The ABC's of School With Noonan Syndrome

                   The ABC's of School With Noonan Syndrome
                   By Becca Yurcek

                   Advocate and Attention Problems
                   Behavior = Language
                   Caring Teachers and Friends
                   Dyslexia and Dysgraphia
                   Expressive Language and Executive Function Deficits
                   Fatigue and Fine Motor Problems
                   Gym Class Needs Modification
                   Hypotonia and Hyperacusis
                   IEP and Illness
                   Just Want To Be Included
                   Kids Learn Differently
                   Learning Disorders and Limit Writing
                   Modified Assignments and Maturity Delays
                   Not Going = Not Meeting The Needs
                   Overstimulating Environments
                   Pain Interferes with Learning
                   Questions Answered Verbally
                   Resiliency, Rest and Repetition
                   Social Skills, Scribe and Shut Down
                   Technology and Talents
                   Understanding
                   Victim of Bullying Too Often
                   Writing is Difficult
                   Xtraordinary and Xtra Time
                   Yo Yo Ups and Downs of Living with NS
                   Zero Teasing

                   copyright 8-25-2013

 If a child does not learn the way you teach, 

teach them the way they learn. 

 

                                          

                              Advocate, Adjust, Encourage 

                           Educate About Noonan Syndrome

Ring Around the Medical System

These past couple of years, I have been playing Ring-A-Round the Medical Beaucrasy.  No matter how hard I try I still keep running in circles. As families we are trying to make sure that we do what we are supposed to do to manage our childrens/adults with disabilites care.  I document, fight, and think I have it problem solved only to find it wasn't fixed or another roadblock happens.

I decided to write my frustrations and document my journey to get Becca help.

Becca told us it hurts to eat and "things" are getting stuck behind her sternum in her esophagus.

1. Becca says it hurts to eat and things are getting stuck in her esophagus and its sitting on top of her Nissen fundoplication.
2. I take her to her primary care doctor who puts in a referral for a GI doctor.
3. Called several in network GI providers. 
4. Checked on a Pediatric GI due to Becca's stature.  Denied to see because she is over l8.
5. Referral to out of network provider. The Doctors office put in a Prior Authorization for Out of Network Referral
6. Insurance company denied Out of Network GI Doctor.
7. Appealed insurance company denial.
8. Insurance company approved.
9. The Out of Network GI triage  called said they will decide if they want to see her. They will let me know in 3 to 4 weeks.
10. Out of Network GI triage said they did not feel she needed to be seen. She does not have a GI History is their reasoning. (Becca saw GI for 16 years and had a GI, 2 GI surgeries etc. and l7 years of a gastrostomy tube).
11. Insurance company Out of Network authorization ran out.
12. Reapplied for Prior Authorization Out of Network appointment.
13. Resubmitted information to Out of Network GI.
14. Insurance company denied the Prior Authorization.
15. Wrote a letter and got the insurance company Case Manager involved.
16. Got approval from insurance company to see Out of Network GI.
17. Got a phone call that Becca was scheduled for a scope the next week (without seeing the doctor?)
18. Called the GI office and asked if it is normal to not see the doctor before a procedure.
19. They explained that the Doctor felt this is what needed to be done and they don't always see the 
20. patient first.  I explained that Becca has complex needs including heart problems and  bleeding  disorders and they need to plan to do anything. They haven't even talked to her or us about the problem.
21. The Office called to say they needed proof that our insurance company approved the out of network.
22. Faxed the out of network approval out.
23. Called to double check so can make the appointment.
24. Had to resubmit to see the doctor at the GI triage
25. GI triage had to talk to Becca's primary care provider to see if she still needed to be seen as it was over a year ago.
26. Primary Care Doctor's office resubmitted paperwork
27. Triage Called and scheduled the appointment
28. Called the Health Insurance Company Case Manager to see if the referral is still good. 
29. Resubmit the changed Out of Network Prior Authorization date.
30. Got the Prior Authorization Approval Letter and called to make an appointment with GI triage.
31. Waited 2 weeks for returned call and got an appointment.
32. Got a phone call from reimbursement and had to fax in the Insurance Company approval.
33. Drove in for the appointment 2.5 hours from home. Arrived to find out they had called to move the appointment an hour up and we were now late. (I was already gone when they moved it up). They saw us during the lunch hour and the Doctor kept using foul language.
34. Doctor says she needs a GI scope and needed pre-surgery physical. GI ordered a swallow study.
35. Took Becca to see her Primary Care Doctor for physical and gave them the order for the swallow study.
36. Doctor made recommendations based on bleeding information from her Hematologist in MI.
37. Doctor arranged the swallow study and we got it done.
38. Scheduling called and said that I needed to go to our In-network Hospital for the treatment via IV for the procedure and then be admitted to the other hospital for the scope. I asked why they couldn't just bill Medicaid for the medications etc. They said that if she had Medicaid only they would have to take the Medicaid reimbursement, but not if we had insurance they wouldn't.
    Coordinating two hospitals for the procedure with 1 hour administration of IV antibiotics and platelet transfusions was not feasible
39. Doctor called up to the GI to give recommendations on why you cannot go back her stomach as her risk of duodenal hematoma because of her platelet defect. The doctor refused to admit her overnight per recommendations.
40. Met with Primary Care for Becca's monthly visit and we fired the Out of Network GI.
41. Asked Becca's Adult Congenital Cardiologist in another major hospital system about who should see her.
42. Took recommendations to her primary care doctor. Put in the referral to the Pediatric GI.
43. Put in the Out of Network Prior Authorization for the Pediatric GI.
44. The insurance company miraculously approved it.
45. Put in a referral for the Hematologist who was recommended by Becca's Cardiologist. Saying that Becca needed a medical home with specialists who were in the same system to coordinate her complexities.
46. Submitted the Hematology Referral.  Prior Authorization for an Out of Network Approval to insurance
47. Pediatric GI would not see her due to her age and scheduled her with an Adult GI.
48. Doctors office put in another Out of Network Prior Authorization for the GI in a different department in the major hospital.
49. Insurance company now denied the Prior Authorization.
50. Called the Insurance Company Case Manager but Becca's worker had retired. Had to fill her in on all the troubles we were having with insurance. Told to resubmit and attach the old approval with a letter and the documents on why she needs this.
51. Prior Authorization was approved.
52. Primary Care Clinic called to say it was approved and they made the appointment.
53. Becca finally saw the Adult GI. He ordered us to come back for an Upper GI.
54. Called the clinic to put in a referral and pull the paperwork for the Out of Network Upper GI.
55. Insurance company denied. But with having the denial, the Out of Network Hospital took the Medicaid payment.
56. Test was done.
57. GI Nurse Practioner called to say they found that Becca has a Paraesophageal Hernia and they need to Scope her. But not until she is given clearance from Cardiology and Hematology with their recommendations for treatment.
58. Resubmitted for the Hematology Prior Authorization at the the GI and Becca's heart doctors hospital. 
59. Insurance company denied the Out of Network Hematology consult. Saying she can see in network people. But the hospitals in their network cannot manage her care.
60. Called the Hematologist who the insurance company wanted her to see. His office told us that he was not wanting to continue as her physician as Becca wanted a female.
61. Asked for an Out of Network Referral to the Recommended by her Cardiologist in the same hospital system as the current GI.
62. Clinic put in a Prior Authorization to the insurance company for the Out of Network Hematologist.
63. Insurance Company Denied.
64. Put in an Out of Network Referral to a Out of Network Hematologist who saw Becca 1 time and never let us go back.
65. Insurance Company Denied.
66. Appealed, Denied until I see every Hematologist in the In Network system. Told to go back to the assigned in network Hematologist who did not feel comfortable seeing her.
67. Made an appointment to the First In-Network Hematologist, who was not comfortable with Becca. Argued with him about Becca's bleeding disorder. He says she has "Normal numbers of Platelets" and nothing should be a problem. I handed him the records from the Out of Network Specialists recommendations and her prior Hematologists. Explained that her Platelets do not work and he told me I was wrong. I asked for him to arrange a second opinion and left in tears while Becca made the appointment.
68. Saw the New In-Network Hematologist who got a stack of Hematology records. She had begun to talk about the First In-Network Hematologists recommendation.  I showed her the Platelet Studies from the UW of Michigan before we moved. She then said she was not sure she could handle our daughter's case but wanted to talk with some of her collegues from her training at the UW (Where Becca went once) about bleeding findings in Noonan Syndrome.
69. Waited 6 weeks and then called back to find out if the Doctor was going to be Becca's doctor or not.
70. Doctor called a week later and said that the colleague wanted more testing.
71. Took Becca for more testing.
72. Got the results from Becca's Primary Care Provider which now adds 3 abnormal clotting factors.
73. Called the Hematologist to see if she wants to see Becca or go over the results and whether she wants to be Becca's Hematologist.
74. Still no returned phone call to Mom.
75. Talked to Primary Care to find out what to do with Hematology at an appointment for Becca.
76. Primary Care Provider called and talked to the Hematologist who says that Becca will need Fresh Frozen Plasma, Clotting Factors, DDAVP, Platelets for the procedure and then Amicar every 4 to 6 hours for several days following.
77. Put in a new Prior Authorization for an Out of Network Referral for GI.
78. Put in a Prior Authorization for the Out of Network Referral with the insurance company.
79. Insurance Company Denied.
80. Put in a new Prior Authorization for the Scope.
81. Put in the Insurance Company Prior Authorization for Out of Network
82. Waiting.
83. Received a call from the Hospital GI lab and said that they were reviewing the Hematology notes and will call when they get it all coordinated.
84. Week later received a call from the Hospital GI lab scheduling saying that they will be following the recommendations of Dr. A......  the GI who was fired.  They had been faxed the new Hematologists name and it is in the Epic medical on line system with her hematological diagnoses.   I explained that we fired the doctor and what I was told. Reading her the notes that Becca's primary care doctor had told me would be necessary.
85. The GI Nurse Practioner called and they tell me that they need me to get the New Out of their network Hematologist to fax up the cover page, the detailed recommendations, the diagnoses and all her chart notes from Hematology. I asked just from the second or the records from our two prior hemologists.  All of it.
86. Then she tells me that they will decide at that time whether they will do the scope because she does not have a hematologist in their network.
87. This Mom has had enough, and cries.
88. Becca's primary care provider a family friend called tonight and I explained.
89. Tomorrow we call Hematologists office to get them to fax in the required paperwork.
90. Then wait.
91. Becca's Dad's clinic was bought out, on 10-1 we get a new insurance company and start all over with who they see, and learn a new process and hopefully it is better than our managed care insurance company.
92.  To Be Continued ?????
93. After 3.5 years of us arguing with Miss Becca to get her to eat despite the pain maybe they will finally get to someone to figure out what to do to help her pain with eating and her esophageal hernia.  

See It, Write It, Remember It. TEXTING TO SUCCESS with FASD

With my kids with organic brain damage from their prenatal exposures along with all the other alphabet soup of diagnoses, I have learned that they learn better by seeing what they need to do. 

Many of our kids can have normal IQ's and can handle more concrete learning information.  Often they do well early in their school years on when the information is presented in a CONCRETE easily understood format.

God gave me the gift of understanding that my children use visual memory much better than any other medium of getting things to stick. They can remember vividly what someone was wearing, what they did, and all sorts of information from an event. But cannot remember some of the simplest other things.

Think in the terms of a camera. They can capture the images they see, but they can't see themselves so they never know what they did.  (Another blog post for another day).  But what that taught me was to help them see just like they now are teaching in autism with picture prompts etc.  I used simple notes, cannot be too complex or they shut down and are overwhelmed.  Short and sweet, concrete and to the point.

For years I have been teaching teachers, principals and anyone who works with my kids if they want them to remember something they need to TALK LESS and use a simple bullet reflection system to help them see and retain the information into their memory.  Talking to my kids the message becomes jumbled and often lost in translation as it processes through their damaged brains.

My house became a series of notes put up as reminders. There were times even though still needed the kids removed them as they didn't want to be treated differently or have their friends see anything that will get them noticed for being a different.



Often kids/adults with FASD have auditory processing disorders. But in our world and society we talk too much. When I talk to my kids with FASD I have to talk simply, with three or four words with a slight pause which allows their brains time to process the information that I give them.  Then double check for understanding.


If I wanted my child to bring me or put something away right I would use a post it note reminder. Go get me french fries from the freezer.  I had to do something as too many times they got to the freezer and brought in corn instead of peas. or whatever and it ended it in my frustration and their feeling bad that they got it wrong.

I know that my adult kids can remember what they receive via text message, what took me so long to get on the text to remember kick?

Becca and Dee have been texting each other room to room. They were texting in the same room the other day. I wondered why?  Becca figured out Dee understood instructions better texted than communicated. It took Becca with her Autism and understanding of not hearing what is being said in a room full of too much noise for her to know what to do to help Dee understand instructions.

I was talking with a friend lately and talking about we talk to much. She has been emailing her daughter with discussions instead of deep conversations and they seemed to make a difference in her understanding and her remembering.

LIGHTBULB moment:  With our teens and young adults we need to use their mediums to help them.

I just tried an experiment. I texted Dee up in her room and asked her if she could please make Mac a bottle.  I received a reply, I am all the way up here!  I texted back that I was writing and I would really appreciate her helping me. Okaaaay.

 Normally anything you tell Dee needs many steps going like this.
1. Ask her to do a simple chore.
2. Wait 3-5 minutes to see if it processes and is understood by asking the question again.
3. Now wait 3-5 minutes to see if she responds.
4. Carefully prompt her again if not moving.
5. Double check for understanding.

To make the said bottle would require me to have 15 to20 minutes of intervention. Not because she is being oppositional like so many would think. It was just because it would take that much intervention and complex processing for her to be able to hear it, transition, and get moving.

The bottle arrived in less than 5 minutes.

Want something done, want them to remember, quit talking so much and put it in writing.

TEXT to SUCCESS.  But first sign up for UNLIMITED TEXTING.

Upcoming Webinars from the North American Council on Adoptable Children

 
 
I got an email I found on a group for parenting foster and adopted children about some upcoming Webinars that look very interesting and presented by those who walk the walk.

I am posting them as they look amazing. I know of the parent who is doing the Parenting Children who have been prenatally exposed. She is phenomenal and it will be worth the $20.  I will be attending and getting some training hours as they provide a certificate for attending.

http://www.nacac.org/conference/trainingwebinars.html
North American Council on Adoptable Children
Webinars

NACAC has scheduled a series of webinars on a variety of topics. Each session below is taught by experienced individuals who are all adoption professionals and adoptive parents. Each is an acclaimed speaker who has received rave reviews at the NACAC conference and other speaking venues around the U.S. and Canada.

Fees for each webinar are $15 for NACAC members and $20 for non-members. Fees are non-refundable. To learn more about membership, visit http://www.nacac.org/about/membership.html.

Parenting Children Who Have Been Prenatally Exposed ­ by Kari Fletcher ­ Tuesday, May 21 (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain) ­

Understanding The Acting-Out Behavior of Your Adopted Children ­ by Maris Blechner ­ Tuesday, June 18 (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain)

Helping Children Heal from Trauma: What Parents and Caregivers Need to Know ­ by Sue Badeau ­ Thursday, July 18 at (8 pm eastern, 7 pm central, 5 pm pacific, 6 pm mountain) ­

If you cannot attend the session in person, you can still register and receive a recorded version of the session after it's over. Certificates of attendance will be available for those who need proof of training hours.

Click here to register for one or more of the webinars

North American Council on Adoptable Children (NACAC)
970 Raymond Avenue, Suite 106
St. Paul, MN 55114
phone: 651-644-3036
fax: 651-644-9848
e-mail: info@nacac.org

Traveling with the Tiny Titans. Planning and Strategizing for Flying with McKellan and his FAS and Autism

With all the talk of Disney and Disabilities it reminded me that I need to get moving and planning for our adventure to California next Wednesday.  I had procrastinated long enough that I needed to get myself moving and planning.

We have traveled with Becca and I have that down to a science and she is a seasoned traveler.  But we have traveled with McKellan before he was an immobile baby and he was because of his delays easy to manage.  But with him now being a mobile, very independent 3 year old who is very much two this time will be another story.

I asked for help from his Occupational therapist and today his Speech teacher came back with ideas from the team.  There thoughts just confirmed what I was thinking about, but what we realized is that he needs boundaries to stay put. If he has them he can do well.

I forgot that I was going to order an Airplane Toddler Harness that I saw in my parents magazine. Oops!! I told the teacher that I needed it pronto and hoped that Amazon had it so I can get it here FAST!

Mackie is into airplanes after visiting Grandpa at the airplane hanger. He was so excited when we picked Ian up at the airport recently. I decided that he needs some airplane books to go through the process and also to entertain him on the trip.

 I ordered these two. One a doubles as a color book and the other one which talks about the airports.

I need to remember his crayon roll-up to use with his airplane color book. I made this Crayon-Roll Up for Mackie and have posted the instructions for making your own on my Thirteen and Frugal blog.

Stroller and car seat will be flying with. We have to bring HIS car seat. When he goes into unfamiliar settings he will not drink his bottle until he gets accustomed to it. When all else fails, when we are out, we head to the car and give him his bottle.

When things are too much, he settles down when we put him in HIS Red Maclaren stroller with his blanket. Next on the packing list: His noise blocking headphones, his blanket, snacks, drink bottle, chewy tools, IPAD with loaded movies is going to be our lifesaver.

I need all of his sensory tools, like his Benik Brace which provides feedback so he can handle outside the house activities and he doesn't flap and squawk nearly as much. We will put it on right when we get to the airport and for the plane.

Mackie pats on his chest when he gets disregulated and will get excited at the sight of his Benik. It works like magic for him to get regulated and get strong feedback.

Today his Speech Therapist expanded our "How Does Your Engine Run" toddler programming with the addition of Speech Communication and today we introduced it on the Ipad.  I am so excited that the Alexicon AAC  has a page of Sensory Tools and he can identify and ask for what he needs hopefully ending much frustration.

I will be loading it on Ipod Touch that we have bought just for his Communication. He is too proficient and knows how to navigate his Ipad too well to use the same device for both.  I am excited to use it to help him not squeal for what he wants on this trip which will save the other travelers ear drums and my nerves.

Enough planning for today.  Everything is ordered. I have made my list.

Car Seat
Stroller
Airplane Harness
Benik Brace
Blanket
Ipad
Ipod  Touch Communication Device
Snacks
Drink Bottle
Bottles and Formula
Chewy tools
Books and colors

And if all the other things fail to handle his sensory issues.  The NEVER FAIL, just flip him upside down and it resets his mood!

Follow our Traveling with The Tiny Titan Adventures to be Continued.
Part III Continued 

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.