thespecialparent.comSpecial People Parenting Special Kids

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.

If you enjoyed this post, make sure you subscribe to my RSS feed!

I was checking in on some of my favorite blogs today in my spare time (yea right) and found this clever tip that I just had to share with all of you.

I thought this was a brilliant idea to give visual cues to our kids on changes in routine! Why didn’t I think of this!!?? Please take a moment to click here and read this short but clever idea!

If you enjoyed this post, make sure you subscribe to my RSS feed!

I came across this on one of my listserv’s and thought it was useful information for some of you.

Hello, my name is Maria Dellapina and I am writing to inform you about an opportunity to enhance the lives of the children we spend our lives advocating for.

I am a mother of an nine-year-old daughter with Down Syndrome and have
struggled through out her life to fit her properly in eyewear. Being an
optician for over 25 years, I was constantly searching for frames that fit
her unique needs. After realizing early on that I was fighting a losing
battle, I took it upon myself and my experience as an optician, to design
and create a special line of frames that dramatically enhances her abilities
to function in eyeglasses.

I am proud to say that recently I was able to partner with a manufacturer
who has developed my design into a workable frame for children with DS and
other special needs. SPECS4US Inc., Superior Precision Eyewear for Children
who are Special, is my vision to bring specially formated frames to enhance
the life of not only my daughter, but the lives of all the special children
struggling with this problem every day.

I have fitted a dozens of children in the frames, and have seen tremendous
improvement in the lives of all of them. Parents are e-mailing and calling
me to express their gratitude for enhancing the quality of their children’s
vision and ultimately their day-to-day lives.

As I am only one mother attempting to advocate for such a large community, I
would appreciate your help in spreading the word to those I might not be
able to reach. If your organization produces a newsletter or maintains a
website, I would like to ask your support in publishing the following
information below to reach your community.

If you would like to speak with me directly, have any further questions or
would like a sample article ready for print, please feel free to call me at
1-800-586-1885 or email me at info@specs4us.com. Please check out my webpage
www.specs4us.com, to learn more about my cause. Thank you in advance for
your time and support.

Sincerely,

Maria Dellapina

Founder SPECS4US Inc.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Well I missed the interview in the summer chaos that is our home but found a write up on it on the Good Morning America/ABC News website. Jenny McCarthy and Jim Carrey were interviewed on Wednesday’s show before they took to the streets of Washington DC to March on Washington with several thousand supporters to ask for support in both “greening” vaccines as well as reviewing the current vaccine schedule for children.

Let me make it very clear from the outset, popular or not, I am vehemently opposed to those who feel that the potential for autism is justification for withholding any and all vaccines from their children. I feel it is irresponsible parenting and irresponsible citizenship. I’d rather have my child here and autistic than dead from pertussis or measles or mumps or any of the other things vaccines protect our children and the population as a whole from. I am sure at this point some of you are saying but you just don’t understand what having an autistic child is like!!! You’d be right. I don’t know the full weight of it. I do know the behavioral aspect of it pretty sufficiently even if Katherine isn’t autistic. I wouldn’t wish autism or it’s devastating effects on any child or their family. I do not believe however that the scientific evidence currently shows conclusively that vaccines are the cause of autism. I do however believe that there are certain correlations that need far more investigation than they have gotten. I also believe that you can’t have the group that says to you “vaccines are good, and important” (CDC) being the ones responsible for investigating if maybe they were wrong….maybe something was missed….obviously the problem is not global but SOME kids may very well be having reactions to the vaccines. What makes those kids different from the ones that do? It’s sure as heck worth investigating further.

The argument that I felt particularly compelling from this march was the schedule of vaccinations. The basics of the proposal seem to be that rather than skipping immunizations that in addition to removing the remaining thimerosal from the vaccines and extending the vaccination schedule so children and their small bodies are given additional time in between vaccinations to recover and regain strength so that their immune system is ready to fight with the next vaccination. Maybe it won’t do any good – and I am not a doctor – but the benefits of investigating this as a possible method to understanding if the vaccination schedule has some relationship to the increase in autism certainly seems reasonable and responsible.

My son is 2 3/4 years old. Our family is blessed. My son is in the 149 out of 150 who has not developed autism. I know that when he was an infant though I prayed after every vaccination. I know that Katherine had seizures a couple of times when the vaccination spiked a fever. I can’t imagine what it would be to give a vaccine and to “lose” the child you had once known to something like autism. I couldn’t imagine that any more than someone could imagine what it is like to have someone tell you that your child has had a massive stroke and may never walk or talk. You just can’t know unless you’ve experienced it first hand. He had the same vaccines. What is the difference between him and my friend’s son who was diagnosed with Aspergers? Who knows?? Certainly not the medical profession.

I can’t help but feel that for a condition which everyone seems to agree affects approximately 1 in 150 children that more people in the medical community aren’t alarmed and aggressively pursuing answers, treatments and better yet, cures? It certainly seems that none of the suggestions I’ve heard or read about from this Green the Vaccine March would be irresponsible.

I am surprised at how little coverage this March seems to have gotten. There has been speculation that there has been pressure brought to bear on the networks and other news outlets to overlook covering this event because of some fear that it would lead to widespread vaccination moratoriums by panic stricken parents. I hope to heavens sake that I am just naive in thinking that we still enjoy freedom of the press. It seems to me that anyone who actually thinks that withholding information in that manner or being unwilling to engage in debate and discussion would think that a parent wouldn’t view that with the very real suspicion it deserves. I never met a topic that couldn’t benefit from healthy, respectful debate. Respectful of course being the operative word. You don’t have to like a persons position to be respectful that there is someone who has an opinion other than your own

The reality is we have far too many children suffering and there must be a reason. It’s imperative that the debate keeps autism in front of people so that we can continue to push for research and answers. Unfortunately, children are not voters. We need to remind those in power that for every child with autism there is a mother, a father, a grandmother, a grandfather, an aunt, an uncle, a cousin and on and on who will vote on their behalf. We are our children’s best advocates. Whether you subscribe to one side of the debate or the other everyone can agree that answers need to be found and found now.

Thanks to TACA (Talk About Curing Autism), The Huffington Post, and Barbara Fischkin at the Huffington Post

If you enjoyed this post, make sure you subscribe to my RSS feed!

I can’t believe that time has gone by this quickly. Today is the second day of summer vacation in Georgia. I remember the good ole days when summer didn’t actually start until almost July…..of course then we didn’t start school until after Labor Day in September. But it’s just a different span until the kids go back to school. So for now I dream of August 4th and pray for the strength to make it thru the looooooong HOTlanta summer.

For a number of years Katherine was in what is typically referred to as Extended School Year (ESY). Basically its summer school. Not the kind of summer school you are thinking of where you’re being punished for failing a class (or more) during the regular school year. Really this extended school year is for special kids who would otherwise lose significant ground academically, socially, emotionally by being out of school for too long a period. While it is almost more loosely run than the typical school year so that students are having more of a summer camp experience than just sitting in a classroom. It can be a really great experience for the kids as well as serving an incredibly important purpose – keeping our kids in the groove schedule wise (incredibly important for so many special kids who need structure to maintain) as well as giving our children the continual reinforcement of academic goals and objectives. Usually these are the same ones that are included in the IEP during the regular school year or several that are picked for focus during the shorter summer program.

For years this has been something we felt was critical in maintaining Katherine – to a great degree I still believe it’s important. However this year her dad, stepdad, therapist and I all decided to opt for keeping Katherine at home during the summer. We have put a great deal of effort into preparing her for the transition to high school. There were a number of things about how summer school was going to be run this year that made us feel it might be working against all we had started up with the high school planning. I did alot of thinking about well if not in ESY what would we do?? Sitting at home watching TV just was NOT what I had in mind for summer vacation. With my current condition, going to the pool every day isn’t an option either. So what could I do to allow for some fun while doing our own “ESY” program at home.

We started to think about the life skills that we’ve been working on during the school year and the skills she most definitely needs remedial work on as well as what things I could reasonably accomplish at home without driving us both to drink (keeping in mind that in some ways she is still a typical teen and I am “just” a mom). So it occurred to me that some of you with teens who are going to need to work on independent living skills might want to think about doing some of these things as well. Maybe you’re lucky enough your kid knows these things already and if so could you send them to my house

• laundry – separating clothing into color groups (white, light, dark) detergent, fabric softener, bleach, reading care labels on clothing and using the washer and dryer. Folding clothing and hanging up items is something she already does
• meal planning – if Katherine had her way breakfast lunch and dinner would consist of pasta, pasta and pasta. Oh and drinks – LOTS of drinks. So we are going to work at planning every meal for the family for a week and what we have in the house to achieve those meals as well as putting together a grocery list for what will be needed to make those meals. We’ll incorporate looking at the weekly grocery store sales and what can we have for a meal that might be on sale.
• Grocery shopping – yes she’s been with me a thousand times and even helps me find things. But now we’re going to work on shopping for ONLY what is on the list (not the thousands of items put at every corner to tempt you to purchase something you don’t have the money for) and learning about things like expiration dates, how to read pricing on items, determining how much of an item is in a package. Of course this is years of teaching but we’ll start out with a few items and go slowly.
• Job applications – they have started working at school on filling out forms but honestly they are pretty simple. I’ve started to gather a few different forms that local companies that Katherine could reasonably approach about employment would have so if it’s not information she already knows (name, address, phone number, etc.) it’s something we can start working on now.
• Money, Money, Money – it’s one of her biggest downfalls – what things cost and the fact that just because we want it doesn’t mean she can afford it (and I know that’s 3/4 of the American population but I’m not taking on credit card debt theory this year) Also in this realm will be knowing if you got the correct change when you paid for something because unfortunately you can’t count on the person at the register to get it right, or worse yet be honest. We’ll also go into the bank to make deposits rather than my usual run through the ATM machine so she is being met and meeting people who she needs to interact with in the community.
• Personal grooming – for better or worse I do not have the typical female teen. She is less than careful about her appearance. Whether we like it or not, people judge you by your appearance in some way, shape or form. So this summer is about hair care (brushing, washing), face care (washing and those Brooke Shields eyebrows) and dressing appropriately which includes not only matching the clothing up in outfits that are coordinated but that once we have them on are we looking at if the shirt is pulled down, pants pulled up and how the whole head to toe look has come together.

While these are things we are working on I don’t have any belief we’ll hit perfection we have to start somewhere. These are all skills that she will need for the rest of her life and they will be working on many of them in school next year so no time like the present to get a head start. What kind of things are you working on with your kids that maybe others could be thinking about. I’m certain my list is far from inclusive on all the various skills our children need to work on. Share!

If you enjoyed this post, make sure you subscribe to my RSS feed!