks all over the place. Our kids must sense that the professionals working with them really do care and want what is best for them to thrive.

Three resources I can’t live without:

• Michelle Garcia Winner’s Social Behavior Map – a tool to help my son take the perspective of others. Typically those on the spectrum are challenged with going outside of themselves to understand the perspective of others. This tool makes it more concrete and not only helped my son connect with others, but also helped with reading comprehension placing him in the character’s shoes. I have derived Winner’s tool to use in leadership workshops when I teach on elevating Emotional Intelligence as it is all about social competence.
• The Incredible 5-point Scale by Buron and Curtis. This tool is like magic!! For those on the spectrum with low impulse control, to self regulate can be a challenge. This tool helped to make self regulating very concrete with a plan in place to help when emotions start to flare up. I also use this tool when teaching leaders on how to enhance Emotional Intelligence.
• God: I am a very spiritual person. There are so many challenges that come with raising a child with special needs. God gives me strengthen. Over the years, I prayed for patience, perseverance, compassion, and unconditional love. God wasn’t going to just hand over those qualities instead He provided opportunities for me to grow by blessing me with a special needs’ child. I am not the same person I was 25 years ago.

Jeremy participating in therapeutic horseback riding.

A few words of advice for parents raising a child on the autism spectrum:

• Remember, you are your child’s best advocate. You need to stay involved with the educational team. Remember, you have rights and so does your child. Your child has the right to a Free Appropriate Public Education (FAPE). Make sure the school is meeting the goals and objectives on the IEP. I had to call the State’s Department of Education, Special Ed a couple of times due to frustration and they reminded me that my IEP was a legal document should I need to take action.
• Be resourceful. It is unfortunate that the school districts will not inform you of all the resources available to your child because of budgets. Connect with parents that have gone this route for resources available.

Two words of advice for parents of a child newly diagnosed with an autism spectrum disorder:

Persevere. Don’t give up. There is hope. I was in denial for many years. Once I accepted my son’s diagnosis, doors started opening because I started opening those doors. When I finally realized my son didn’t need a cure and focused on tools for success, he then started to soar!! I was the obstacle in the way because I spent time looking for a cure. We are proud of who he is and how far he has come.

Jeremy, age 4.

One dream for my child:

Happiness and acceptance. The hardest part of this journey has been the bullying and the intolerance of others. I would like for my son to find his “peeps.” Everyone wants to belong and fit. I pray that he stays strong and proud of his uniqueness while finding a network of true sincere friends.

Jeremy didn't enjoy Disneyland until he was 17 years old because of experiencing sensory overload.

What I do to rest and recharge:

I love to be outside in nature walking, hiking, meditating and praying. Letting the cares of the world go!

Lori, thank you so much for stopping by and sharing your journey today! Readers, please be sure to visit Lori's website at www.autismjourney.net and to follow her posts on the Special-Ism blog. You can also follow Lori on Facebook and Twitter. Don't forget to check out this article featuring Jeremy at college.

Jeremy and Lori's television interview: