thespecialparent.comSpecial People Parenting Special Kids

I was pleased to receive notice about a speech an amazing woman, Julie Beckett, gave recently to a group in Madison, WI (I am so going to have to get up there someday with the excuse of visiting my brother)

Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused severe damage to her body, including her ability to breathe. She was placed on a ventilator and spent three years at a pediatric intensive care unit. Created in 1982, the home and community-based waiver program often called the Katie Beckett Waiver program, allows children who would otherwise be hospitalized or institutionalized to get treated at home and continue to maintain Medicaid eligibility. Katie was the first recipient of this waiver. Her mother, Julie Beckett, worked with Congress to obtain this waiver.

In her keynote, Julie shared the timeline for the national healthcare reform legislation:

May 20: bill will be introduced
Aug 22: they hope to pass it
Jan 2010: they hope to have it in place

Julie shared that they are moving very quickly to get this reform in place and that the current draft of the bill does NOT include provisions for individuals with disabilities; it basically treats everyone the same whether they have special needs or not.
She emphasized that her decades of advocacy work have taught her that even worse than being uninsured is being *under-insured*–and that we need to make sure that people with special health care needs are included in this bill.

Katie and Julie Beckett asked us to participate in the phone-calling efforts to change the bill to include provisions for individuals with special health care needs.  We can’t leave individuals with special health care needs behind as we “move forward.”
Tomorrow, May 13^th is the national call-in day for this issue
.   Please see the instructions below from the ARC & UCP on how to help tomorrow.

It’s easy to do and so important.  Please share this and thank you very much for your help!

The Arc and UCP Needed to Make Calls to Senators on May 13^th

Fixing the health care system is a top priority this year for Congress and the Obama Administration.   While there is commitment by some to include long-term supports and services in health care reform, there is no guarantee that this will happen without strong public support.

The Arc and UCP are working with several national disability and aging organizations in sponsoring national phone-in days to show public backing for including long-term supports and services in health care reform. We must establish this public support with Congress. We want this joint effort to generate at least 10,000 phone calls to the Senate on May 13^th.

Toll Free Number: 866-459-9232

What to say:

• Hello, my name is ____ and I live in ____.
• I believe that health care reform must include long term services and supports.
• I urge Senator ____ to support including long term services and support in health care reform.
• This issue is so important to me because ___________________
• Thank you.

The Coalition for Citizens with Disabilities is providing this toll-free number for constituents of member organizations to call their Senators.  We need to demonstrate a strong response from The Arc and UCP, your members, and your constituencies.

» Spread the word «

Dial the toll-free number between 8:00 AM and 6:00 PM Eastern and ask to be connected with your Senators. If the line is busy, try back later. Once you have completed the call, be sure to give feedback.

Background:
Why Include Long-Term Supports and Services
in Health Care Reform
While 48 million people lack insurance/coverage for their health care, 250 million people lack insurance/coverage for long-term services and supports. Ten million Americans daily need long-term services and supports with 40 percent of them under the age of 65. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

Virtually every American will face the need of a family member needing long-term services and supports. And yet, the nation lacks a comprehensive national system for financing and delivering long-term services and supports to individuals with disabilities of all ages.

While there is commitment by some Senators to include long-term supports and services in health care reform, there is no guarantee this will happen.

The Senate Finance and Health, Education, Labor and Pensions Committees are are scheduled to finalize their legislative proposals for health care reform within the next two to three weeks. The bills are expected to be merged on the Senate floor in June. The three House committees are also developing their own legislation, but are not as far along as the Senate.

We must call on the Senate to provide real health security by including long-term services and supports in health care reform legislation!

Thanks to Johanna Mattern Allen, the ARC and UCP for this information

© 2009 The Disability Policy Collaboration

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Just felt so wonderful about how many of you either posted or emailed me about the G-Tube and I really appreciate all the kind words of hope and support. Katherine returned to school this morning – a bit sore but over all doing well. The feedings so far seem to be going pretty well. The eating? Well we’re working on that So far…..so good!

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New Year is a time when people are celebrating new beginnings, making resolutions and looking forward to the year that is coming. It is probably in this vein that the John Travolta/Kelly Preston family went to the Bahamas with family and friends this weekend. Which makes Friday’s events so devastatingly tragic. Parents should just never outlive their children. While there is no certainty to the cause there is a lot of talk about Kawasaki’s Syndrome (KS) which Jett had as a child. But there is also talk of Jett having a seizure in the shower and then being there for some time before being found. Of course it’s new and the details are incomplete. Apparently there is even a rumor that Jett was autistic but this has been denied by John Travolta (it should be noted that scientology, the religion practiced by the Travolta’s, does not recognize autism as a disorder).

All the speculation can be done by someone else at some other time. I think at a time like this we’re all special parents – because no matter what all our children are special. Jett Travolta is only a bit younger than my daughter Katherine. My daughter is sleeping, breathing in her bed tonight. Her younger brother is in the next room letting out some very cute baby noises while he sleeps.  Jett is not with his family. It is not natural, not normal, it’s not even fathomable.

I’m not a big “resolution” person per se…mostly because I used to have all these good intentions – but my follow-thru was fairly lacking…like many people My new years tends towards reflection rather than idol promises that I’ll inevitably bail on 2 weeks in. I had already had some thoughts about this past year. It was a rough one on so very many levels. Katherine’s bouts of pancreatitis, her behaviors, my own struggles with RSD – I wasn’t going to be weeping as 2008 left. Because of this I felt like I had lost some of the joy of my kids. No – I’m not meaning the rosy Carol Brady “I never cook, have a maid and my children are beautiful and annoyingly perfect in every way” kind of joy. I am talking about that every day joy of savoring your kids victories, the simple observations they can make which just make you belly laugh – unless you are too caught up in being overwhelmed in the every day. And then a news report like this catches me like an avalanche in snow country.

For the Travoltas there is an abyss they must struggle to pull themselves out for the sake of their other child, Ella, who will also be struggling to cope with the loss of her big brother. For the rest of us watching the news on this it could be a blip on the screen, a moment of silence as a fellow parent for those whose suffering that you can only imagine. I would emplore you to make it one more thing. I would ask you make it the impetus for taking time each and every day – even if it is only a few minutes to savor your children.

We all spend time with our kids each day – we feed them, clothe them, bathe them, get them to and from school, doctors, therapists etc. This isn’t the part I am talking about. I’m talking about making sure at each point you try to get to their level, to watch the world with the wonder your child has for it. To truly LISTEN to what they have to say – no matter how mundane you may think it will be. Sometimes its so crazy busy we get into a rote pattern with what has to be done – eating, bathing, for some of us medications, therapies and that’s only their stuff! Its times like this where some high profile individual loses a child that we need to make very sure that that death was not in vein. I think one of the best ways to honor the life of that child is to make sure that your child benefits from it. Let them benefit by having some truly special time each and every day with you.

Each day is precious and you never know when it will be the last one. Don’t make it a time of regret for all that could have been…take today to make memories that last a lifetime, and beyond.

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and all thru the house the only quiet was that one little mouse! And that’s because he couldn’t get a word in edge wise for all the ruckus from excited children! It’s pretty amusing actually – It’s the first year that our youngest actually gets it and Katherine is quick to show her vast knowledge of everything Christmas – be in decorating trees, making presents, wrapping or the tradition of feeding Santa. She’s quick to remind him she’s the authority on all things Christmas.

It’s also interesting the difference in the two Katherine’s that I see. Katherine is quick to succumb to her innate desire to be a child and the center of all attention. Just envision the shining star over a manger in Bethlehem…..kinda like that But when given the opportunity to rise to the occasion she can really surprise. Maybe that is the key – being given OPPORTUNITY.

I’m the first to admit – I find it hard to believe my kid is 17. She’s still my babygirl! LOL I do however TRY to give her opportunities to act her age wherever possible. Not that I’m perfect about that. We’re blessed however to have a woman who comes in to help us – because of Katherine’s behaviors in large measure in addition to working with Katherine on her behaviors and helping us handle her when she’s out of control, she helps Katherine with all types of things. Getting her behaviors under control, activities of daily living and life skills – things she will need to be a productive member of society and to hopefully have an opportunity to live on her own.

Katherine’s helper/worker/support person is paid for by a medicaid waiver. For those of you who have one for your loved one you know what a blessing it can be. For those of you who have someone on a waiting list you know how important it could be. For those of you who do not have or know about medicaid waivers let me give you the basics in a nutshell. A waiver as described in the Merriam-Webster’s dictionary as “the act of intentionally relinquishing or abandoning a known right, claim, or privilege ; also : the legal instrument evidencing such an act”. In this case it means that in certain defined circumstances medicaid will allow individual states to abandon certain rules for granting medicaid payments for things it wouldn’t otherwise pay for or waive certain requirements (such as financial ones) to give states flexibility to allow medicaid coverage. The waivers differ from state to state. You can find out more about waivers that may be available to you in your state by checking here.

The waiver would be a wonderful thing *IF* people who needed one could get one without waiting on a list for YEARS. The other major problem is that while waivers are federally funded – they are managed by the state and are not transferrable so once you have one you either stay put or – and it’s a big or – you start the whole process over. When I tell you that starting over is not desirable – just trust me on that.

Waivers are actually a pretty cost effective measure too – keeping Katherine at home costs the state FAR less than if the state needed to pay for her to be institutionalized.

Its for this reason I’m hoping some of you will be willing to go over to change.org and support an intiative for waivers being fully funded. You can get directly to this initiative by clicking here. Some of you may have seen the widget I place on the page the other day.

I hope that you all have the best of holidays – whatever it may be that you celebrate. Holidays are for families and bringing out the best in people. Waivers are like a present you get to have everyday – it gives those of us blessed enough to have one for our loved one the ability to have them living at home or other settings our loved ones approve of -  giving them opportunities that you and I just assume we will always have. For us, Katherine’s waiver means everyday is a blessing and an opportunity for her to grow and rise to that occasion.

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Thanks to Johanna Mattern Allen for forwarding this information to me.

Kennedy Krieger has a special place in my heart. It’s a hospital in Baltimore, Maryland which is only for special kids like ours. They are located within the Johns Hopkins campus and have an incredible wealth of talent available to them. Because of this, not only are they able to do some amazingly wonderful things in treating our kids but they are at the forefront of doing some spectacular research as well. Johanna sent me the following notice that I felt compelled to share with all of you. As caregivers some of us special parents may qualify for this study and I know that by getting participants to answer these questions they are best able to help others. So if you have some time and you fit their requirements, please consider helping the wonderful people at KKI out.

National Institutes of Health and Johns Hopkins Research Project  – Share Your Experiences and Help Others

Dear Parents and Caregivers,

You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University.

*Why is this study being done?*
To learn more about how caregivers adjust to having a child with Down syndrome (DS). We are interested in hearing from caregivers who may be learning to adjust and also from caregivers who feel well-adjusted.

*Who can take part in this study?*
You must be 18 years of age or older and must be the primary caregiver for a child with DS. Please fill out only one survey per household.

*What is involved in this study?*
There is one survey that takes approximately 20-30 minutes to complete. It asks about your thoughts and feelings about your experience as a caregiver to your child.

*What are the risks of the study?*
There are no known risks of taking part in this study. If taking the survey makes you feel upset, you can stop taking the survey at any time. If it causes you to become upset or worried about yourself or your child, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.

*Are there benefits to taking part in the study?*
You will not personally receive any benefits from taking part in this study. We hope to learn more about how caregivers adjust to having a child with DS and pass that understanding on to help caregivers in the future.

*Do I have to participate?*
No, you do not have to take part in this study if you do not want to. Your decision to take the survey will not have an affect on your child’s healthcare. If you begin the survey, you can choose to skip any question that you don’t want to answer. You can also stop taking the survey at any time. If you finish the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.

*Who else will know that I am in the study?*
We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This study will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.

*How do I participate?*
The survey can be found online at www.downsyndromesurvey.com. If you prefer to complete a paper version of the survey, please contact Megan Truitt at (301) 443-2595 or mtruitt@mail.nih.gov to receive the survey and a pre-addressed and stamped return envelope. Any contact information you give to the researchers in order to mail the survey will be immediately destroyed after it is mailed. Also, if you are more comfortable completing the survey over the phone, please contact Megan Truitt (see contact information below) to arrange a time to do so.

Thank you for your interest and time! If you are taking this survey online, please print a copy of this consent form so that you have the researchers’ contact information.

Also, after the study is complete, we plan on giving out a short summary of the results through the recruitment sources as a way of saying thanks for participating. If interested, please check the Kennedy Krieger Institute website below for the study summary: www.kennedykrieger.org/kki_cp.jsp?pid=1399

Megan Truitt
Associate Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 443-2595
mtruitt@mail.nih.gov

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979
barbarab@mail.nih.gov

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Well Katherine spent another 5 days in the lovely 4West med/surg unit at Children’s Healthcare of Atlanta Egleston (hey ladies!!) with another bout with pancreatitis. Not that the accommodations are pretty darned nice (and the food is really darned good for a hospital) but I’m ok with that being our last stay for a while. She’s been home for 3 days and I’m still exhausted – and behind on everything. Because to top it off my youngest’s 3rd birthday was this past Friday. So it was pretty crazed week last week – but you all can relate – I know you can!

Because the pancreatitis is an ongoing concern we are now having the exciting <rolling eyes> opportunity to change seizure medications. Oh let’s be fair its also one of her 2 mood stabilizers as well because if it’s got to be exciting we know how to do it RIGHT. <eyes rolling>

Those of you with kids who have seizures know how hard it can be to find the right medication and right dosage and certainly it’s no different for those of us with kids who have mental illness. Since the anti-epileptic medications are frequently used in mental illness as well we were fortunate that we could piggy back some of what Katherine needed for the bipolar treatment with what she was already on for the seizures. Unfortunately what is a blessing in one direction can be a real potential for peril in the other. We are going to another anti-epileptic which is also used in the treatment of bipolar disorder so I’m hopeful (but far from certain) that this transition will work. But as there is no choice, we’ll just take it one day at a time. At a minimum it’s a 4 week process so wish us luck!

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Oh it’s being covered everywhere but honestly my head has been buried in the sand dealing with the first week of school here. (yea – we end early too) so I’ve just been reading along and if you haven’t catch up by clicking on these links here:

• Tropic Thunder – Once Upon a Time…There was a Retard
• Sorry Mr. Stiller you’ve crossed the line
• Never go full Retard
• Disability groups organize
• Just the facts about Tropic Thunder

As of this writing my understanding is that the viewing Dreamworks promised isn’t going to happen until the 11th hour on Monday just before this movie premieres. I think Patricia Bauer has done an amazing job of covering this issue so I’m not going to add much more except that the statement below pretty well says what I’d like Ben Stiller, Jack Black and Robert Downey Jr to know. I want to believe these are good although misguided individuals who don’t get the greater harm they are doing to our loved ones. Hopefully they will read the following and reach out to learn more

THE R-WORD ISN’T JUST HURTFUL,
IT’S HATE SPEECH.

WHAT IS HATE SPEECH?

Hate speech occurs when a majority group freely makes jokes about a minority group including negative stereotypes and negative images, not just language. It is commonly seen as harmless by the majority, but it sets the stage for more severe outlets for prejudice, harm and abuse.

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE AT GREATER RISK OF VIOLENCE.

- 1 in 3 children with disabilities are victims of some form of abuse, sexual abuse, or neglect. (Sullivan & Knutson, 2000).

- Individuals with developmental disabilities are 4 to 10 more times more likely to be victims of a crime than people without disabilities (Sobsey, et al., 1995).

- Children with developmental disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities (Crosse et. al., 1993).

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE DISENFRANCHISED FROM JUSTICE.

- Many people with intellectual disabilities are not able to articulate the abuse they’ve sustained.

- Many victims with intellectual disabilities are not perceived as credible witnesses.

- Abuse often occurs as part of name calling, bullying, hazing, or other targeted attacks based on disability status. THIS IS A HATE CRIME.

ENDING THE USE OF THE R-WORD IS MORE THAN A “POLITICALLY CORRECT” NOTION.

- “Retard” and “retarded” are derogatory and dehumanizing terms– on par with the N-word when used to describe African Americans, and various hateful terms used to describe members of the Jewish, gay and lesbian and other minority communities.

- Self-advocates with intellectual disability have clearly stated that negative language leads to harmful action, discrimination, abuse, negative stereotypes, disenfranchisement, and violence.

SHOULDN’T PEOPLE WITH INTELLECTUAL DISABILITY JUST LIGHTEN UP? IT’S A JOKE!

- NO! People with intellectual disabilities have a history of institutionalization, genocide, forced sterilization, segregation, and being regarded as ‘less than human.’

- More than any other group, they experience record unemployment, significant physical, mental and sexual abuse, and limited rights.

- This discrimination and victimization continues, in large part, due to antiquated, discriminatory portrayals in the media and pervasive prejudice.

WHAT’S FUNNY ABOUT THAT?

As my mom used to say – WORDS HAVE MEANING – BE SURE YOU MEAN WHAT YOU SAY.

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I grew up blessed to have a fairly extensive family network. As with any family some were closer than other for a variety of reasons usually having to do with geography. One of my fonder early memories was visiting cousins in Ayer, Massachusetts – especially Cousin Edith. I was pretty young, I kind of knew something was “different” but I couldn’t put my finger on it and to be honest – she was fun….I just didn’t care! She always was happy and always interested in what *I* had to say or show off. I was always incredibly impressed that I had an olympic athelete in the family – one who had medaled in swimming no less! I thought she was amazingly cool! It was only years later that I understood that Edith was different because she had “Down Syndrome” and that the olympics she had competed in was Special Olympics. It didn’t make Edith any less cool however – in some ways it was more cool that despite any disability she lived this totally cool life and had such success and accomplishment.

Today, I received a note from Edith’s sister Ruth telling me that Edith had passed. I haven’t seen Edith or Ruth in years but I remember visits there with such fondness and joy that I wanted to share the wonderful eulogy that Ruth has written which made me even more happy to be able to say she touched my life and happier to know my Aunt Harriet and Uncle Richard were such groundbreakers – which I guess I should have known but in my family the fact that Edith stayed at home just never seemed anything other than normal to me. I like to think that this early exposure to Edith and my families treatment and incorporation of Edith into our lives gave me a better ability to make the decisions I have about Katherine. For this and so many other things I can’t begin to enumerate I am so grateful to Edith, for letting me just love her for her, to Aunt Harriet for having worked so hard to make sure that Edith had as “normal” a life as Ruth or Frank and to Ruth and Frank for being caring siblings to continued to care for Edith long after Aunt Harriet and Uncle Richard were gone. I hope to one day speak to you so that I can take lessons from you to help Katherine’s siblings long term.

EDITH LOUISE MAXANT

August 12, 1944  – July 24, 2008

On August 12th 1944, a daughter, Edith Louise Maxant was born to Capt. Richard C. Maxant and Harriett (Henn) Maxant.  After taking her to several specialists, they followed the best advice, “Just take her home and love her.”   So, Edith Maxant became one of the few Down Syndrome babies to grow up at home and one of the even fewer children that became part of the community. Her Mom, Harriett, also became an advocate for children with disabilities. She took Edith to parents of special needs children and encouraged them to let their children live at home and be active in the community.

Edith had all the opportunities to do everything a “normal” child could do. She took swimming lessons at Sandy Pond and eventually overcame her fear of deep water and would swim across the pond and back!  Edith took ballet, tap and baton twirling lessons from Mrs. Desmond, participating in the recitals and never missing a step.

Edith was upset that her younger sibling got to go to school because it was “My Turn!” after her older sibling started school. Ayer had no special needs classes, so her Mother found Rollstone School in Fitchburg and drove her over every morning and picked her up every afternoon. The teachers at Rollstone School all loved Edith. She organized the kids on the playground and taught them how to swing a jump rope, how to play hopscotch and other games which she had played at home with her friends and siblings.  Harriett soon discovered Edith could take the train to Fitchburg every morning. The conductors all watched out for her and loved her cheerful personality. A taxi picked her up at the train station and took her to school and Harriett picked her up in the afternoon.  When Ayer started its special education classes at Page-Hilltop, Edith was one of the first students.

Edith had an infectious personality and a beautiful smile.  She always loved everyone, she seldom forgot a name or face. She did not take offense when people shied away from her, but tried to win them over with her gracious comments and sweet personality. Even as a child she did not let unkind remarks faze her. She would say, “It’s OK, they don’t know better.”

As programs for the handicapped grew, Edith grew right along with them.  She loved to jitterbug and wanted to attend every single sock hop put on by the Association of Retarded Citizens. (ARC)  She also loved to bowl and her Mom would take her every week to bowling at Mason’s bowling alley in Fitchburg.  Edith participated in the Special Olympics and won medals in both bowling and swimming. She would walk downtown Ayer to show her medals to everyone.

Edith was a member of the Federated Church and attended Sunday School and Vacation Bible School. She had perfect attendance medals for almost every year. Edith learned how to read and write and was never as happy as when reading her Bible. She often attended the services at other churches when people were willing to give her rides.

Everyone who knew Edith was touched by her life. She taught people how normal it is to love and interact with others regardless of handicaps. Edith stayed young, and as her playmates outgrew playing with her, she took to riding her bike and walking around town. People in Ayer grew accustomed to seeing her and would often offer her a ride home.  People learned that Edith was just…Edith…and they accepted her for herself; a loving, kind, gracious person who would not forget you and who would always try to help others

Donations can be made to: the ARC, (Fitchburg); the Special Olympics; or the Gideons.

Edith leaves behind: her brother, Frank Maxant, and her sister, Ruth Maxant-Schulz, both of Ayer; niece, Diana Simon of Bethesda MD and her two boys, Jeremy and Gabriel; niece, Christina Andres of McKinney Tx;, her daughter, Payten; niece,  Amanda Schulz of Ayer; nephews, Curtis Schulz of Ayer, and David Schulz of Columbus Ohio; and many cousins.

God Bless and God Rest Edith.

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I just spent the past week at Childrens Healthcare of Atlanta – Egleston on 5West (big shoutout to the great staff there!!) Katherine developed what we believe to be acute (rather than chronic) pancreatitis. And if that wasn’t enough to cause this poor kid enough insane pain to break my heart she also had a great case of fecal impaction. Well I guess the good thing is that we got a two for one stay – got completely cleaned out while we dealt with the pancreatitis.

It was the second time I’ve really had to deal with hospitalization for Katherine since Donovan was born. It hasn’t gotten easier. As awful as it was I know full well I’m really lucky. I have both sets of grandparents who live within 10 or so miles of us and are

1. retired (or mostly so)
2. available (with rare exception)
3. very involved with their grandchildren

My father and stepmother were with me as we took Katherine to the Emergency Room. Philip’s parents took over picking Donovan up from school. Of course that was only the first obstacle – we had a full week of obstacles while we juggled getting my husband to work, Donovan to and from school all while trying to maintain some sense of normalcy for him and someone to come up and relieve me once a day for an hour or so in an effort to make sure I wasn’t headed for a rubber room by the time this whole week was over. All things considered the week went pretty smoothly but it could have easily been disastrous!

At age 16 my parents left me at night when I was in the hospital. My mom was there all day with me but leaving me at 8pm and returning at 9am or so the following morning really wasn’t a problem. This is not even a consideration with Katherine. Katherine got freaked out every time I walked across the hall to the family kitchen to grab a cup of coffee let alone what would have happened if I had left her overnight and yet without my family I’m not sure what the heck would I have done!

We were in the best possible place, not only for Katherine’s medical care (a top rated children’s hospital in smack-dab in the middle of Emory University) but a children’s hospital is only dealing with children and is set up to give a lot of support to parents and the small patients alike. That being said I’m certain (because I read the handbook) that Donovan would not have been welcome to spend the night although he was welcome to visit during visiting hours. Realistically with all that was going on with Katherine physically however (and trust me when I tell you I’m doing you a favor by sparing you the gory details) having a toddler (who is making up for lost time with regards to the terrible twos) in the middle of all that was going on there was not going to be in any way desirable. I consider myself pretty good at handling both kids at the same time but even I didn’t want any part of that action!

About 2 days in as I was figuring out how Donovan was going to be picked up by one set of grandparents and transferred to the other because of various scheduling issues it suddenly occurred to me that there had been a time in my life where this whole thing would have been impossible. How do parents who have no family support or are single parents do it all under these circumstances? It suddenly dawned on me that eventually I wasn’t going to be so lucky. My parents as well as Philip’s are getting older and at some point I could very well be on my own in having to handle a situation just like we had this past week. Of course I hope it’s not going to be for a very long time, but I can’t really count on that. Because of this I need to figure out some basic kind of plan to have in place just in case. Realistically it’s probably not quite as important as all the legal plans, financial plans and the life plan or letter of intent….but it could go a long way to increasing my peace of mind to have something written out – Just In Case.

I went to therapy several years ago – things had just gotten catastrophic in my mind – work, home, everything. I couldn’t function except in the most basic of ways. My therapist – who I wish I could clone for the world he’s just that good – said ok so what’s the absolutely worst case scenario? I described it in vivid detail. He said ok. So now we’re going to write down what you’re going to do in that worst case scenario. He and I came up with the plan and it brought me some real comfort. I carried that plan around with me for quite some time. I was certain I would need to call on it at any moment. While I haven’t carried it around for the past year, it still sits in my jewelry box – Just In Case

Let’s just hope the Just In Case never is. Meanwhile I’ll continue to get my plan in place

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As Good Morning America played in the background of our morning chaos yesterday, I quickly hit the record button on the TiVo. A parent and her toddler who is autistic were forced off an American Airlines flight. The mother took a train up to New York City to appear on the show.

I’ve watched it all now and let me tell you how much I hate these stories. Unless you’re there it’s always hard to judge in hindsight. However I still felt it was worth putting out there. I feel for this mother!! I have been on a plane with both my daughter who has some truly autistic behaviors (not that the paranoia from Katherine’s psychosis doesn’t make getting thru airport security bad enough). Quite frankly it became so difficult we stopped flying with her and at the time we made that decision she was flying once a month from Georgia to New Jersey to visit with her father. I know that this decision wound up working for us because her father came to recognize the real peril of her behaviors and the potential for real problems. Now he comes here instead.

I’ve also flown without my children but had other peoples children on the plane. Some of these children were without question disruptive, chaotic, trying. It was mayhem. Do I as a fellow passenger wish that the child would have been more quiet, more under control? Sure! Please – I don’t want 4-5 hours of my own child in chaos let alone one I don’t know. Reality though?? Please. The reality is that with airlines today I’d like to act like some of those kids were. The difference is my decades of additional experience and my brain’s ability to exhibit impulse control. Now take away the decades of experience and the fact that even the most “normal” child has impulse control issues because their brain is not fully formed.

What is it these days where adults are so self-absorbed that they can’t handle some chaos or turn it around and revel in a child who is only acting out like we wish we could? Where is a helping hand to assist a mom who has a child who’s boisterous or fidgety because you have all been waiting on that plane or in the terminal for what seems like forever?

I watched the mom – Janice Farrell calm her son on TV. It’s fairly obvious that she has the ability to control the child given the right environment. Certainly the one described by Ms. Farrell (which you can see by clicking here) was anything but the right environment for a child with any special needs, let alone autism. I am guessing that Ms. Farrell could have done as much to calm her son on this flight had she been met by understanding rather than judgement. The airline – American – released a statement saying

“The child had been crying and screaming uncontrollably, to the point where the child’s well being was in question,” American Airlines, the parent company of American Eagle, said in a statement. “Though, ultimately, the parent’s violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew.”

Ms. Farrell says that she did comply and on that issue all I can say is who knows? I know she says she allowed them to stow the bag. Let me put on the record that I personally don’t believe for a minute that this was the issue. I’m guessing that like many others, that flight attendant wasn’t in the mood to deal with a challenging child. I am guessing that to top the poor attitude that the flight attendant exacerbated an already difficult situation by her lack of understanding how her tugging at the seatbelt and tone of voice were only adding fuel to the fire. I’m guessing that had she been given the opportunity she could have calmed her son just as she did on live tv…..without a bunch of nasty, judgmental people harping on her and her small child. No toddler will do well under those circumstances let alone one that has problems interpreting social signals and sensory input!

The reality is that the airline does need to make sure that it’s safe for everyone to travel however it just seems to me that these things just didn’t happen before 9/11 and now I seem to see them all over the place. Everyone had a little more patience because the whole airport thing was a whole lot less grueling. The reality is at worst I would guess that this child posed a nuisance and a headache factor for some employees and passengers who were either basically intolerant or in a particularly bad mood that day. I get needing to keep people safe from terrorists, not from terrorized 2 year olds. And face it – that child was terrorized. Even if I assume that Ms. Farrell’s view is biased – without question the manner in which we are now required to travel with increased security it torturous for even the most seasoned traveler.

Seems to me that human decency requires some patience with the youngest of us. We need to go back to viewing our world as a larger family of whom we need to be supportive and caring of. Let’s face it….turning the plane around, going back to the gate took as much time as allowing this mother the space to help her child calm down. I don’t know why this woman and her child chose to travel via air. I don’t even care. It seems that disabilities have to be accommodated – and American Airlines blew it on this call not once but twice. Their first opportunity was blown by the flight crew – pilot included. The second was from American corporate who decided than rather to suggest that a policy of Ancora Imparo (thank you Dr. Rick Rader of Exceptional Parent magazine for introducing me to that term) which means ‘I am still learning’ in which maybe they took some accountability for their employees behavior and remembered we all are continually learning and we need to allow new experiences to give us growth rather than duck behind the blame game. What an opportunity they missed by not acknowledging they had something they could learn from this rather than casting blame away from them and their employees.

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