“Do you ever get tired of hearing people ask you how you do it?” another special needs mom recently asked me. I do, but I also know that people don’t necessarily mean anything negative by it. They’re genuinely wondering how, as a working mom of two kids including one with special needs, I manage to juggle it all. That’s exactly what I wondered about an extraordinary couple I recently read about.
There are 11,000 children in state custody in Oklahoma. The 100 of them who have special needs are least likely to find home, and typically end up living in long-term hospitals or residential facilities. Misty Marksberry and partner Laura Merideth adopted one of those children, a little girl with a seizure disorder name Anastayja. Last December, she died. “Before she passed we promised her that her legacy would continue and that we would forever take care of kids like her,” Marksberry said.
And so they have, as recently reported by Fox 25 News. The couple went through special medical training, named their home Annie’s House and now foster six children, all of whom have intensive special needs. Marksberry stays home to care for them; she has even sewn feeding tubes onto dolls, so the children can see dolls who are like them. The couple are planning to adopt four-year-old Zamaria, who was epilepsy, cerebral palsy, and medical issues. They plan to adopt all the kids they foster if their parents no longer have rights. And they would like to expand Annie’s House, moving into a larger home with more space and getting a van to fit lots of wheelchairs and equipment.
Kids with special needs thrive in a home in a family-like setting, experts agree. This couple is giving these children a chance at life. As Marksberry said, “We want to give them every opportunity to be a child like any other.”
If you’d like donate to Annie’s House, click here.
Officially, Wednesday was Spread the Word to End the Word awareness day, dedicated to raising awareness about why the words “retard” and “retarded” are so hurtful—both to people who have intellectual disability, and to people who love them. But today is a good day to be thinking about it, too.
A lot of parents have spoken out on the topic, including Stephanie Graham. She’s mom to beautiful 3-year-old twins, Max and Addie. They were born premature and as a result, Addie has a hearing impairment and Max has cerebral palsy.
Stephanie is a teacher in high school, and created an awareness video that has been seen by all 3000 students in her school, and others around the district. It’s a very clear and powerful explanation of why the word is so demeaning. Please, take a look.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia (formerly of AutismWonderland).
I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.
Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother referred to it, she’d say, “She’s not retarded. She’s just a little slow.”
I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.
The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.
There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.
Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.
My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.
…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.
My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.
My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.
Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.
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Researchers asked 1000 mothers of kids ages 6 to 18 in Belgium and the Netherlands to complete a questionnaire about parenting tactics; 552 of them had a child with autism. Moms of kids with autism were more likely to adjust their approach to suit their children’s needs. They were also less controlling than other parents—yet more involved in problem-solving for their kids.
The results may come as no surprise to autism moms or to mothers of kids with other special needs. My son, Max, has cerebral palsy, and I’ve had to experiment to find the right discipline tactics. For years, Max didn’t yet cognitively understand a lot, and so threatening a punishment had no effect. Often the best approaches I found was to praise him for behaving well. When he said “No” instead of screeching in frustration, for example, I’d say “That’s great that you are using your words!” (Positive parenting also works well on feisty “typical” 9-year-olds who may or may not be my daughter.) What’s also worked for us in terms of setting rules is having a reward system in place. Max knows that if he finishes his homework, he is allowed to watch one YouTube video of fire trucks, one of his fascinations. Fellow blogger Lisa Quinones-Fontanez of Autism Wonderland finds it helpful to have a list of house rules (including “Walk nicely—no running” and “Listen to Mommy and Daddy”) that she can point to and go over with her son.
Recently, when Max refused to stop stomping his legs against the floor as he watched TV—a habit he developed months ago that showed no signs of abating—I decided to let him deal with the consequences. One framed photo had already fallen off the wall and broken, as a result. Then it happened again. This time, Max wailed for a long time. ”I’m sorry!” he said, again and again. And you know what? He’s stopped stomping.
Parenting and disciplining kids with special needs has its special challenges. And yet, in many ways, it’s like parenting any kid: You have to adapt your approach to suit your child.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
When my son, Norrin, was diagnosed with autism five years ago, I wanted to fill every moment with therapy. I thought therapy was the answer to everything. If I’m going to be completely honest, I believed that if we bombarded Norrin with enough services – he’d catch up. At barely three years old, Norrin attended a special education pre-k program where he was given ABA, Speech, Physical and Occupational therapy. In the afternoons at home, Norrin received 10 additional hours of ABA therapy as well as speech therapy and occupational therapy at a sensory gym. We took therapy seriously. We didn’t cancel, we were always on time, we never asked to cut sessions short.
Norrin is now eight years old. He goes to a special education school an hour away from home where he still receives ABA, Speech and Occupational therapy. And in the afternoons, he receives an additional 10 – 15 hours a week of ABA therapy. I no longer see therapy as a quick fix but as a mom who works outside the home, I rely on the therapists to work with Norrin and do the things I cannot do. I want to be Norrin’s mother, not his therapist.
Yesterday, I received an email from our main therapist asking if we wanted to add weekend hours. Without even thinking, I responded no. And I even requested that we reduce the number of hours of therapy Norrin currently recieves.
There was a time when I wouldn’t think twice about having a therapist work with Norrin on the weekends. Now I wonder if it’s worth it.
In order for Norrin to become independent, he needs to be allowed to think for himself, to make mistakes, come to his own conclusions and solve his own problems. Norrin cannot live his life, thinking a therapist will be his shadow.
That’s not how I want him to live. I don’t want Norrin’s days and weekends filled with therapy. Our weekends belong to us. Our afternoons belong to us. I want time with him. So it’s time to let go a little and say no to more therapy.