We thought the hardest thing we would ever have to deal with was getting a diagnosis for our child. Dealing with the fear, the shame and the grief that came along with it. There was an immediate loss that we felt, the loss of the life we planned for, the life we thought we wanted. Getting any sort of unexpected diagnosis for your child is just the beginning of a long journey that can often feel like it’s you and your child against the world. Our goal in starting Project Little Brother was to support families going through this process. We never want a family to feel alone as we did through our journey. For us, advocacy is one of the most important ways We show love to both of our special needs boys. We now want to share that same love with our community and the world.
Many parents who find themselves needing services due to developmental delays never expected to be in this position. There may not have been any abnormalities found during fetal testing during gestation, no complications at birth and not confirmed familial issues to suspect the presence of a future delay or diagnosis. In many cases, a child who needs early intervention will often develop normally with no delays for the first year, that’s why hearing the word “delay” or the words “Autism Spectrum Disorder” can be so shocking and hard to process. It can also feel impossible that a child struggling with the most basic skill development at age 2 could be indistinguishable from his or her peers by age 5, but with the right intervention that may also be true!
Our goal is to support parent advocacy by sharing our experience and helping parents get the most out of the resources available to them. Navigating the early intervention system (twice) has given us a different perspective and allowed us to find ways to best utilize state, school and community resources so our boys can thrive and reach their full potential. Now we want to help other families do the same!