Posts for special needs

25 Things I Learned as a Special Needs Mom

Forever Family, Go Girl! - Allison Kenny - April 12, 2017

  1. Every milestone is worth celebrating. It doesn’t matter how small.
  2. Perfect is not real.
  3. Sometimes, my self-care is THE most important thing.
  4. Take the long view. Big picture is everything.
  5. This, too, shall pass. It always does.
  6. Humor goes a long way.
  7. Be responsible for the energy I bring into a room.
  8. Be gentle.
  9. Notice what my face is doing.
  10. I get to be human. I get to be human. I get to be human.
  11. Forgive myself.
  12. Forgive my kid.
  13. Other kids and families might do things differently not better, not “normal” just different.
  14. Advocate for my kid with persistence, patience, and love.
  15. Saying no is really important.
  16. Saying yes is really important.
  17. Get on the floor and play.
  18. I’m not in control of, well…barely anything.
  19. People act out when they are afraid.
  20. I act out when I am afraid.
  21. People stare. Smile back.
  22. I am a superhero.
  23. My kid is working as hard as I am.
  24. Hold onto joy every time it shows up.
  25. Get help.
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How I Told My Daughter That She Has Special Needs

Forever Family, Go Girl! - Allison Kenny - January 25, 2017

We are sitting at the dining room table for yet another teary session of math homework. She has used up all her focusing tools- chewing gum, lighting a peppermint candle, choosing which problem to start with…nothing is helping. Then I see the light in her eyes change. They grow dark and serious in that intense way I know so well. She is fighting for truth.

“Mom, why can the kids around me do math but I can’t? I learn it but I can’t remember it. The other kids remember. Why, mom? It doesn’t make any sense.” There is shame in these words. And desperation.

I’m not planning to have this conversation today. I didn’t wake up knowing that I would be called on to deliver this news in a way she can digest it. My wife and I are still digesting it ourselves.

We go through periods of intense grief and even anger about her special needs. Spending time with other people’s kids can trigger it. After a morning babysitting my dear friend’s toddler, I spend the afternoon sobbing. This three-year-old has social skills that are more advanced than my eight-year-old. We travel to Texas to visit cousins and breathe through frustration as my daughter’s anxiety and hypervigilance exhaust everyone in the house. We go to IEP meeting after meeting and are overwhelmed by how many professionals are engaged each week in supporting my kiddo’s learning. After weeks of her violent PTSD fits, we refocus on caring for ourselves so that my daughter’s needs don’t take over our entire lives.

More like this: Even though My Wife & I Get Away, Our Daughter Makes Us Pay

But here she is, asking for the truth. So, I share with her what gets me through my moments of fear and grief and doubt and anger. I share with her the truth about her resilience.

“I’m telling you the truth. Are you listening? Do you remember how you were born very tiny and that you came out early? One thing that happens when babies are born early is that their brains don’t get enough time to develop. This is not the baby’s fault! This is nobody’s fault. It happens to many babies who are born early. It means your brain has worked extra hard to develop and grow ever since you were born. And guess what? Your brain is doing very well. Very very well. That’s because you have a powerful quality in you. You are FIERCE. That means you are somebody who doesn’t give up. Even as a teeny little baby, you were so fierce that you fought to live. You fought to grow. And now, you are fighting to learn math. It is harder for you. You are right about that. But working hard and not giving up are wonderful qualities to have. You also have mama’s who love you and teachers to help when things feel hard. You are not alone.”

I hadn’t researched what to say. I hadn’t prepared for this question. I just opened my heart up and felt around for what she needed to hear. Of course what really happened is that I said the words I needed to hear.

I think healing the dissonance between our fantasy of parenting and the truth of it will be a long road for my wife and I. But moments to ignite our empathy and focus on our daughter’s amazing gifts help. They help a lot.

More Like This: Dear Kids At School

I’m different and that’s awesome

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I can’t take my kid with special needs to the Women’s March. Here’s what I Can Do…

Go Girl! - Allison Kenny - January 20, 2017

A month ago, my best friend called me and we sobbed. We both felt despair that the man running for President of our country admitted to groping women without their consent.

Today, he moved into the White House and 600 groups of women all over the world are marching in protest. My friend and I were determined to take action in some way. But marching with our young daughters (mine with special needs), felt like more than we could take on. My daughter is highly sensitive to crowds, to yelling, to cold, to other people’s emotions. Participating in the Women’s March would likely trigger a trauma response and days of violent fits. But this is a moment in history we don’t want to miss. I want to look back on this time and know for sure that I was intentional and conscious. I want to model a balance between self-care and activism for my little girl.

My friend and I knew that if we got our families together, we could come up with something meaningful to do even if we had to stay home. So, my BFF packed up her little girl and is making her trek to my house in Oakland right this minute. I think we came up with a pretty great plan for our Go Girls!

Read more about it on the Spotlight: Girls blog….

 

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Dear Kids at School

Forever Family, Go Girl! - Allison Kenny - August 30, 2016

Dear Kids at School,

I know that when you see my little girl, you notice all the ways she is different from you. You see her glasses and her funny walk. You notice that she talks fast and loud, that she grabs the stuff from your hands without asking, how she sometimes tells everybody what to do. You see that it doesn’t take much to make her cry or make her mad or make her break the rules.  You notice that she is different than you. A different race. Has a different kind of family. Gets pulled from class for special ed. Why is she so weird…right? That’s what you want to know. Why is she so different?

Well, these aren’t the only things that make her unique. If you look closely, she has other qualities that might be harder to see. When you say hi, she’ll never ever ignore you. She’ll never leave you outside her house and say you can’t come in to play. She’d never ever want you to feel forgotten. In fact, my girl goes out of her way to make everyone feel special all the time. It’s her superpower. At home, she likes to put the toothpaste on the toothbrush for me and leave it out. A little surprise for me to find at bedtime. She leaves me notes and treasures and drawings of hearts that I find all over the house.  When our dogs were scared of the doggy door, she invented a contraption to hold it open for them. The first time she rode a horse, she petted it and kissed it and thanked it for the ride. You see, my girl’s heart is bigger than the heart of most people. That’s what actually makes her different. She’s sweeter than most. We could all learn something from her.

Another superpower she has is courage. She’s braver than most. Did you know the school you all go to is her 5th school in 4 years? She had to be brave and start over with new classrooms, new teachers and new kids every time. She did the same thing with families. Can you imagine walking into the house of brand new parents when you were 6 years old? Seeing your new room for the first time and wondering what this life would be like? Learning to trust brand new mommies and let them take care of you? That’s what my girl did. She had the courage to start a whole new life in a brand new town.  She had to say good-bye to everyone and everything she knew before. These are big good-byes. She had to have the courage to feel all those sad feelings and let her heart break so it could start to heal.

I can’t end this letter without talking about how hard my daughter works. You know that math packet you just got for 2nd grade homework? The same page of problems that takes you 15 minutes, takes her an hour. Oh no…it’s not because she is dumb. It’s because she was born 4 months early. Totally not her fault! But when kids are born early, their brains don’t get enough time to grow so they learn differently. Can you believe she never gives up? She doesn’t get to. She just has to work harder and harder- yes, harder than you so that she can learn the same things. She also works hard at making friends. She didn’t get to see people being good to each other when she was little, so she didn’t learn about things like sharing or taking turns like you did. She works very hard at this. She has a coach who comes every week and helps her learn to play well. She’s getting better and better at it. She has to work harder than most kids to do things like chew her food, tie her shoes, or even understand directions the teacher gives her. Pretty much all day, she’s working super hard to do things that most of you can do with no problem.

Wouldn’t it be great if you could cheer her on? What would it be like if she knew you were rooting for her instead of teasing her or leaving her out? What if you could see her sweetness, her courage, how hard she works?  What if you could help her along instead of push her down? I bet you’d feel good about yourself then. You could be so proud to know you were a good friend and accepted someone who is different than you. It would mean the world to her and  you…well, you would get a lot out of it, too. When we open our hearts and act kindly, we get to be happy. We get to be connected. We get to have more fun. How does that sound? You with me?

I can’t wait to see what you decide to do.

All the best,

Allison
Go Girls! Co-Founder
Kidpower Instructor
Mama

P.S. Speaking of having more fun,  join me in Berkeley on Sept 25th and see me perform live on stage. I’ll be celebrating magic and power we all have to be ourselves. Go Girls!  New to my blog? Follow me on Facebook, Instagram, or Twitter.

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An Adoptive Parents’ Guide to Finding Dory

Go Girl! - Allison Kenny - July 5, 2016


Finding Dory was aDORable, am I right? Who doesn’t love Ellen and remember Finding Nemo like it was yesterday? Nothing better than packing up your family, getting your popcorn buttered and settling in for a sweet afternoon at the movies. Unless you are an adoptive parent. If you adopted your child, you do your research before going to any movie. You know that for some reason, every other kids movie out there includes protagonists who are orphans, in foster care, have dead parents, mean parents, tragic separation from siblings they love or in the case of Finding Dory, spend the entire movie in a desperate search for their birth parents. Sigh.

I get it. The worst nightmare in the psyche of any child is to be deeply alone in the world and abandoned by their parents. I’m not a therapist, but I imagine that for kids who are securely attached, seeing their worst fears play out on the big screen feels good because it externalizes the nightmares and ties them up with a happy ending. Then, the typical kids get to hug the parents who birthed them and feel safe, secure and aware of how loved they are.

But what if the nightmare of losing your family, being abandoned or mistreated actually happened to you? Seeing it played out would not feel good. It would be scary, retraumatizing or humiliating. They would be anxious on the way to any movie and have trouble sleeping after, even though they begged to go see it.

As a parent, I have to weigh the pros and cons before seeing any flick. I heard that Finding Dory could kick up lots of grief but that it wasn’t too scary. I also knew that all my daughter’s friends at camp were seeing it and talking about it. Having things to connect with peers about is a definite pro when it comes to my quirky girl. Plus, her big cousin was in town from Texas and wanted to go. We didn’t want to deny them the sweet memory of seeing this movie together. So…we went.

We ate a big dinner before and didn’t get candy. Instead, we brought tiny treasures wrapped in tissue paper. When our daughter got anxious during the movie, she turned her eyes to her lap where she could unwrap a little something to focus on instead. While Dori was having flashbacks about the major loss in her childhood, my daughter opened and found a tiny shell. While Dori was longing for her Mommy & Daddy, my little girl found a tiny square of clay to squish into shapes. When she got bored with a treasure, she’d put it in Mama Lynn’s purse and watch the movie awhile. Then, she opened another. Bringing sensory tools to the movies was not something we’d tried before. After Inside Out, we spent 20 extra minutes in the theater holding her while she sobbed. The Good Dinosaur sent her into so many tears, I had to bring her home and rock her like a baby until she calmed down.

But I’m glad we tried Finding Dory before giving up on going to movies all together. With tools to manage her triggers, our daughter got to see a girl lead character take center stage in her own life. Dory and lots of the animals in this film have a vulnerability that makes them different. Dory’s “short term memory loss” and distractibility were a wonderful mirror of my daughter’s special needs. Dory is loveable and adored. Just like my little girl. Dory is a leader. She has courage. She overcomes her biggest challenges. I want my daughter to get to see examples like these of girls in media.

After the movie, my daughter’s review was “ I liked it Mommy. But some parts were sad.” OMG she used a feeling word! Success.

Go see Dory. Pack treasures and tissues. Let me know how it goes.

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