Traveling with the Tiny Titan. Heading to Disneyland

Yesterdays headlines from the New York Post on Manhattan Moms paying to cut lines at Disney World  and a followup on the Huffington post this morning had me thinking. They are scamming the system everyone wrote. They are. But the other thought was that someone with a disability actually had a job which is so often very hard to find in the disability world.

What are the statistics?  In 2011, the employment rate for individuals with disabilities was 32.6 percent. Enough said. Actually that was far better than I see from my walk in the special needs world.  

But moving on. We are headed for Disneyland next week. I am now going to be heading to the theme park not only with seasoned park veteran Becca, but the first time taking McKellan to the noisy, crowded, overstimulating Disneyland.  Why would I do it?  Because it is the thing to do for Miss Becca and a chance for Little Guy to see "his" Jake, Mickey and Car-Car.  When we told Mackie we were going to Disney he ran around the house squealing "Jake", "Car-Car", "Ouse" for ten minutes solid before he fell down from moving so fast running in circles. It's normalcy, it is a chance to go to the places of Magic from the characters that have comforted her and him through their tough day to day existences.

We are also headed for the theme parks in Florida when we head out to attend the Noonan Syndrome and Brave Kids Conference on July 31 to August 4. The article got me thinking ahead on planning ahead and also the "perks" or not so perks of doing Disney, Universal, Sea World with my kids.

I had procrastinated on this one, but life day to day is so full of Doctors appointments, therapies and cares and feeding regimes that I must give myself some slack. Or just maybe, I didn't want to think about what it was going to take until I had to.

First planning ahead is paramount. I need to make a list.

I called Doctor Sheirlie's office to get letters of disabilities for both Becca and McKellan to take to get the Prized "Disability Fast Pass".  No I don't need to go rent a wheelchair for Miss Becca to cheat the system.  Becca has hers. McKellan still is in his stroller, but he fatigues and with his sensory overload with the shade down, hopefully will give him a reprieve from too much. I better not forget his blanket and have him wear his Benik brace for sensory input along with his sunglasses and hat to protect his damaged optic nerves. I won't even go for the challenge to keep them on a tiny 3 year old little one with Fetal Alcohol Syndrome, Autism, and a genetic syndrome.

For our sanity and theirs, we need to cut lines or more appropriately ACCOMMODATION. The disability passes are there for a reason and they are not easy to get. It requires a doctors letter. Despite popular opinion we will still be standing in many lines as they have gotten rid of the line jumping in many places. Which for Becca and my kids can be twice as challenging than for others.   My kids both do not do well waiting. But others will say no kid does.  But my kids have challenges. They both have hypotonia. Standing in one place causes Becca's legs and feet to swell from lymphedema which is incredibly painful. Her lungs only function at 48% of normal due to her Noonan syndrome and muscles with low tone. Her strength is that  of a tiny child. Her heart impaired. Too much anything triggers the always present headaches into full fledged Migraines that will put her into the emergency room.  Mr. McKellan with his autism will flap and squawk when overstimmed and tired. I will be not enjoying myself trying to make sure the needs of my children are met and managed to not spoil our trip to the Magic Parks.

We have flown with both before, and Becca's chair. It may have a small perk.  The article talked about  "A trend, also seen at airports where “travelers request the use of complimentary wheelchairs... as a technique of getting pushed to the front of security lines, only to leap up and sprint to their gates once they have clearance.” 

But has anyone tried to go through the TSA with an young autistic person with a tiny service dog and they targeted and pulled her aside even with all the prompting about her disability?  They wouldn't let me be with her, hold her hand and took her tiny dog away, even though they had been handed the letter from the Doctor, had all the dogs travel papers in advance?  She was standing their shaking and I was almost sure that "This Mom's" scene would have possibly been labeled as not quite socially acceptable as I had to lightly raise my voice. "My daughter has Noonan Syndrome, she is autistic and she is scared". Can't I stand NEAR her to help her through your processes.  She can't get off her braces by herself, you are asking her to do things she can't by herself, her hands do not work, she has Post Traumatic Stress Disorder and Austism and does not like to be touched. Do not put your hands by the insides of her legs you are triggering her abuse history".

Fortunately a Woman Supervisor overheard the stupidity the two TSA workers and took over the situation.
I was handed Becca's dog and I stood next to her while she used the wand to scan Becca. No need to take off her braces.  With an apology that she was randomly pulled aside by being lucky enough to just be the next one pulled we were off to the gate. 

We may have gotten to security ahead of the line, but I am sure by the time we went through 30 minutes of Miss Becca being targeted for being a threat to National Security, we were actually behind them reaching the gate and I got to pick up the pieces of a Traumatized, Scared, Anxious and still tearing up Becca.

Arriving at the gate, they had heard about the fiasco of the girl in the little pink wheelchair and her teeny tiiny service dog and the airline had upgraded her seat to First Class and Morgan had her own first class seat of her own.  The tears turned into smiles. There are still good people in the world who get it.

But speaking of getting on the plane ahead of everyone, but getting off is another story. Ask anyone in a wheelchair. For Becca she has her own chair, she can transfer on herself. But we wait until everyone to get off and then wait for her chair to come up from under the plane. If we don't fly with her chair, we have to wait for the airport transfer crew to get her chair to the gate. Half the time, it is not there when we unboard. Several times, despite having it ordered, it does not arrive until we have to call for it. With the tight times of transfers, we have even had to carry Becca through the airport or miss our connecting flight. Which we have done because of no chair met us.

Special needs kids and special diets, I need to bring our own. We need to bring noise blocking headphones and as always they will tell Becca to take them off while the plane takes off and lands.  She is now trained to "SHOW" them the fact it is not plugged in while I explain that she has "autism and hyperacusis" she hears everything really loud.  She can't talk to anyone when she is anxious due to her expressive language disorder.

Traveling with my kids, no such thing as Medical Confidentiality that the regular world enjoys. I have to just keep thinking that I am raising awareness, educating and advocating for those with special needs.

Are you thinking that my kids are lucky yet?

If with all they deal with, they deserve to have something positive.  A good parking place, a cut in line, or being first for once and being "Special".

To Be Continued
PART II  Traveling with the Tiny Titan







I will continue to blog this week about traveling with the Tiny Titan and her little brother and our adventures of being "lucky" to have a wheelchair or disabled guest pass.









  From a quote from the article, *This might lead to growing acceptance of people with disabilities, because, kids, look how lucky people in wheelchairs are!

She Seems Normal But Can't Do Normal

For those of us with young adults with FASD and other Neurocognitive Challenges the biggest thing is that people do not understand their hidden brain differences.

My friend's daughter who has Noonan Syndrome is just graduating and we have deep conversations of the transition to adulthood will mean for her and the expectations of society. Talking with a friend last week, she told me that a long time co-worker remarked when meeting her daughter "She seems normal" and my friend added "She can't do normal".  As we talked the it was the perfect example of what is so frustrating for us as parents, that people cannot see our children's challenges and executive function deficits.

It is the challenge that haunts our efforts to try to find them any sort of help. No one understands that no matter how much we try to teach, our kids seldom can manage to do things on their own despite IQ's in the normal range.  They just need to try harder.  We just baby them, we just this or we just that.  We are blamed for our kids brain differences and that we didn't teach them to be independent. We are faulted because we cannot heal our children's prefrontal cortexes.

Do you think our kids like having us try over and over and over again teaching them and badgering them to do something that for so many comes simply?  For mine and most of my friends children/young adults they are people pleasers. They want to please. They would do it if they could. They don't want to be seen as slow or "stupid" as Dee often used to call herself. Our kids are blamed because they can't do it independently and they feel different enough already.

Over the years myself and the other parents I know often talk about the frustrations of our kids not getting it, and doing it for themselves. We have tried over and over and over again to find a way for them "to get it". We have tried every chart, reward system, and any other strategy offered by well meaning providers and ones that our parenting guides say we should use to help our kids become more independent.  But to little avail. The only one who learned anything was Mom who learned that they do not work. 

Often we find ourselves lecturing, badgering our kids out of frustration forgetting ourselves that we are expecting them to do things they can't. Sometimes I wonder who has the brain injury, me or them?
We have to be the prompt to remember the prompt and thus adding more work and frustration to our list of daily duties.  We have to prompt our kids to success and if we forget or are tired or back down, we find that they just don't do it no matter how many times we rehearsed the task.

For Detamara and some of my others, they live their lives one moment at a time. They do not plan ahead very often. If they have a mission they can do it, but to do the Activities of Daily Living they struggle. So that in itself causes even more misunderstanding. It they can do it sometimes, they should be able to do it all the time. It is their choosing to not do it leading to the often diagnosis of Oppositional Defiant Disorder or some other label. It is so misleading that these kids can be so compliant sometimes and not others.

They are propped up the the daily structure of the school calender and their families routine and structure. As they age and they are EXPECTED to do it for themselves they begin to flounder. Take away the structure and they can't do normal.

We have provided what they needed to function and as they reach that magic moment of 18 when society expects them to be able to run their own lives.  As that magic age comes closer the parents begin to panic.  The kids have been taught the concrete rules of adulthood and think they can do them. They do not understand that their concrete thinking and their executive function deficits impact daily life and their futures.

How to we protect them and help them make progress?  Interdependence. Because without it they can't live independently and they need us to help continue to be their EXTERNAL brains, prompting them into their young adult lives.

Yurceks in the Media: Little Mac Teaches Family

Here is a copy of the recent article first print in the Grant County Herald, Lancaster, Wisconsin.

Little Mac Teaches Family, The Yurceks Find Joy in Adopting Special Needs Child
April 19, 2013

http://www.swnews4u.com/section/125/article/12480/

FREEBIE: A Daily Guide for Living: Parenting Children Affected by Fetal Alcohol Syndrome

This is a must print or bookmark guide which is FREE
by the British Columbia Ministry for Children and Families

A Daily Guide for Living: Parenting Children Affected by Fetal Alcohol Syndrome

This 72 page FREE resource guide is a great resource for helping us and others understand and help our children. It gives us concrete tools to help our children.

A Lesson from Detamara

Dee has really grown understanding her Fetal Alcohol Spectrum Disorders. She is now 20 and at 17 the Neuropsychological Assessment finally revealed her profound memory disorder. She forgets, she doesn't plan ahead, she couldn't put together what to do.

When Dee said for the longest time "I forgot", in time I realized that she did forget. It took until she was l7 for others to understand that.  When she told me that she was "bored", meant.... she didn't know what to do next!  When she fought me with doing a chore, was not that she didn't want to do it, she was CONFUSED or OVERWHELMED on the project.  Often the answer was "it will take forever".  Which translated into it was too much, too long, and too confusing.  They only way to do it was to support her and encourage her.

We started talking short and often about translating her responses into her understanding that I understood.
In time we began to see progress in those episodes. I have a more compliant, more easily transitioned daughter.

The other day I noticed that she without prompting had taken on the project of cleaning up the long winter of dog droppings inside of the dog pen.  WHAT?  Dee noticed something that needed to be done, and then DID IT!  I praised her for well done project.

I was talking to a friend and told her what Dee had accomplished.  Dee piped up, "Mom you can't expect it from me all the time now. Some days I can and some days I can't."  That day everything connected right and when will it happen again? I do not know. But what I have learned is that I celebrate and empower her when she can and support the rest of the time.

Since that day, I have seen her step out to try more, notice more, and her confidence is building.  It is multi-prong connections that have to be made.

• First, she needs to see what needs to be done or know what needs to be done.
• Second, she has to know the steps to get it done
• Third, she has to be able to have the confidence and stamina to do those steps and brain connections to make it happen. 
• Fourth, through doing these steps she is embedding it into her memory, maybe. 
• Fifth, will she be able to retrieve it when she needs it, or will it imprint?

For her, the simpliest tasks can be so complicated. It took age, maturity and much practicing for us to get to this point. Before now she was not ready. So we just keep practicing, prompting, supporting and encouraging.

She made it through all these steps I am proud..... I am so proud, flabbergasted and shocked.

But also what I learned is that she did it today, but she may not tomorrow.  So today we celebrate,
tomorrow is another day.

Adoption Day 4/16/13 : An Even Dozen. Meet McKellan Edward Yurcek

Meet McKellan Edward Yurcek 

Born: March 2, 2010 

Placed: August 25, 2011

 Adopted: April 16, 2013
 

McKellan has Fetal Alcohol Syndrome, Autism Spectrum Disorder, an Unknown Genetic Defect and just like his sister Becca, he is defying the odds.

 

Adoption Hearing with Doc, Judge Day and Mom at the Grant County Wisconsin Courthouse

Big sisters Detamara, Becca and Auntie Jane waiting outside the courtroom for our turn.

                                         Daddy's Boy

          
                                          Mom and Mackie

We have our even dozen, and by the way they really do not come Cheaper by the Dozen.

But instead come with Blessings by the Dozen.

THEY'RE NOT DONE YET: The Jury is Still Out on Light Drinking Does Not Cause Damage

The internet was buzzing yesterday with the new study out of the UK on light drinking not causing any learning problems for children.  In their study they studied a group of 7 year olds and found there to not be any statistically differences with non-affected peers.  So many news articles citing that light drinking is safe, but every article has a small disclaimer from the original study.

I write my questions and rebuttal to make people and the media think. The headlines are too misleading.

Here is a news article about the subject:

Here is another one which they state the the jury is still out

Where I have questions are and believe that the study and its news coverage is giving a false security?

First and foremost, lighter neurological damage from the effects of prenatal alcohol exposure will probably not become apparent until after at 9 or 10.  Early children are very concrete thinkers, and often children who are on the FASD spectrum will have trouble with abstract thinking.

Yesterday I sat in on a Webinar sponsored by the ARC and done by Kathy Mitchell from The National Organization on Fetal Alcohol Syndrome where she talked about the optimum time to test for FASD's is ages 6 to 12.  So what that means is that until that group of children age we will not know if they have any statistical neurological differences.  They have to wait to see if they begin to fall from being unable to learn abstract learning or have any executive function deficits, or when they don't meet the next several typically developing markers in development.  Until they meet that milestone which happens at ages 9 to 10 and prove that their executive functions are developing appropriately,  we will not be certain they do not have some learning differences.

What this study does tell us, is that light drinking does not cause the most severe learning challenges seen in FASD. But it does not say even from their own quote that they give the GO AHEAD and these children are not affected.

I believe that from what I have read they

QUOTE:   " Kelly stressed, however, that long-term data is still needed. “While we have followed these children for the first seven years of their lives, further research is needed to detect whether any adverse effects of low levels of alcohol consumption in pregnancy emerge later in childhood,” she said.

BINGO.... until later.   Kids with more severe exposures are identified earlier on because of the more severe findings of their FASD.  I have met many a family, child who did not get diagnosed until much later, even after high school when they could not meet expections.

Second, what is light drinking to one person may be more than they think. What are they saying are the perimeters for light drinking?  Drinking till you pass out is binging for some, but for someone light drinking may be more moderate drinking.  What is one drink? a 4 ounce, 8 ounce, 16 ounce, 32 ounce, which kind of liquor?

Third, there are studies going on right now where they study why some children are affected and some aren't. What are the dynamics for who is more at risk for having prenatal alcohol damage?

ARE YOU WILLING TO TAKE THE RISK WITH YOUR CHILD'S LONG TERM ABILITIES?

Little children do things naturally, and until as they develop and these certain areas are keeping up with the typical peers. This group of kids until they are not developing more abstract thinking, and they are not growing and maturing in the areas of processing skills, memory,  following through on instructions more independently, organization, impulse control, learning lags, and will unable to develop or have problems with higher order thinking.

We also have to wait until they hit the plateau and  until they fall from expectations we will know.  Emotional problems develop as they age, little children can throw tantrums, but as they age they should mature out of them. These group of children have not yet gotten to the age where their  emotional and learning differences still stand out.  Also the emotional toll of the stress which disregulates behavior and when they cannot keep up with the expectations that is when the secondary mental health/emotional issues such as depression and other childhood issues begin to appear.

I have seen so many kids not be diagnosed until not just the age 9/10 marker, but the next place where some plateau is at middle school and puberty, the next marker where some fall is at high school when they cannot meet the demands of even higher level thinking.

 For me, my adopted son all who assessed him thought he was spared.  The young star athlete, never a day of special education with typical A, B, C's for grades. A college entrance testing got him into a four year university and he can't manage money, he struggles with too much complexity and depression ensued. He flunked out of school. I was told his genetics prevented him from the prenatal exposures his siblings all have. He was going to be the survivor of the group and the professionals told me to watch him for survivors guilt. I knew he had struggles, he thrived on our direction, he could handle much more than his siblings, but our structure of our family and support gave everyone a false sense of his abilities.   I have a friend whose child got a four year scholarship to a prestigous University with his genius, but he struggled with the executive function and abilities to manage just normal life losing his scholarship.  These kids were diagnosed much later if at all.  All known to have prenatal alcohol exposures.

I cringe when I see reality TV where they talk to Mom's who knew they drank while pregnant and the baby turns out fine.  They see a perfect baby, but will not see the hidden learning difference that may not appear until much later in life.  Then we will also struggle with the fact that they may just have lost a couple of points of IQ, where would that child had landed if the Mother hadn't drank at all.

Until the study is concluded and I pray they follow those children all the way to adulthood and at that point we will be able to really tell if or not they were affected.

My daughter who struggles with the effects of Fetal Alcohol Spectrum Disorders she tells me why would anyone knowingly make her life harder?  For my little Guy will FULL FAS, he will pay a lifetime price.
For my son who everyone thought would skate away and be spared, he wasn't and it was not apparent until age l8, along with so many others I know.

WHY TAKE THE RISK?  Give you child the most advantageous start possible. No amount of Alcohol is Safe.