To the Mom Whose Son With Autism Is Just Starting Kindergarten

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My husband Sean left yesterday for a business trip.

Basically, in the next month, he will only be home for about five days.

He used to travel like this all the time — he worked in a different state and was gone Monday through Friday. The only difference was that our boys were much younger — this was 10 years ago. And our oldest, TJ, diagnosed with autism at age 2, had just started kindergarten.

His traveling got me thinking how different things are now from that stressful time so long ago. It was hard to hold it together day-to-day back then. And I thought, “What would I tell that Lauren 10 years ago, if I could, to help her get through such a tough time?”

So I thought I would write a letter to 10-years-ago me:

Dear Lauren,

I know how you’re feeling! It’s so hard to send TJ off to kindergarten after three years of all his autism services being at home. It’s hard to let go of that control and not know what he is doing, and how he is doing, throughout his day. And it’s really hard to do this all alone while Sean is working, and with our other son Peter still at home.

But let me tell you something: Everything is going to be OK.

Here’s advice from someone who knows 1. what you find to be the most difficult about all of this, and 2. what will happen in the next 10 years that you can’t see right now while you are so busy….

Breathe. Letting go of TJ is hard, but you are handing him over to the most capable, loving people at school, who will do everything they can to help him learn and grow. And here’s a little secret…. these amazing people will stay in your lives long after you leave this school, and they will love hearing about how TJ is doing, and how he is growing into a capable, flexible, independent young man. He is in good hands. Take the time at home with Peter, and give him the focus you couldn’t give him when you were so busy with all of TJ’s services. This is his time with you, and it will go so, so quickly. You two are about to make some wonderful memories together.

Brace yourself. Now that TJ is in school, a whole slew of new issues will come up that you and your school team will have to handle. But handle it you all will. Try to remember that every new issue that arises is a new opportunity for TJ to grow and learn.  Change is difficult. Struggle means progress. And these big issues now, like TJ learning how to handle the noise of an assembly or the lunchroom, are temporary. I promise. The work you all do now will pay off later. And you will be amazed what this kid of yours can handle.

You are not Superwoman, and you’re not fooling anybody. This is a really hard time. There is extra pressure on you to be everything for everyone with Sean on the road. It’s OK to ask for help, and it’s OK to not always be OK. It takes a strong person to admit she needs help.  You have three wonderful personal care assistants (PCA), hired by me and paid for by the state through a grant — use them. They are wonderful ladies — they love your boys and they love you. They see your struggle. They can help. They are there for you to take time for yourself, so you can be the best mom you can be. You will lean on them, you will rely on them and you will love them, as they will become family. Like TJ’s teachers, they will remain in your life, even as they leave to start new lives of their own.

These relationships you are making today will last a lifetime. It will be hard to say goodbye to them, but more wonderful PCAs are waiting for you to open that door to them. You won’t always have these wonderful people, so enjoy the time they give you, the help they give you and the love they give to you and your boys. Learning to take care of yourself now will help you farther down the road.

Take a lot of video of these growing boys! I know you are overwhelmed a lot of the time, and with Sean gone so much, time seems to drag. Trust me, it will soon fly by and you will soon look back in amazement at how much time has passed. These boys won’t be little forever, and you will miss those little voices. Before you know it, they will be teenagers with huge feet, deep voices, and they will be taller than you! I know it feels far away, but it isn’t. Cherish these little guys while they are little. Play. Laugh. Sing those annoying little songs. They will be happy for those childhood memories you give them. And you will be amazed at how much and how fast TJ will progress — you will need that video footage to remind you of how far you all have come! I know you can’t see it now, but trust me, it will happen.

And finally, 10-years-ago-Lauren, don’t forget to take chances. Push TJ to do things you don’t think he can do. He may struggle at first, and you may doubt yourself, too, but in time, he will be capable of things you never thought he could do. He will be able to walk home from school all by himself one day. I know! It’s hard to believe, right? Seems impossible? It isn’t. And all the work you all are doing now will make things like this possible. Oh, and those kids in his class? They like TJ now, but they will love him when he is older. Yes, social things with other kids will remain something he has trouble with. But it’s made easier by these kids who will remember being in kindergarten with him and learning with him. They will take him under their wing and give him a confidence that will serve him so well. He knows they enjoy him, and he enjoys them too, in his own way. He will even make new friends in middle school! You know, that really scary time you are terrified of? These amazing kids will make it so much easier on him. Trust me.

It’s a lot of work, 10-years-ago-Lauren, but please know it is worth it. You all will get through this difficult time, I promise.

With love and all the energy I can muster for you,

Older (and wiser, let’s face it) Lauren

mom, dad, and two boys outside
Lauren, her husband Sean and their two sons TJ and Peter

Follow this journey on Laughing… Like It’s My Job.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Futuristic Robot Ball May Be the Next Big Toy for Kids With Developmental Disabilities

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Meet Leka, a motion-sensitive ball designed specifically for kids with with developmental disabilities.

Leka lights up, vibrates, moves and makes noises to stimulate senses, all of which are designed to help with social, motor and intellectual skills, according to the company’s website.

The company notes that Leka “doesn’t replace therapy;” rather, it’s a tool for parents and caregivers “to teach through play and make therapy easier, more efficient and constant by bringing therapy home.”

The toy is not yet on the market, but a prototype made its debut at the annual Consumer Electronics Show (CES) event in Las Vegas earlier this month.

Leka co-founder/CEO Ladislas de Toldi chatted with BBC’s Leo Kelion about how he hopes the toy will help children with Down syndrome, autism and other developmental disabilities.

When asked why this was better than any other toy, de Toldi replied:

Robots are very fun, very cute and they really get the children interested. Children with disabilities are still children — they want to play, they want to have fun and the robot allows that. If you use the robot as a learning support, for learning activities and playing activities, children get more engaged in those activities.

Primary research for the toy was done in Paris, and product development was based on studies in the United States and the United Kingdom.

h/t The Autism Site

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Mom Gets Anonymous Note After Son With Autism Has a Public Meltdown

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A little bit of understanding can go a long way.

Lauren Copp Nordberg, from Bainbridge Island, Washington, was having lunch with her son, who has autism, when the stress of a big day got to be too much for him and he had a meltdown. However, instead of just stares and judgement from other patrons at the restaurant, Nordberg got something so much better — a free meal and a nice note.

The Nordberg’s post read:

Our Day Part 2: Lunch Date
I should have known better than to take him out for lunch after a dentist appointment, but he was so excited for pancakes and I promised, so there was no turning back. He remembered he forgot something at home that he wanted, and within seconds he was in a full on autistic meltdown. We had just ordered our food. After several minutes of stares, I took him outside until our food came so he could have his moment without me getting all the stares. Thankfully, he calmed down when he saw food, ate the food, but then amped right back up again. When I asked the owner, Cyndi Moody, for our receipt, she presented me with this. Someone else had paid our bill. There is good in the world and this mama is thankful for the kindness of strangers.

Nordberg posted the note, which said, “Have a great day! You are doing a wonderful job. God bless. From a mother who knows,” to Facebook on Monday, January 18.

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To the People Who Get Frustrated When I Don’t Make Eye Contact

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They say eyes are the windows to a soul. Maybe that’s why I don’t like looking people in the eyes so much. It’s like I’m letting them see everything I’m thinking, like I am letting them see what makes me me, and I don’t like that. 

Eyes are like deep, dark pools in a way. When I look at them, it’s like I am being pulled into them, down down down, ’til I cant breathe or see or think. It is as horrid as it sounds. I know some people (like my parents) get frustrated when people like my brother or I don’t want or see the need to make eye contact. I will sometimes respond to my parents when they say something to me or they ask a question, but I won’t look at them, and they get annoyed at me. 

They say not looking a person in the eyes when they are talking to you is a sign of disrespect. I say expecting, and requiring, people like me or my brother, who are uncomfortable or who literally fear looking people in the eyes, to look at them in their eyes when they are talking is ridiculous. It’s like expecting someone who is afraid of heights to go stand on the top of the Empire State Building with you. It’s just plain not going to happen.

I do get where they are coming from about it. If someone isn’t looking at the person who is talking, it is automatically assumed they are not listening. But, fun fact, I can’t not listen even if I wanted to. My brain catches onto every single word or noise that is around me and amplifies it. So just because I am not looking at the speaker doesn’t mean I am trying to be disrespectful or that I am not paying attention. Some days it is just too much for me. Sometimes I am already somewhat overwhelmed, and adding even more things, like facial cues, that I have to interpret is simply too much for me to have to try and deal with. 

So, next time you see someone who won’t or can’t look straight at you, don’t get frustrated. Sometimes people can only deal with so much at once.

Abby (right) and her brother
Abby (right) and her brother

Follow this journey on Life As An Autistic Teenager.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the People Who Mocked Having a Turkey as a Therapy Animal

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I recently read an article that I felt bemoaned comfort/therapy animals as an unnecessary entitlement in society and complained of a turkey accompanying someone on a plane. It was noted that the person provided documentation from a doctor for having a turkey for comfort/emotional therapy. The article seemed condescending to me, and I believe it assumed people with therapy animals “use and abuse the system.” In my opinion, that kind of language creates an atmosphere where disabled people must constantly “prove” themselves.

Captain Tom Bunn, who is quoted in the story, is a former pilot who now helps people overcome fear of flying. He called into question both the proof/documentation that people with therapy animals provide and the type of animal that can act as therapeutic, saying:

Any therapist can sign off on any kind of animal. Science has proven that when dogs look at you with total devotion, it produces oxytocin, a hormone that shuts down the fear mechanism. The turkey, I don’t think so.”

I feel Tom Bunn is spreading doubt and animosity toward disability. I felt the article also had a level of fear-mongering that the presence of animals constitutes a threat to others, be it allergies, messes or animal attacks. The comments under the article were repugnant and hateful to me, from disdain for the disabled to threats of violence if the commenter is faced with animals on their flight. They seemed to forget or ignore the positive results such therapy animals have provided so many with disabilities, including our wounded veterans. Not to mention the rescue of the animals themselves!

I have bias to disclose: I am on the autism spectrum. As I write this, I am surrounded by myriad birds — a pigeon on my shoulder, a chicken nestled under my arm and a starling sitting atop my tablet are just a few of the birds I care for. Many were rescued/raised by my own loving hands. You could say I have saved their lives, but the reality is, they have and continue to save mine.

I’ve never connected well with people, always feeling like an fearful alien among humans. I couldn’t make eye contact or express my thoughts without fumbling and stumbling on my words. I’ve been ridiculed for this throughout my life. But when I’m around animals, I suddenly find myself. I can converse about them confidently, I have a point of focus for eye contact​, and I feel diminished anxiety in interaction. When an animal is present, it’s like a miracle! Over the years, I’ve found comfort and life lessons with many rescued animal companions, such as turkeys.

With regard to the idea that a turkey can’t act as emotional support, one event stands out in my mind. My husband, sister-in-law and I once held a yard sale. Instead of hiding from strangers, our turkey accompanied me in the yard. As he strutted and displayed for anyone who stopped, I was able to answer strangers’ questions, encourage them to pet and hug my big, friendly turkey and take pictures of people posing with him. That day was just one of many wherein that sweet turkey helped me interact and just generally cope with life. He was not the first and won’t be the last turkey to impact my life.

I could go on and on about how animals (including three very special turkeys) have helped and continue to help me in life, but I fear the detractors would still call foul/fowl on the benefits of comfort/emotional therapy animals, especially unusual ones. If you ever hear or think such things yourself, now you know of at least one person whose life has meaning thanks to “odd” comfort/emotional therapy animals.

A collage photos of a woman with her turkey therapy animals
A collage of photos of Darcey with her turkey therapy animals

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Results of a New Autism Study Surprised Experts in This State

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A new study shows that the number of children with autism in Nebraska is much lower than the national average.

The results, which surprised local experts, show that doctors diagnose one in 128 children in Nebraska with autism, KETV News reported. The national average is one in 68 children, according to the Centers for Disease Control and Prevention (CDC), and in New Jersey, the state with the highest rate of autism, the rate is one in 45 children, and 1 in 28 boys.

The study was conducted by Autism Action Partnership who teamed up with researchers at the University of Nebraska-Omaha.

Dave Pantos, the Autism Action Partnership program director, thinks that there are a few reasons for the relatively low rate, including difficulties in diagnosing the disorder, under reporting of it because of a lack of insurance coverage and families with children on the spectrum leaving the state because of lack of services there, KETV News reported.

Experts expect the numbers to go up in the future, but say that understanding how many people in the state are on the spectrum and where they’re located may be an important step in helping the state to have a better understanding of autism.

Get more on the story from the video below: 

 

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