Over the past 13 years, I have met many families from all walks of life. These families have many things in common, but the one thing that connects us in a way that could never be broken is: we all have children with special needs. We are special needs families, our children have been diagnosed with Autism, Down Syndrome, Aspergers, Fragile X Syndrome, or Celiacs Disease just to name a few. When I started our journey into autism on March 31st of 2009, I was completely lost and had no idea where to begin. I knew nothing about Autism. I remember feeling this sense of loneliness, sadness, anger, fear, and so many emotions that I did not know what to do with them. I remember crying for what seemed like days on end. I could not accurately say how long I cried, what I can say is that I was so lost. The pain I felt was unbearable, I wanted someone to tell me it would all be ok, that my son would be ok, that I would once again, feel ok. The day of his diagnosis will forever live in my mind, it is there stored in my memories like it happened yesterday. I cannot begin to describe the immense desperation and fear I felt when I heard the woman from Multnomah County ESD say “Mrs. Lucia, I am afraid your suspicions were right, Alex is displaying signs of autism”. I remember the feeling of hearing those words felt like being kicked in the stomach by a giant, this felt like having the wind knocked out of me. And even though this day was a very sad day for me, I am grateful for those women and the services they provided for me and my son. Multnomah County ESD was our first stop in our search for answers.
I remember I found tons of information at a resource table as I walked aimlessly throughout the Autism Walk. This event that ASO (The Autism Society of Oregon) put together, is an annual walk I learned about weeks before his official autism diagnosis. I remember walking behind a Trimet bus and saw they had information about it attached to the side of the bus. I decided to attend and there I saw so many families, which at the time, I did not know if it was good or bad. The Autism Society of Oregon became a second home to us, they offer so many beautiful inclusive events for families like ours. One of my favorites will forever be Meeting Santa, something I never thought we would be able to do since my son has sensory issues and cannot stand to be in crowded loud spaces. They also hold events for Easter and Halloween and offer a “Take a Break” program for parents and caregivers. This program comes in the form of two movie tickets, and a $25 dollar restaurant voucher and they also pay up to four hours of respite care to someone of your choice, so you and your partner can have a few hours to yourselves.
Another great organization is FACT Oregon, they are an organization that provides resources and support to families experiencing a special need. Amongst many of the services they offer, their advocacy for families is by far one of the most important in my opinion. Many parents and persons living with special needs depending on their abilities, many times cannot advocate for themselves either because they just do not have the capacity or knowledge to, or because they do not speak the language. On the FACT Oregon website you will find information beginning with birth to kindergarten age, IEP meetings, general special education, transition to adulthood services, and others. They also have a support line you can call to ask questions and talk to someone about what you are experiencing. FACT Oregon also holds different types of events throughout the year, our favorite is Tri 4 Youth, a triathlon for kids of all abilities.
Having a child with special needs is a long and many times difficult journey, but it is not a journey one needs to go through alone. There are many organizations in Portland and throughout the state of Oregon that can help guide you in the right direction. Here at 211info we have the organizations mentioned in this article in our database and can provide you with their information along with any other organizations you may need.
If you and your family are looking for resources for children and youth with special health needs, you can contact 211 and ask to speak with our Maternal & Child Health Team.