To the Occupational Therapist Who Set the Bar High

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We met you before we had a diagnosis. You came to our house and worked with our son on what we thought were just delays and sensitivities. Upon seeing some of your first sessions with him, I questioned your methods and your ability to help him. I remember you sitting outside with him on a sunny day and trying to get him to finger paint. I remember him screaming and nearly hitting his head on the brick patio. I wondered why it was important for him to be able to finger paint. But the more I watched you and listened to you, the more I learned about the skills he was gaining to function in this world.

I remember he was over a year old, and he still would not pick up food to feed himself. Once you finally taught him that, you went on to teach him, at nearly 2 years old, how to bite off pieces of food so his sandwiches would not have to be cut up. You taught him to drink out of more than one color of sippy cup, and eventually we were finally able to give him a different color without a forty minute meltdown.

While working with him, you saw me at my worst. I didn’t know you well and often would open the door with tears streaming down my face from utter exhaustion and frustration. You always encouraged me and lent a listening ear when I needed to vent. You always offered new ideas and different methods we could try to help him overcome some of his most challenging behaviors and delays. You walked into what often looked like a disaster zone of a house and never batted an eye. You occasionally let my oldest son participate in the therapy session too, so I could lay down for 30 minutes after another sleepless night. While we were working through some of our darkest days and longest nights, you showed up every Thursday and gave us progress and hope.

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You were there when we finally got his autism diagnosis and helped me work through the emotions that came with it. We took comfort in the fact that we’d already started interventions and were already seeing a positive response to therapy.

Most important, you cared for him. You were as excited and as proud as me when my son would make strides or reach a new milestone. You taught me how to help him and how to continue to develop skills and make transitions easier, for which I am eternally grateful.

We had to move away from you, but there are reminders of your work every day. When he uses a spoon to eat, he quietly reminds himself “Don’t flip.” Whenever he sees little Chef Boyardee containers of ravioli he says, “Amy gave it.” When he’s stressed or overwhelmed with his environment, he asks me to count on him (using the joint compressions you taught me to calm him down). Whenever he sees a textured therapy ball, he remembers you and excitedly talks all about your blue “spiky ball.”  The little boy who was terrified of baths and hated water touching his head now showers regularly and loves it. The little boy who was perplexed by playground equipment can now climb, jump and swing with the best of them. The little boy who could not go out in public without throwing himself on the store floor or running away, now goes shopping with me all the time and holds my hand as we walk to the car.

We still have challenges, we still have a long road ahead, but because you cared we feel equipped for the journey. Thank you.

This post originally appeared on From the Bowels of Motherhood.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Dear Mom Who Said My Child Doesn’t Care About Anyone

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Dear Mom Who Said My Child Doesn’t Care,

I see how she can come across that way to those who don’t know her. She can seem distant, distracted and aloof. I know she needs to leave play time frequently for a break. I know there are times when she’s trying to control her peers. I know all of these things. I understand they make things hard and not everyone will understand her quirks.

Here is what I also know. She’s one of the most loving, open and accepting children I’ve ever met. She will play with the child sitting alone. She will give the best hugs and kisses. She loves to snuggle and hold hands, and the people in her world are everything to her.

She feels everything deeply and more than most of us. The entire world of sounds, smells, feelings and more are coming at her at full force all the time. The result? Sometimes over-the-top reactions, needing to leave when everyone is still playing, yelling and acting out. I was open and honest with you. I told you where she struggled and how you can help make things easier. I trusted you with her well being at play dates and even attempted a slumber party. Silly me. I should have known that even though you said you understood – you didn’t.

As a momma bear myself, I understand feeling like you needed to protect your child. I understand that watching her have hurt feelings was tough. I’m just wondering in what world you thought fixing things was coming to my house and not only unleashing your verbal spewing on me about all the things wrong but looking at my child and making sure she was clear your were talking about her. Emphasizing each word: “There is something wrong with you,” “You don’t care about anyone,” “You will never get to play with L again.” Congratulations. You just bullied a 6-year-old.

Did you see her face? That child you so clearly think doesn’t care? Because I did. Heartbreak. Fear. Confusion. If you would have been a fly on our wall you would have seen the tears. You would have heard her asking heartbreaking questions and crying that no one ever wants to be her friend. You would have heard her begging to go say sorry, to make it right and that she will never take a break again.

I had to level with my 6-year-old and explain to this innocent, sweet little princess that there are bullies out there and they’re not always children. I had to tell her that even though I know she loves playing with your little girl, things would be different. I had to take a little piece of her innocence and break a little piece of her heart, all because you chose ignorance that day.

I will admit. I am still so angry and hurt for my little girl. Angry that she felt like she needed to apologize for being her. Angry that you pulled her into something that could have been discussed reasonably between the two of us. Just angry.

But I am working on moving on; we are moving forward. We’ve learned a lot from this experience.

I am hoping you have too.

Sincerely,
Mom Across the Way

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This post originally appeared on Utah Easy to Love.

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To the Nurse Who Made This Life-Changing Moment Happen

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When we were in the hospital with our daughter, Reagan, we had the most amazing nurse. I’m going to call her Kate.

Kate had an incredible demeanor. She was calm, always smiling and confident; she was the exact opposite of how we were feeling.

After Reagan’s metabolic crisis, Kate helped us set up a conference meeting with everyone working on Reagan’s case, including the doctor on the floor, another doctor who was basically in charge of the children’s hospital, our genetics doctor, the hospital social worker and the neurologist. The purpose of the meeting was to ask all our questions about our daughter’s new diagnosis (which was complete basal ganglia damage and loss of all her skills up to 13 months, due to a metabolic crisis). We’d also discuss what we were supposed to do in caring for her and what we could expect moving forward. We had three pages of questions. Kate is the one who watched Reagan during that tough meeting.

Kate would take Reagan on walks around the hospital floor and rock her to sleep when we went to the Ronald McDonald House. I’d call Kate first thing in the morning to see how the night went.

One morning, Kate took Reagan to a staff meeting with all the nurses so she could be with people. So when my husband, Rob, and I walked over from the Ronald McDonald House one morning at 6:30 a.m. and couldn’t find Reagan — or any nurses — we walked the floor slightly panicked. I saw Reagan’s stroller peeking out of the cracked conference room door, the same conference room we were in just a few days ago. While we were grieving over a new diagnosis, Kate was helping us with our hope.

I asked Kate if there was any way we could give Reagan a bath — not with hospital bath wipes. A real bath. As I wondered logistically how a bath in a hospital bed would work, Kate burst into action and knew exactly what to do, how to keep Reagan warm, how to keep the bed mainly dry; it was amazing. When Kate wasn’t working, I asked another nurse to bathe her. I ended up taking over; Kate just knew how to do it best.

Kate also got us a bigger (private) room with a private bathroom, closer to the nurses station. When you’ve been living at the hospital for about three weeks, this is a huge deal.

We just loved talking with her. We told her all about our dog, Bauer, at home and how Reagan was probably missing him. She told us we could bring our dog to the hospital — what a game changer. Kate provided us with the necessary hospital paperwork to get Bauer up the elevators past security; our neighbor had taken him to the vet for any shots he needed and also to the groomer. When Reagan laid eyes on Bauer, it was the first time she smiled in more than a week.

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And it was the first time we saw actual life spring from her body since being admitted for her crisis. She cooed, she made sounds, she smiled, she had a little laugh. She was in Heaven. Bauer stayed for several hours, and I truly think he provided a link for Reagan to cling on to. She remembered him, she knew that she had tons of love from us, from our dog; we would do anything for Reagan. Our dog and our daughter have a connection. Bauer makes her laugh, he’s soft, he’s furry, he’s friendly and he’s exactly what everyone needed. Because of Kate, our healing was able to begin. We didn’t know it then, but looking back, it’s obvious to see.

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After we were discharged from the hospital, we connected with Kate on Facebook, and she followed along with our journey. We were mentally exhausted, and she saw a need. She offered to babysit Reagan out of the blue so that we could have a break. Wow! A PICU nurse is willing to babysit? The first time she came we asked, “So how often does this happen?” Her response, “How often do you want this to happen?” Not realizing that what we were really asking was how often does a PICU nurse actually come back to babysit a patient? Not often, we all surmised.

That first date night, Rob and I pulled out of the driveway and just looked at each other and said, “This is crazy!” We were driving away, leaving Reagan with someone we’d only really interacted with at the hospital. But we weren’t leaving Reagan with just anyone… we were leaving her with Kate. The Kate that loved on our daughter, our family and the parade of people who came to visit during our hospital stay. Reagan was with Kate, and Reagan would be more than OK — she would be great.

Kate has watched Reagan many times since, and Reagan just loves her. Kate is more than comfortable administering medication, using Reagan’s G-tube for her feedings, bathing her (in a real bathtub) and putting her to bed. She’s even taught us tricks to help her go to sleep.

Rob and I couldn’t figure out why Kate would want to do this, for us, for Reagan. We came to the conclusion that she’s just one of the most amazing human beings out there. She told me that she felt a connection to Reagan in the hospital, and that when she saw her reaction to Bauer, she knew Reagan would be OK. We are so thankful to have Kate in our lives and will always be forever grateful to her.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

This post originally appeared on rob & anne-marie.

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Why All the Hate in the Autism Community?

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I really, really, really enjoy reading blogs and Facebook pages where autism is the common thread. The people who write or read these blogs/pages usually have someone in their lives affected by autism. I can commiserate with others struggling with similar behaviors and delays or celebrate with them as I read about their child meeting a milestone or goal. It can be immensely reassuring to read about someone else who has a child who shares some of the same issues, quirks or talents as my own. Personally, I believe it makes one feel less alone while stuck deep in the autism trenches. I also love the blogs that use sarcasm, snark and humor to help ease the seriousness of what we’re dealing with.

But I’ve come to realize that some of these same people I feel an instant camaraderie with can become vehemently vicious when someone makes a comment or writes a post that contradicts their opinion for treatments or on how to parent a child with autism. All of a sudden, everyone is an expert.

For instance, vaccination is a hot, explosive topic amongst the autism community. There are some for and some against vaccinating their child(ren) who have autism.  Some believe, without a shadow of doubt, their child has autism because they received a vaccination, while others think the aforementioned parents are crazy. You can hardly admit to liking or hating Jenny McCarthy or Dr. Andrew Wakefield without setting someone off. Other big trends that get people all riled up are whether or not autism can be cured, using the words “high-functioning/low-functioning,” autism schools, communication devices, ABA therapy, special diets (no gluten, no casein, no dyes, etc.), nutritional supplements and alternative therapies. While some parents are taking out second mortgages for some of these treatments, others are thinking those same parents are either nuts, going overboard or even abusing their child.

I get it; we all want what’s best for our kids. Of course, everyone’s perception of what’s best obviously can differ from parent to parent. Whether we want them to gain speech, feel better physically, lower their anxiety level, reduce the spinning and flapping, gain social and life skills or obtain the ability to cope in this chaotic world, I believe we truly just want them to be happy and to reach their fullest potential.

What I don’t get is all the hate, anger and condemnation. Why do some people attack other parents for their choices and beliefs regarding their own child affected by autism? Aren’t we all on the same team? Do we all have to agree and be on the same page? It’s so upsetting and quite sad to see parents bash one other just because so-and-so refuses to vaccinate or so and so does vaccinate. Scientists, doctors and other professionals are all trying to pinpoint autism’s cause and hopefully some day soon, we will have definitive answers, but for now, why can’t we all just focus on advocating for, helping and loving our own child? Sure, share what’s working well and what’s not working. Share whether your child is vaccinated or not, following a special diet, doing alternative treatments, going to ABA schools, homeschooled or maybe how you’re just doing traditional therapy and sending them to the public schools. Write about what seems to work for your child versus what doesn’t because it may help someone else make decisions — especially those new to the game. While our extra unique kiddos on the spectrum often view things in black and white, I don’t think it’s productive nor kind to think that way as parents or caregivers.  There are of course always extremists on both ends, but I have to believe we all share a common bond and should be building each other up instead of ripping someone a new one for their choices or way of thinking.

We want our kids on the spectrum to be accepted by society for who they are and to be treated with respect. How in the world can that ever happen if we ourselves are unable to give each other respect? We need to quit working against one another and be more supportive and understanding as a whole without getting caught up on individual choices. Do what you feel is right for your child and your child alone, and please try to keep the peace in our ever-growing autism community. I think we have enough hardships, stress and angst on our plate as it is, don’t you?

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This post originally appeared on Our Version of Normal.

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Why I Don’t Mind Having One Less Band-Aid

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Last Friday afternoon, shortly before my son, Dominic, was due to come home on the bus, I popped into my local Kroger to pick up a handful of items for the weekend. As I was putting the last of my things onto the conveyor belt, I overheard the gentleman who was bagging my groceries say to the clerk next to him, “Can you get me a Band-Aid?”

She answered back, “OK, I’ll get you one in a minute.”

He started to get upset that he didn’t have one. Since I was running late, I guess I could have just finished bagging my own groceries and gotten out of there, but that’s not my style. I always have at least one Band-Aid on hand at all times, so I pulled one out of my purse and said, “Do you want this one?”

He seemed relieved and said, “Yes, could you put it on my finger?”

love the fact that my local Kroger has hired a handful of individuals with special needs. As I finished putting the Band-Aid on his finger, he told the clerk, “We should buy her a candy bar!” I told him, “No, that’s OK.” The clerk was telling me that the bagger has to ride a bus to get to work by himself.

domandmom1 As I walked to the car and loaded in my groceries, I had a flash-forward moment to about eight years from now, when Dominic will be 18, an adult. It’s so hard to predict the future for him. There was a time when I didn’t think Dominic would ever be potty trained. But yesterday, I was ready to have a party because he said, “I have to go potty!” I’ve been having to prompt him to go every two hours, so him telling me he had to go was a huge step for him. I feel like every day we take a few more steps towards him being more independent. I think about his future more and more as he gets older.

Will he go to college? Get his driver’s license? Have a job? Live on his own? One thing I’ve learned as get older is you can’t assume anything in life. I’m sure my bagging buddy has a mom out there. I know I will never probably meet her, but I hope she knows what a sweet and awesome son she has and how proud she should be of him. Who knows, maybe one day she’ll be shopping at that Kroger and Dominic will be bagging her groceries and he’ll need a Band-Aid.

This post originally appeared on bountifulplate.

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Dear United Airlines Employee Who Saw an Overwhelmed Mom and Actually Did Something

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Dear United Airlines employee at Yeager Airport in West Virginia,

I was waiting at the airport desk with a preschooler, carrying a backpack, a baby in a stroller, two large suitcases, a handbag and a carry-on when I found out my flight to Washington Dulles in Virginia had been delayed. I saw you look at me with all my baggage and two girls and smile apologetically. I admire the way you kept calm as I freaked out because I was worried I’d miss my international flight from Dulles to Frankfurt.

When I told you my baby had an appointment for a muscle biopsy in Germany, you did everything you could to find me a flight from any nearby state to get me there in time. I haven’t forgotten that.

I watched you as you called different airlines and different airports with a genuine look of concern on your face, trying desperately to find me a flight. Although you couldn’t find me one, I want to say thank you for doing everything in your power.

Thank you for being genuinely concerned.

Thank you for checking me in a day in advance to make my life easier.

Thank you for giving your colleague that look when she told me I had two extra pounds in my suitcase.

Thank you for the Dulles meal vouchers.

After your job was done you told me, “I will ask my mother to pray for you, she has an open connection with The Lord.” Thank you for that.

Thank you for giving a sweaty, flushed and scared mom a much needed hug.

Thank you for making my day and reinforcing my faith in humanity, but most of all thank you for being you.

You have no idea how much you helped me.

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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