Posts Tagged ‘special needs parent’
This Is Independence
Two weeks ago, this kid asked me to ride the bus. Sorta out of the blue. He verbalized it…’H-U-SSS.’ (B’s are hard for him.) He showed me busses on YouTube. He showed me busses in books. He pointed them out in the community. And me, being the mom I am, smiled, cheered, and thought…no way. I’m too scared. He’s too vulnerable. I can’t do it. Nope. But his dad, well he reminded me how I preach about independence. Nonstop. I want my son to make his own choices. I want…
Read MoreDo You Ever Wonder?
“Do you ever still wonder what he would be like if he didn’t have Down syndrome?” She asked. It was an honest question from a new friend. She is several years behind me in this journey of parenting a child with Down syndrome. I vividly remember being where she is now. I remember feeling like the odd one out amongst family and friends- I was the 20-something who had a child with a disability. I watched as their children hit the milestones at the appointed time on that now dreaded…
Read MoreHunger
Hello. My name is Carrie. I am married to a man named Joe and we have four boys and one daughter and our second son, Jack, has autism. He is sixteen. Today I’d like to talk about something that can make people uncomfortable. Food. Listen, I love food. Our family loves food. You might say food is our love language. I don’t necessarily love to cook aforementioned food, but listen, everything has its limitations. My son Jack loves to eat. He organizes his day around breakfast, lunch, dinner, snacks, and…
Read MoreDear Caregiver
Dear caregiver, A letter of intent is something that was just recently brought to my attention as something that I need to leave for you. Sure, my husband and I are young, but I’m learning after losing a dear friend at twenty-eight, that life can be short. We need to be prepared. A letter of intent is honestly a term I hadn’t heard of before, but the meaning behind it haunts me every single night. How will you know what he needs if I can’t communicate that for him? Sure,…
Read MoreBeing A Special Needs Parent Isn’t Something to Fear
I overheard two expectant mamas talking in a Chick-fil-A play area. They sat together on one bench, while their 3-4 year old boys played together, and they each were expecting a boy. I watched my own two boys play with these soon to be big brothers. These mamas chatted about pregnancy woes and pediatricians. And then the conversation took an unexpected turn. One of the mamas confessed that she’s constantly having fears that something will go wrong with the baby. It even keeps her up at night. What if her…
Read MoreMissing Out
You’re missing out. Parents of special needs kids say this in their head all the time. At least I do. You’re missing out on having her read all but a few words. You’re missing out on giggly girl sleepovers. You’re missing out on having her on middle school honor roll. You’re missing out on her excitement from passing the driver’s test. Prom. College, moving out. Wedding. Children. So many things to feel bad about missing out on. Milestones and rites of passage that just don’t apply in your situation. But…
Read MoreI am the Parent of a Child with Autism
If you see me about and I look like I’ve had no sleep, know that you are not wrong. The last thing I want to do most days is plaster myself in makeup. I’m clean and I’m showered. My hair is slapped back and that’s enough. I bump into people I know and maybe some who I haven’t spoke to in a while and I know people mean well but I just need to explain something about autism. If you’ve met one person with autism you’ve only met one person…
Read MorePartners in PolicyMaking-Sign Up is Now Open
Hey all! Many of you ask how I jumped into the advocacy world. How did I start? Well, it’s quite simple. As my autistic son got older I started to see all the things that were wrong with the way people with disabilities were and are treated. It didn’t seem right. It didn’t seem fair. So, I started openly talking about things like Medicaid, inclusion, and disability awareness. I want you to know that when my son was diagnosed with autism I remember specifically thinking…I don’t want to carry the…
Read MoreBehaviors, Business, Physical Care and Emotions
I’ve been doing the special needs parenting thing for seven years now. I’ve learned so much about myself, my son, autism, friends, family and life in general. Having a child with a disability changes everything. I’ve learned about exhausting, relentless behaviors. I’ve learned how demanding physical care can be. I’ve completed evaluations, made phone calls, and sent emails. I’ve felt the unique, confusing heartbreak that goes into raising a child with a disability. Some parts are great. I see beauty now that I never knew existed. Some parts are heartbreaking.…
Read MoreWalking Through The Storm Alone
So there is a big story in the news right now about the mom who tried to kill her autistic daughter. You can read the store HERE. I have been thinking about this nonstop and contemplated writing about it. And then not writing about it. This is a touchy subject that I normally wouldn’t touch but here is what I will say… I have never known loneliness like that of a special needs parent. First, I don’t condone what she did in anyway. Let me say that first. But what…
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