Posts Tagged ‘Special Needs Child’
The Kind of Friendship Caregivers Need
I can fully, and without a trace of shame, admit that I don’t have many friends. Making friends as an adult is hard. As a mom, it’s even harder. And as an autism mom? Multiply that by a million. I’ve learned something over the years that no one really talks about: being a caregiver makes friendship complicated. It’s not that you don’t want to be a good friend. You do. But most days, you’re just trying to survive. You’re navigating therapies, appointments, meltdowns, medications, school meetings, and the daily emotional…
Read MoreI Am My Autistic Son’s Whole World
My son is autistic. On paper it’s level three severe nonverbal autism. To us he’s just Cooper. He’s 14 years old and while he doesn’t verbally say much…he has more to tell me than anyone I know. He’s always making plans. A trip to Michigan City, Indiana. A ride on the Amtrak. A visit to a train depot in Duluth, Minnesota. A waterpark for his birthday. Today he got my attention and with the push of a button his AAC speech device said… Mom Cooper Trip my best friend. I…
Read MoreThe Words I Still Wait For
I used to spend a lot of time thinking about words. His words. I wondered if they would ever come. I wondered what his voice would sound like. I wondered what he’d say. As the years went by, the possibility seemed to slip away. At first just out of reach. But as time went on, the wish for words seemed almost silly. I told myself we didn’t really need them anyways. I convinced myself, throwing myself into other forms of communication. But late at night, or at a park or…
Read MoreInclusion Matters: Addressing the Silence Around Medically Complex Disability Care
This year, I set a personal goal to be bolder and braver. I want to have the courage to speak the hard truths, share what weighs on my heart, and face the reality that often goes unspoken. So, here we are, ready to dive into a difficult topic that many shy away from. This world wasn’t designed for children like mine. While there has been significant progress for those with “higher functioning” needs, children like mine frequently remain silenced and excluded from important discussions. Even in environments and programs that…
Read MoreAutism: When Showing Up Just Isn’t Possible
Have you ever been treated unfairly or judged because you or your family can’t attend an event because of your child’s special needs? I recently found out that someone in our life is frustrated with us because we can’t attend certain events. Not hugely important events. Nothing major. Just get togethers. I sorta laughed when I first heard the so called gossip about us. That so-in-so was mad at us because we couldn’t attend something they hosted. I almost didn’t believe it. I figured everyone in our life just knew…
Read MoreIf He’s Happy… Then I’m Happy
If you’re happy…then I’m happy. I read that quote today. I saw it on Kate Hudson’s Instagram. When I read it I was actually hiding in the bathroom. It’s been a long couple of days and an even longer couple of months. A new book. Travel. A retreat for 260 amazing mamas. So, I was taking five minutes to myself while my daughter blew into a makeshift horn outside of the door and my son’s iPad blared some PSA about internet safety for kids. He’s been watching it for 10…
Read MoreAutism Was the Word—Love Was the Answer
Autism Awareness Month has come to an end. I, however, am aware of autism every day, every week, every month of the year. It rustles up a lot of opinions, especially this year. Everyone who has autism in their life, and especially those who have a child diagnosed, has the right to their own thoughts, feelings, and beliefs. These thoughts will change over time and certainly change with your child. For some of us, the prognosis is dire. It’s not your child may be a little quirky, or have some…
Read MoreEveryone’s Accepting of Autism—Until They’re Not
Everyone’s accepting of autism until you see my boy on the floor, mid-meltdown, and blame my parenting. The whispers and the stares as you walked past were not unnoticed, but my child needed me more than you needed my reaction. Everyone’s accepting of autism until his stimming doesn’t quite fit in your little box and you feel like he’s too old to behave that way. Everyone’s accepting of autism until you get annoyed that we cannot attend an event because it is not suited for our special needs child. Everyone’s…
Read MoreAutism Is In The News
Autism is in the news right now. And I keep thinking… There has to be an in-between space right now. If you are anything like me, this polar extremism makes me want to hide. And stay silent. I’m scared to comment. I’m scared to share. Like it’s a minefield and I don’t want to misstep. My son Cooper is 14 years old. Eleven years ago, we heard the words… Severe Nonverbal Autism. Boy, it about broke me. And yes, for anyone wondering, we knew it was coming. He had no…
Read MoreA Seat at the Table: Championing Severe Autism in D.C.
It has taken my husband, Michael, and me a couple of days to recover from four plane rides and three days of navigating D.C., but we are so glad we seized the opportunity to do it. Individuals with severe/profound autism and their caregivers/families are so often left out of the conversation and robbed of a seat at the table. We are isolated and forgotten, even though 27% of individuals with ASD are severe/profound. The Authentic Awareness Assembly event, put on by the National Council on Severe Autism (NCSA), gave families…
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