Between constant Individualized Education Program (IEP) meetings, doctors with specialties you never knew existed, collecting your own data, advocating, and dealing with insurance… being a mom to a child with special needs is a full-time job (or a few full-time jobs put together). Packed with stress, success, steps forward, steps backward, heartbreak, and joy.
As a stay-at-home mom, I spend my days caring for our sons, especially our son Ethan who has autism. From the time Ethan was 2 years old, he began receiving 20 hours of therapy every week. I knew it was important for me to learn everything I could to help my son.
Those early years were lonely for me. Most of my friends had children that were typical and could simply go hang out at the park together. If, by some sheer miracle, I could manage all the therapy hours and make my way there with Ethan I couldn’t just sit and chat, I had to actively follow him around the playground because he was very impulsive and might do things that were unsafe. It wasn’t until he started preschool that I met other moms who shared similar experiences. It was with these moms that I first realized all I could and should do is to help him and try to positively influence how others look at people like my son. It was through them, that I learned to love my son for exactly who God made him to be.
One of the most difficult things as the mother of a child with special needs is seeing others reject my son. I’ve experienced my son being removed from his general education class simply because he is on the spectrum and might make too much noise. We have been the cause of stares and whispers in public places.
But, there have also been times and places when others have treated my son as an equal member of the group, and this makes my heart swell! For us, church has been one of those places. All team members in our Sunday school class work together to include ALL the children in the room, no matter what their unique abilities are.
My son is a child of God, created in His image. He has purpose. Being Ethan’s mother is not a burden to me. Please don’t make assumptions that I need to be relieved of my child and that I’m not deeply interested in him knowing the Lord. Being a parent of a child with special needs has its challenges, but I have hopes for my son like any parent has for their child. I want Ethan to develop a relationship with God. I want him to be part of a church community.
I am so grateful we found a church that welcomes every member of our family. The support we receive from them helps to make this crazy journey as the mom of a special needs child more sustainable. Wouldn’t it be awesome if the Church was known as the place that welcomed, accepted, loved, and wanted individuals like my son in a more authentic way than any other place?
As we prepare to celebrate Mother’s Day, what can you do to come alongside moms whose children are affected by disability? If you are a mother to a child with special needs, what can the church do to support you?
Marisa Altamirano is a passionate advocate for children who are uniquely abled. She serves as the director of the special needs ministry at VantagePoint Church. Marisa is a wife and mom to three wonderful boys, one of whom has autism.