A collective letter from Special Needs Mamas

This letter is for all of us and from all of us. A collective of our experiences and what we long for others to know. We are special needs parents who choose to show up, no matter what.

We often have no idea what we are doing.
We feel isolated because it is hard to relate to others.
We don’t have the energy to explain ourselves
or our children.
We long for the world to accept our children where they are, but believe in their capabilites beyond their labels.

Click below for the PODCAST VERSION

All of our journeys look different, but the heart behind them is the same. We dearly love a child who cannot always communicate their love in return. A child that has to work harder than most other children. A child that flipped our entire world upside down, and changed us for the better.

Meet Easton (3 1/2) who has a rare genetic condition, hypotonia, global developmental delays, and parents that are his biggest cheerleaders!
@eastonsjourney

What we need you to know…

We love our child(ren) FIERCELY. We can both mourn the life we thought we would have while fully embracing the life we now live. We can acknowledge how unfair things are for our family, without loving our child any less.

We are more than parents. We have to take on the hat of advocate, researcher, therapist, cheerleader, insurance expert, and so much more. It can often feel all consuming and it impacts every aspect of our lives.

Please do not stare or teach your children to ignore. We would much rather people ask questions or just say “Hi!”

Meet Owen (2) and his amazing family. Owen is currently waiting surgery for a G tube and undergoing testing for a clear diagnosis.
@charliparker5

We are juggling SO much. We often cannot answer our phones right away, or keep up with relationships like we used to. It does not mean we do not care about you, it just means we are tired and overwhelmed.

On the other hand, please don’t stop inviting us to things! When we can make something work, it means so much.

We face all the regular exhausting parts of parenting, without the conventional moments that recharge us. We miss things like excited greetings when we walk through the door. Hugs and kisses are monumental, not normal occurrences.

Meet Vin (5 1/2) and his adorable siblings Soren (4) and Mercer (6 weeks). Vin has mild CP from birth trauma.
@telli.331

We would trade the “MOM MOM MOM” interruptions you may find annoying for our silence or non-specific screaming in a heartbeat.

As special needs parents, we have to learn to speak love in the way our child communicates..which often feels foreign to us.

We get accussed of being helicopters, but we are not. We are guardians. When your child cannot voice their pain, or report when someone hurts them, you can never stop being a shield.

We know the difference between regular tantrums and sensory overload. Please don’t accuse us of spoiling our children. We are doing the best we can, and unwelcomed comments only drain us further.

We crave date nights just like any other parents, but very few babysitters are equipped to handle our beautiful chaos.

Anyone that takes the time to love our child the way they preferred to be loved wins our heart, too. On the flip side, anyone that snickers and points or judges our child is an instant OUT.

Our children are capable of doing great things. Please see our child first, not their label.

Mackenzie (15.5 months) diagnosed with extreme prematurity, chronic lung disease, hydrocephalus, and Beckwith-Wiedemann Syndrome. You can follow her amazing journey @brooke_ufgirl

Why it matters…

Raising a child with any level of special needs is HARD. Before becoming a Mom, I worked closely with special needs families. There was so much added heartbreak in their lives due to misinformation in the general public.

Things that may appear helpful, are actually quite devastating. That parent at the grocery store with a tantruming child doesn’t need extra glares. That Mom does not need to log on to their social media only to hear that “X for SURE is what causes autism.” That Dad doesn’t need to hear how his child is “too much” for family gatherings so just get him to “behave.”

What we say MATTERS. What we don’t say also matters. So say “Hi,” or ask questions with sincerity. We need YOU to set the example and change the conversation.

For more resources, please check out our page Sensory Silliness.

Our Family’s Story can be found here:
Dealing with a Diagnosis