When you become a mother you realize that you have no limits when it comes to raising your child. You hope that your child lives life to the fullest without any obstacles no matter what your families circumstances are. But no matter where your faith lies the higher power above has a plan for each and everyone one of us and somethings we cannot control in life. All of our children are special but some are unique than others just like Ralph. Ralph was diagnosed with Autism when he was 2 years old and his mother Tiffany Simon began blogging last year to share her son’s story. Autism now affects 1 in 68 children and 1 in 42 boys and is one of the fastest-growing developmental disorders in America according to Autism Speaks. As a blogger and a mother of two with a full-time career, Tiffany still finds the time to share how Raising Ralphie has added immense value to her life. She loves sharing her passions and challenges raising an autistic son and wonderings with her readers. In our interview, Tiffany discusses what inspired her to start her blog, accepting that her son has Autism and so much more about her journey with Ralph. This is definitely an inspiring interview for all parents to read, check it out below:
Modish Mommies: What motivated you to start a blog and share your family’s journey with Autism?
Tiffany Simon: I started thinking about doing a blog last year, I was finally at a place where acceptance had set in and I felt like I had wasted enough time with self-pity. It was time to take action, I wanted to help others who were dealing with the same situation. I am far from a subject matter expert but I knew that what I felt in my heart could be shared with others to help them through the challenges. I started listening to what God was telling me to do. It was a goal I set for myself this year, to let God lead instead of me trying to do it on my own.
MM: How old was Ralph when he was diagnosed with Autism and what signs did you notice?
TS: Ralph was around one in half, two when we knew for sure something was going on with his development. We noticed he didn’t look at you when you talked to him, he was not really talking much and just seemed to be in his own world. There was an incident at his daycare, a bunch of instruments fell and Ralph never reacted. He was the closest to the items that fell. The daycare teacher told us to get his hearing checked and we did. It turns out Ralph had fluid blocking his ears intermittently, meaning some days would be clear and some would sound like he was hearing under water. Once we had his tubes in he was still was not making strides with his communication and then we saw our pediatrician. She recommended we get him evaluated at the Kennedy Krieger Center in Baltimore. By the time we were able to get Ralph evaluated he had turned two years old. It took about three months on the waiting list to get an appointment and the Children’s Hospital is even longer wait. It was then when we received the news that Ralph was on the spectrum.
MM: How did you cope after Ralph was diagnosed with Autism?
TS: I did not handle the news well at all. I felt like my world had a crack in it. I became withdrawn from family and friends. All I did was cry, I was so sad that my son has autism, that he is this beautiful child with this disability. I felt like how could I let this happen, what did I do wrong, why my son… I felt like I was in this fog, always sad, depressed and alone. I felt like this world is hard enough on African American men yet alone to have this challenge I felt so broken. My husband, on the other hand, was constantly researching articles and treatment. I just didn’t want to hear it, any of it. I just felt like we were being punished that our child wasn’t normal. One day I called my mom, I told her how tired I was of feeling helpless like God forgot about me. I will never forget how she told me how much she loved me and how strong I was and that I needed to lean on God to get over these feelings. She said, “Pray, ask God to give you whatever you are missing to get back on track. Because you have little people and a husband who need you.” I could tell she was worried about me. So I waited until everyone was sleep; I began to pray to God, I asked him to remove this feeling of self-pity, for strength, understanding, and acceptance. I asked God to forgive me for not seeing the blessing right in front of my eyes, this special little boy! And I thanked HIM for allowing us to be his parents. I cried for a few hours and finally went to sleep, but this time I slept sound and woke up the next day ready to raise my son. I woke up with a sense of peace, understanding and most of all ready to protect and fight for my son. I would not let negativity and fear rule my thoughts. Each day I feel myself getting stronger.
MM: In what ways can family and friends support someone whose child has special needs?
TS: Sometimes it feels like you are all alone and the best support your friends and family can do is to reach out just to check on you. Being able to talk to family and friends helps so much, especially when they are encouraging you and uplifting you. Friends should keep inviting you to events and outings, a lot of the invitations you may not be able to make it but knowing that they are still thinking of you means so much. You need to have time to yourself, to decompress and just have some “me time” it is very important for your mental health. Also, having family and friends that you can trust and understands your children that can watch your kids when they are sick, or you need a date night or have to go out of town is important. Our parents, siblings, and cousins have really stepped in and have provided us with tremendous support allowing us to do things.
MM: What activities does Ralph enjoy the most?
TS: Right now we have Ralph in swimming, he has such a fascination with water that I felt we had to make sure he knows how to swim. The statics for children who are on the spectrum that dies each year from accidental drowning is so alarming. I read an article on the National Autism Association website, that “In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children on the autism spectrum ages 14 and younger subsequent to wandering/elopement.” Ralph loves to be outdoors running and playing. I eventually want to get him into a team sport like soccer and martial arts to teach him discipline. He also loves his iPad and LeapFrog tablet. Just because he is on the spectrum I don’t want to limit his exposure to try new things I want to make sure he is exposed to as much as possible just like any other typical kid.
MM: When selecting a school for Ralph what factors did you consider?
TS: Our main concern/factor was finding the right learning environment where he can thrive, which means the classroom size had to be very small, the right resources (ex. teacher and support aides), learning techniques and providing a safe environment. Get to know the principal and the staff, be sure to have a presence at the school, and don’t be afraid to ask questions. Being upfront with your expectations for your child’s education goals are key. Get an IEP for your child right away and review it with the team at least twice a year. If you do not see progress be sure to ask the questions like how can they help your child get to where they need to be. It’s all about being part of the solution, not the problem.
MM: Is there anything that has made a difference for your child?
TS: Early intervention has helped us so much. As soon as we had Ralph evaluated at the Kennedy Krieger Institute they recommended speech therapy and occupational therapy. We began speech therapy immediately and this year we have incorporated the occupational therapy. Ralph’s communication has increased immensely. His vocabulary has matured so much over the last two years. We have come a long way with his communication and we still have a long way to go, however, God gives us miracles daily and with this gives us hope for his future.
MM: How should one explain autism to their child?
TS: We have explained autism to our daughter Mackenzie. I told her Ralph is special, he is a little different from other kids, he learns a little differently and he may need your help from time to time to ask for things, to understand how to do things and most of all he needs you to be his best friend. I told her some kids may not understand and not want to be his friend but it is our job to make sure he has friends, to look out for him and to make sure he is included. Mackenzie is 5 years old and she understands her brother is special, he needs her friendship and that he loves her. She always makes sure he is never left out, she is his lawyer, his advocate, and protector.
MM: Are there any beneficial resources or programs that you recommend for other families?
TS: We are always learning from researching autism on the web, talking to other parents, service providers and professionals. The Arc of Prince George’s County is a great resource, “works with its federation of state and local chapters to create an impressive network of human service agencies ensuring they have the strongest civil rights advocates promoting and protecting their needs at all levels.” The Arc has a lot of programs and resources to help families with children with special needs. There is another program called Low-Intensity Support Services Program (LISS), the program provides families with $2,000 each year to provide support services, purchase equipment, extracurricular activities to kids and young adults with special needs. You have to apply each year and the application must be approved. The Autism Speaks is another great resource that has lots of information on advocacy, grants, studies, nationwide programs and so much more.
MM: If there was anything you want someone to know about Autism what would it be?
TS: I want others to know just because your child was diagnosed with autism it is not the end of the world. It doesn’t mean they cannot grow up to do great things and be great! It just means they learn a little differently and it may take a little longer. But as parents, you have to be their biggest advocate, supporter, and teacher and just love them. These kids are special, God chose us to raise these special little people, I wear that as a badge of honor. It is hard work and every day can be a new adventure but take one day at a time. Autism is something they were diagnosed with but it doesn’t define who they are.
MM: What advice would you give a family whose child has been recently diagnosed with a disability?
TS: Start early intervention immediately, get with your county to see what programs are available to get them the help that they need. Never give up, do not let your pride, biases, and others discourage you. Your son or daughter needs you so educate yourself on new research, services and ask questions. Lastly become involved in their education, set your own goals of what you want for your child, and do the work along with the school to get there.
MM: How can our reader connect with you?