Posts Tagged ‘help’

My son, I used to be so scared of different. Of standing out. I preferred to blend in. Not rock the boat as they say. But you kid. You changed all that. You were born to stand out. To be different. When you were little I’d get so scared. The fear would almost paralyze me. In a way you were fearless because you didn’t care what people thought. And I’ll admit, that frightened me. We’d be in a waiting room or at a park. Everyone else would be sitting. Or…

A while back we visited an arcade. It was a big adventure for our family of six. Our second son loves all things gaming. And our 3 and 6 year olds love tagging after their older brother. And Cooper, our eldest son, he is just starting to take in the world outside of our home. He loves exploring and experiencing the world on his own terms. He is fourteen years old. He loves trains and postcards with animals on them. He also has autism. He is autistic. And according to…

My son Cooper has always reached for a hand to hold when we are in the community. But not just any hand. Typically only mom or dad. He likes the comfort of us walking alongside him. Usually we lead. Or we walk side-by-side. And as he’s gotten older, he’s even started to lead more. But he’s always only an arms length away. We are his safe spot. His translator. His buffer. His armor. We help him decipher. We explain. We protect. We walk. We often refer to him as a…

This morning I was running around getting four kids ready to leave the house, even earlier than usual. We had a sensory friendly showing of Moana 2 to attend. Cooper was the most excited. He’s been counting down the days for weeks. See his two best friends we’re going too. Up and dressed and ready to go and saying…’DDD-EEE-X-TER’ every time I walked by. It was a bit chaotic to say the least. Packing a bag, a special snack and drink for Cooper, headphones, hats, coats, and gloves (it’s 4…

Hope. Gosh I hear that word a lot. Have hope. Never give up hope. All we can do is hope. If we give up hope, than what do we have left. In the world of autism, hope is a hot topic. Because for some reason, people question if I’m hoping for the right things. Hope and I have had a rocky relationship over the last few years. For years I hoped nothing was wrong with my baby. Then I hoped my toddler would catch up. And then I hoped that…

Progress over Perfection.That’s a phrase I think about a lot. In the most challenging years of our son’s life, post autism diagnosis, it felt like we were frozen in time.Or moving backwards even. But never forward.Our son was in pain, but we didn’t know why or what. He didn’t sleep or communicate. He hurt himself and us. He rarely smiled.For years it seemed like he wasn’t made for this big, confusing world. And to top it off, the world didn’t seem to want him either.But we didn’t give up on…

To my son’s future caregiver… My son is 14 years old. When he was three he was diagnosed with severe nonverbal autism. We had no idea what the future held. And honestly, we weren’t told much good. When he was 8, I made the decision to walk away from the negativity. The sad predictions. And the people who didn’t believe in him. Or see his strengths. It was the best decision I’ve ever made. His favorite thing to do is to decorate for Christmas. He will help for a bit.…

What keeps you up at night? That was the question asked during a presentation I was giving to the amazing folks who work with children and adults like my son. I fumbled a bit through my answer because I don’t like to speak of those things. I said keeping my son safe from the dangers of the world. As he gets older, bigger and bolder, I find it more worrisome. And who will care for him after I’m gone. Or if something happened to me and my husband now. I…

Our elf on the shelf experience encapsulates a lot about my son Jesse’s journey with autism. When her was around four, my sister bought Jesse a boy Elf on the Shelf. She’d gotten one for my nephew and wanted to spread the magic to our family too. I wasn’t a big fan. I’ve always been of the snitches get stitches mindset when it comes to these little overpriced spies. But it was a thoughtful gesture, so I went along with it. It’s funny how the typical things you never even…

My message to establishments that have family restrooms. THANK YOU. Before I had a child with a disability, I was oblivious to a lot of things. I foolishly assumed that all kids went to restaurants, and used public restrooms and even transitioned from riding in a cart to walking. I didn’t know that some children are deathly afraid of automatic flushing toilets and hand dryers. I didn’t know that some parents are unable to go into gas stations or even go through drive thrus. But the biggest thing that I…