Tomorrow Is Too Long to Wait for Inclusion

Dancing Backwards And In Heels: Parenting A Special Needs Child

dancingBy Debbie

It is hard being a parent of a special needs child. Read Debbie’s account of feeling under the microscope and at the same time being on a pedestal. A version of this article was originally published at Fumbling About In The Dark.

“And then there’s Adult Protective Services,” the school nurse said. “Crazy, huh?”

Crazy, huh. I restrained myself from asking her, “Do you realize what you are saying?” I don’t think that, unlike previous remarks, this was calculated. I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me. She also mentioned that other school nurses would be worse than her. If they are, then those of us with special needs kids are in deep trouble.

Parenting is never easy. There’s always things that come up that one would never expect in a million years. You love your children, but sometimes you want to disavow any knowledge of them. “That kid? Never saw her before.”

Parenting a special needs kid, however, is, to borrow a pro feminist slogan, “dancing backwards and in heels.”. A parent with a special needs kid is being scrutinized in a way that a parent of a “normal” child can neither begin to imagine nor be willing to put up with.

From the moment Kid O entered the world, I’ve been subjected to the worst kind of scrutiny. Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health. I was terrified when a nurse showed up. She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn’t sought out prenatal care, and, in a word: neglectful.

One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take “no” for an answer. I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around. He told me that that nurse was on vacation. Even though I knew I had rights, I was afraid to say “no.” Much to my shame and horror, he insisted I hand over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper. It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits.

My neighbor, who had had a near perfect homebirth and a nice, large, full term baby, brought by literature on pre-eclampsia because she felt I needed to take responsibility for Kid O’s prematurity. She was smug in her knowledge that her expensive birthing class had produced nothing but perfect births and perfect babies. She was certain she was a far superior mother, so imagine her surprise when she couldn’t console Kid O one morning Months later she apologized to me because one couple in her birthing class had a child with CP, and were being forced out of their condo on account of the baby’s screaming.

Now, granted, it’s damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.

Babies can be fussy. They are wet. They cry. They are tired. They cry. They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep. Same thing if you put them in their stroller.

Kid O had such a disorganized nervous system that these tried and true methods did just the opposite. Put her in her carseat and she would cry hysterically to the point of throwing up all over herself. That didn’t stop until she was around four.

People assume that if someone requires help with toileting or feeding or dressing that they are physically weak. Kid O is not without her ways of resisting something she does not want. Just because she doesn’t have a lot of muscle mass, doesn’t mean that being kicked by her wouldn’t hurt. The girl packs a mean mule kick.

Some mornings it takes two of us to get her into her wheelchair. One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board. Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.
To a casual observer, it probably looks like Kid O is screaming because her mother is abusing her. .Instead, I am being abused by people who, over the years, have jumped to painfully wrong conclusions including an allegation of sexual abuse

I don’t begrudge women their perfect children. I just always wanted the same thing. And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual. I have read of instances of special needs children removed from their parents simply because these people are flawed human beings. For some reason people think they can raise Kid O better than my husband and I can. I had one woman start a whisper campaign against us. Why? Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast. And so it goes.

People have no idea how difficult it can be to guide a special needs child to adulthood. They have no idea how incredibly stressful it can be. They contact DCFS without considering how unnecessary and how hurtful it can be.

The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O’s school. My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, “If anything happens to my wife…” I was grateful for his protectiveness. I could see Kid O’s teaching team shift from being on the offense to realizing what harm they could cause. Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?

When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable. I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children. We are neither sinners nor saints. We are just people who happen to face enormous challenges every day. And, hopefully, with a tremendous amount of grace.

Photo Credit: Elizabeth

You can follow Debbie on Twitter @MissShuganah.

Sparking Conversation About Special Needs Dads

dads of disability

Parents play a crucial role in their children’s education, hence parents’ own well being an important factor. Parenting a child with a disability creates certain challenges to a mother or father’s wellbeing that only others going through similar situations could truly understand. Gary Dietz, a dad of a child with a disability, knows this through personal experience and specifically wants to provide support for other fathers.

Right now, Dietz remains at work on a book called Dads of Disability: Stories For, By, and About Fathers of Children Who Experience Disability (and the Women Who Love Them)Dads of Disability focuses specially on fatherhood and children with disabilities. Recently, Think Inclusive caught up with Gary Dietz to learn more about the project.

Dads of Disability

Dads of DisabilityDietz explained his vision for Dads of Disability. “What I wanted to do was have a collection of stories that show the true emotions and feelings dads have feltinsecurity, fear, happiness, aspiration, anger, transformation, and transitioning. I wanted to show these really scary and authentic feelings fathers have in way that very few books have shown before.”

Due to the rarity in fathers expressing these emotions, one might feel like they are the only ones going through it. Dietz recounts his own experience, “There was a huge challenge to find out if what I was thinking, other guys were thinking. Or was I crazy? Was I being inappropriate having the thoughts that I had?” Getting involved in advocacy, he found the answers to his questions. Dads of Disability will, in a way, document what Dietz came to know because he heard from many other fathers who felt the same.

He went on to tease a couple stories. “There is a story called ‘Take Me Out to the Ball Game’, which is about a father whose child has phenylketonuria, the disease where you can’t eat protein or you’ll get really sick and die. There is a story about the process of a very religious man who was considering leaving his daughter and wife when he found out his daughter had Down syndrome and the process by which he doubled down and chose to dedicate his life to his family.”

Why Only Fathers?

If you look at the Dads of Disability website, you will notice Gary Dietz remains prepared to answer anyone questioning why he only focuses on fathers Asked about his proactive approach to possible critics, Dietz replied, “The core thing I want to get across from a positive perspective is that there are amazing and wonderful books out there targeted at women. There are amazing and wonderful books out there targeted at families.”

Gary Dietz

Gary Dietz

He even admitted, “There are amazing and wonderful books out there targeted at dads.” He noted however “They tend to be what I call the ‘single diagnosis family story.’ The most famous example is Dick and Rick Hoyt, an amazing family with an amazing story.” Instead, Dietz collected submissions from various authors and poets which makes Dads of Disability unique. Basically, the book presents a resource with myriad perspectives, all for and about fathers.

Addressing critics who believe the focus belongs on the child not the father, Dietz said the following, “Of course it is about your family and the person with the disability and other family members…but guess what? Just like on an airplane they teach you to put the oxygen mask on your face first. If you are not taking care of yourself emotionally, economically, and physically, you are not going to be there for your child.”

Sparking Conversation

While Dads of Disability features stories about fathers, Gary Dietz sees the book as a read for mothers, wives, caregivers, and others too. “a wife or mother say to her husband ‘Hey, did you ever feel like this?’ A dad might say ‘You know I really did feel that way when we got the diagnosis but I never talked about it with you because I thought it wouldn’t sound supportive.”

Educators could gain insights helpful in connecting with special needs families. “I think it will be exceptionally useful for formal educators to inspire meetings and to have reflective conversations.” Dietz added, “It’s also for everyday people too, the goal is the same, to spark conversations that might not have happened before.”

He stated “This book isn’t going to be everything for everybody but I think it is going to address the emotional life of a father of a child with a disability.” Ultimately, “The goal is to stay authentic and try to get positive experiences to as many people as possible.”

Dads of Disability will become available in May. In the meantime you can preview selected entries here. To learn more about the forthcoming book go to www.dadsofdisability.com.

Photo Credit:  Gilzpics

Anti-Bullying from the Parent’s Perspective

No-Bullying 2

A mom and/or dad concerned about bullying at local schools should know she and/or he can take action to help resolve said issues. On Thursday we at Think Inclusive published insights from anti-bullying speaker Tony Bartoli regarding how educators can work to promote an anti-bullying message (“Anti-Bullying from the Teacher’s Perspective”). Today we examine Bartoli’s advice for parents.

Anti-bullying strategies for parentsBuilding Community

Asked how parents could work to prevent bullying Tony Bartoli stated “Parents can develop support groups and community activities that foster bullying awareness.” He added “Definitely try to involve the school,” warning against inadvertently developing an atmosphere pitting parents versus educators and administrators.

Bartoli certainly sees bullying awareness as a communal endeavor. “Bullying has to be something that is addressed from at times all hands on deck approach, to where parents can connect with other parents. Schools can connect with other schools.”

When building community Bartoli reminds to not forget about the relationship closest to you. “Parents, communicate with your son or daughter. What you do is set the tone ahead of time that we understand bullying is a big issue.” Communication proves vital. “Keep the communication line open. (Say to your child) ‘If you’re getting bullied in school in any way come talk to me because I’m going to do what I can.’”

Doing What You Can

Parents maintain different choices to assist remedying bullying. Bartoli strongly recommended meeting your child up at the school and talking to the administration, “Meet with your son or daughter going to the school and meeting with some of the people in the administration. Say ‘I don’t know if we’ve all heard about this, but I have this situation with my son or daughter that’s very personal to me. Now I want to find out what our next steps are.’”

Beyond the school hierarchy you can leverage the anti-bullying community you built. “What parents can do is communicate with each other, brainstorm, and get ideas. Approach the school.” He expanded on the term “ideas.” “That’s a very big word right there, small in letters but big in effect- ideas. Have ideas flow back and forth from parents.”

Upon anti-bullying ideas coming to fruition, consider sending inquiries to the media. “Approach local media, it may even be just the small community paper. Say ‘We’re parents who want to have our voices heard. We’ve developed this program.’” A little publicity can go a long way.

Reaching Your Last Resort

Unfortunately sometimes you may encounter resistance in your efforts. Perhaps an administrator constantly dismisses your concerns. In such a scenario Bartoli suggests taking your worries to the next level on the school hierarchy. “I say this as a last resort but more parents are doing this, making their voices heard at the local level at the school board meetings.”

He advised “Do it in a constructive way but do it in a way that will address the issue and do it factually.” One way includes sharing specific instances. If that fails, Bartoli brought back up the media. “Go to local media outlets and do what you can to report this to local news stations. They might not do the story but they might.”

The final last resort involves changing schools. Bartoli recalled a mother who ended up taking said action. “She pulled her eighth grade daughter out because the bullying was relentless and she had already gone to the school board.” The mother told Bartoli the breaking point. “She said kids were kicking crutches out from under her (daughter). She said ‘No way! Tony these students need to learn empathy.’”

A Final Plea from Tony Bartoli

Tony Bartoli ended our interview with a plea to not just parents but all adults involved in education. “Teachers, parents, schools, administrators, local school boards, listen because it’s out there and if we just shut down or say that our way is the best way, these kids are going to shut down. We don’t want that.”

For more about Tony Bartoli visit www.tonyb4hope.com.

*Image courtesy of Christopher Hayes, Wikimedia Commons

Pin It on Pinterest