Master Parent

It's back to school time for both of my children and you know what that means.

Yep, time to fill out the dreaded emergency contact forms.

Who designed these things anyway?

Not someone wearing glasses, that's for sure.

And most definitely not a parent of a child diagnosed with special needs.

I sit at the kitchen counter, pen poised, ready to fulfill my obligation as a good parent.

I feel a wave of familiar nervousness. My stomach tightens as I am reminded of my own high school days and the nauseating feeling of complying with authority.

The lengthy form begins by asking me the basics....name, address, phone number?

OK, easy enough, I feel encouraged as I breeze through the top portion of the page.

The next section is always tricky for me, it asks,

Mother's Occupation?

After this question there is a very short line for a Mom to add things like: chef, president, nurse or technician.

I laugh to myself as I wonder, how on earth do I describe what I do for my child in a line that is this____________ long?

The emergency trips to hospitals and specialists, the combat negotiations with schools and insurance companies, the threading of feeding tubes, the passing of seizures, the nightly injections?

"Stay-at-home-mother" just doesn't seem to cut it.

OK, so I will admit it, I have a defiant side, and that willful part of me is eager to exert itself.

So, I enter in the shorten space......."master" parent.

I figure that "master" is a phrase that is used quite often in the working world. It is used to describe someone with many years of service and an abundance of relevant experience in their field.

We have "master' electricians, "master" carpenters and "master" chefs.....I figure "master" parent is a pretty good description of the quality of service I provide to my children on a daily basis.

OK on to the next section:

List of medications?

After this question is a line as short as the first one.

How on earth am I going to enter all of Nick's medications on a line that is this______long?

I enter "see back" and list the long line of supplements, vitamins, injections and medication.

Next question?

Hospital to transport to?

And of course, another short line.

How on earth do I explain in a line that is this ______long that if it is an emergency he must be transported to the nearest hospital, it if is not he is to be transported to Boston. How do I tell them what to do if he is having a seizure or if he loses alot of blood? How do I explain his risk of stomach rupture?

I enter my standard stock answer of "see back"

Next question?

Name of physician?

Since Nicholas sees about 12 different specialists, which name and number do I provide in the line that is this_____ long?

Once again "see back"

I fill out the final section of the form with emergency contacts and corresponding cell phone, business phone and home phone numbers.

My form is littered with writing. It has taken me 45 minutes to complete and I still do not have a good feeling that I have provided the school with enough information in case my child has an emergency. But I am happy the painful process is over and I smile as I sign the form...

"Lisa Peters, Master Parent"

That is until I realize........I need to complete another form for Weston.

Move over June Lockhart

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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com. Please feel free to come visit us.

Recognition Among the Typical

My daughter is 11 and has just entered 6th grade. Last year at the end of 5th grade we got the incredible news that she was selected as a Board Scholar in our school representing the district in Georgia.

The Elementary Board Scholars program began in 1983 as an initiative to promote outstanding academic achievement among elementary school students at a time when elementary schools in DeKalb were comprised of kindergarten through seventh grade. At that time, Board members at wanted to have a way to honor young academic achievers in a manner similar to the honors program in place for high school students. The concept of the program was originated by longtime board member Elizabeth Andrews who passed away in 2008. The program now celebrates the work of the top six students from the highest grade-level at each DeKalb elementary school. Board Scholars are selected on the basis of test scores, an essay and an interview. (2010) 

The thing about the program that I had witnessed over the years is that kids at this school was that the kids who were named Board Scholars had academic achievement - "on the basis on test scores" - and those that weren't served mightily by the special education department.

Kids served by the special education department weren't usually recognized beyond "Most Improved" (which she was also awarded, so you can imagine the confusion for some parents) and so, we were as shocked as we were proud. My girl worked really hard to achieve what she did...and it showed in her test scores from the beginning of the year to the end. She is what most would consider a special education success.

So often kids like my daughter and her brother are overlooked for mainstream recognition and I was really touched that our school didn't let her special education status hold her back from the "typical" award. By scores alone she wouldn't have ranked high enough to get this award but based on an interview and an essay (that she probably worked on with her special education teacher) and most likely her attitude to reach her goals. I wish all kids had an environment that nurtured them in a way that celebrated how far they've come, and how hard they tried, using only themselves and their progress in the grading equation.

I'm sure parents in our school were surprised she was chosen, but I'm so happy they witnessed an untypical kid getting typical recognition. She wasn't segmented out from the others and honestly, that is beyond what we could hope for in the past.

Maybe things are changing in the disability world, ever so slowly.

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Julia Roberts lives in Atlanta, Georgia with her husband and two kids. The kids have had kidney transplants, will require liver transplants one day and have learning disabilities and mental illness. She blogs at Kidneys and Eyes and is the co-founder of Support for Special Needs. 

Like an Idiot

Look up "idiot" in the dictionary, and you will see that it is a word used to describe someone with an intellectual disability, the R-word, if you will. We, as a culture, think nothing of throwing this word around, calling other people that in a disparaging way, telling stories on ourselves in all the ways we act and look like an "idiot," and using it in everyday conversation.

I wish I had a nickel for each time I've heard someone say, "He looked/talked to me like I was an idiot." I'd take all those millions of nickels and start an aggressive campaign to end the ignorance (which refers to someone that simply doesn't know, not someone that is "stupid").

Let's break that apart: One could assume that the person saying such a thing thinks only idiots deserve to be spoken to or looked at in a way a person of normal, or please, Lord, above normal, intelligence should be looked/spoken to.

One could assume that being an "idiot"is a terrible thing to be, and therefore any insinuation that one is such a thing, is a huge insult.

One could assume because true idiots aren't capable of understanding the simplest of things, they belong in a sub-human category, undeserving of respect.

It may seem like a small thing to most people - word choice - but it's not. What we say reflects what we think. We, as a culture, have to think differently. We need to choose our words carefully. We need to at least show respect, even if we can't quite get ourselves to a place where we internalize and feel nothing but compassion for all sentient beings.

His Holiness the Dalai Lama says, "There is compassion, and there is everything else." I believe there are people that operate from a place of worthiness, their own, and the inherent worthiness of others, all deserving of compassion.

And then there's everyone else.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

PTSD impact

I am the first person to admit when we began our adoption journey that we knew we were not going to get healthy kids.

It was drilled in us from the minute we walked in the door of our agencies until the minute we graduated the programs.

I will also be the first one to say that I knew my kids were broken and that we would continually have to pay for their bio-families sins.  Over and over and over.

But on some level I had really hoped that after a a few years things would settle down and the kids would start to acclimate and with plenty of love, firm boundaries, good doctors, that things would start to stabilize.

But sometimes it isn't that simple.  Sometimes the price and toll that the past brings is high.  And as we have danced so we must pay the piper.

It started last year.  Marvin was a kindergartner.  All through the year Marvin had panic attacks. He hid his school work, ashamed of backwards numbers and letters.  Little things like landing on yellow would have him crying for hours.  His teacher was great.  But I started to notice a pattern.  He had had these same problems in his preschool.  And I was the teacher!

People had assured me that once he was in a different school things would calm down.  And they did, but only for a while.  You see, you can put a band aid on a gaping wound and all you have done is bought time.  The wound is still there.

So things just kept getting worse and Marvin kept going up and down like a yo yo.  He was triggering right left and sideways.  So I started to get pretty worried and scared.  I placed a call to Children's Home Society.  I was kind of grasping at straws at this point.  But since they had always told me that they were there to help I took it.  And I'm glad I did.

Before we knew it we had an appointment with a therapist who specializes in trauma and abuse.  If any kid has ever gone through that it is Marvin.  He is great.  But he will not hold your hand and sing love songs.  He is a tell it like it is guy.  And the picture he painted of what happened was grim.

Marvin came in with us the second meeting and the good doctor had him at the heart of his issues pretty quickly.  He also gave us new labels for Marvin.

The long and short of it is that Marvin, like most severely abused kids needs control in a situation.  He is hyper vigilant and has difficulty feeling safe.  Since Cary Lynn came the little control he thought he had has disappeared.  He loves his sister but feels he must protect her and care for her.  He assumes a parent protector role.  When he should just be a kid.  Marvin was diagnosed with Post Traumatic Stress Disorder, Anxiety Disorder, ADHD due to his brain trauma, and dyslexia.  Wow.  It was quite a lot to take in.

The things that haunt me are Marvin sitting in the office and telling the doctor that we will send him away if he is bad enough.  Talk about ripping out a mother's heart and stomping on it.  And the words"You know she beat the crap out of him.  The last time she was just caught."   I thought I was going to be sick.

So what do you do.  Well I had about two choices.  Die or fight.  Guess what?  I don't die to damn easily.

So what now?  Well we start with fixing Marvin.  In between all of this a trip to the GI doctor told us that he has damaged his IT tract by holding.  It will take a year to fix his poor body and we are on massive doses of laxatives to retrain him to do what he should have been doing.  But really when your life spins out of control the only thing Marvin could control is his toileting so he stopped going.  So this is another area he no longer has control over and he is not happy about it.

We also are going to get a massive amount of educational testing done on him.  We have to bring proof of his learning disorders to get the help he needs in his school.  We are going in for the mac daddy of all tests with a top doctor who understands Shaken Baby and meth kids.  He is like the holy grail of testers.  Marvin also is in therapy to help him work through this.  We also are learning to re-parent him,

The good news is that with help and lots of support Marvin CAN be successful.  He can learn.  He can grow up, get a job, get married and give me lots of grand babies.

The bad news.  It involves fighting for it all.  It involved endless meetings with his school to get him help and support.  We sat down for the first one and it went well, but it is a process.  There will be tons of trial and lots of error.  Plus his poor new teacher looks like she has been hit with a mac truck.  I know she can do this.  I have faith in her and think she is lovely.  But it is a lot that I am pretty sure she didn't sign on for.  Marvin will challenge everything she has ever learned about kids and turn it on it's head.

It's also a process for us.  All the great ideas people have given me have only put a band aid on Marvin's issues.  Now I have to do things differently and people may not always understand why I have to do things that way.  Plus there are those who don't want to hear that there are things wrong with Marvin.  When I need to talk about it I get the feeling they are shutting me out or just thinking, there is that crazy psycho mom going on again.  Can't she just get over it.

But I can't.  I have to live it day to day.  We do our best and sometimes better.  Marvin is a fantastic kid.  There is no one like him.  He is funny, bouncy, and can charm the socks off of you.  He is also the victim of unspeakable abuse and horror.  But he has done something amazing.  He has lived.  He has survived.  And he has walked through hell and come out of it.  Not unscarred, but still he has come out.  So many haven't.  It is up to us to help him learn that he is safe, he can learn.  I have my work cut out for me, but I am ready.  I am ready to stand up for him.  To speak up for his needs.  To tell you that my child has the right to grow, learn, and flourish.

I am ready,  The question is:  Are you ready for me?

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Amy Fields is a wife, mother and advocate for her two special needs kids.  You can read about her adventures at her blog Many Kinds of Families.

Moving on....

The inside of our house is getting a much needed coat of paint. I wish we didn't have to do it, as the smell is awful and all I can think of is the amount of toxins that we are breathing in. The windows are wide open day and night and thankfully the team who are working here are lightening fast.

Another downfall with the whole process is that the painters have emptied out my cupboards. This doesn't bode well, as each space is (was) jammed pack full of dusty old files, papers and books. How is it possible to accumulate so much *stuff*? 

So there I was, staring at the pile that was getting bigger and bigger and I thought to myself... right, let's do this thing, this is a great opportunity to declutter!

The first bunch of papers revealed a photo that was taken on my 40th Birthday (I am nearly 50!). Following close behind were a few primary school reports for my first born. I disposed of some old receipts relating to purchases from long ago. Then I picked up a lone piece of paper. It was actually an old fax, all dirty and worn. The print had faded in some places and a few of the words were unreadable.

I read the final line.... then looked at the date. December 2000. My second son (Nick), only 18 months of age. Ouch, that hurt.

Moving on, I came across Nick's work files. Years and years of written records, check lists, tick boxes, reams of paper telling his story and academic progress (or lack thereof). Why oh why have I been keeping all of this? Is it a betrayal of sorts to dump the lot? Would Nick feel that I am throwing away memories, a large part of his life that was? The dilemma of what to do sits within me.......

I find stacks of notes relating to conferences past, workshops attended and bucket loads of various odds and sods of information that I have gathered over the years. Newspaper articles all brown and crinkly. Beautiful children gracing the covers of Time Magazine and the like. Catalogs for books, AAC devices, PECS and advertisements for a million zillion toys that I *think* will make the difference! Do I need all of this crap? Seriously, who is going to want to look at it? Do I need the continuous reminder of all that hard work that Nick has put in? I am no longer in a dilemma. It's time to dump the lot.

I grab some black bags and start going through the stacks, bit by bit, pausing every now and then to look at what I have in my hands. At times I find an old forgotten assessment or report ~ those I put aside in order to file away under important papers! It is a time consuming job and I quickly tire of rifling through sad memories. It is all too much and I don't have any more energy for sentimentality. I don't bother going through what is left, I just pick it all up and stuff it into the bags. Be gone.

Bright Side of Life

1 September

I have just thrown out over twelve years worth of autism information. ABA files, TEACCH, PECS, newspaper articles, conference papers, magazines, worksheets, O.T. info, anything and everything.... except for assessments and reports.#movingon

All that I have left is the photo above. I feel rather indifferent about the whole exercise; and I am fairly sure that I won't need to repeat the experience in 12 years time.

Oh, hang on a minute... I still have a room full of toys!

Moving on....

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Di writes about autism and day to day stuff over at the Bright Side of life.

Looking ahead

DH and I are driving back from a naturopath whom we have visited for Crohn’s disease

He tries to explain what may  have caused Crohn’s. He tells us that maybe it’s the lack of sun in the Temperate zone that a hurts a child of Asian origin.

Then he adds that another cause could be unusual bacteria in the tropical zones (since we visit India every couple of years) that is may have caused Crohn’s.

We are shaking our heads about it in the car.

Which is it? 

Should we have not moved to a temperate zone? 

Or should we have stayed in the temperate zone and never visited the tropical zone?

As it turns out that – that just like Autism, for Crohns too – no one knows anything definitively.

There are many plausible and contradictory theories and there is plenty of fodder for parents to torture themselves over what they could have done to prevent it.

If it were not for my years of Autism parenting, this conversation would have set me on a tail spin of guilt.

But, Autism has taught me that obsessing about causes and your role in those causes is toxic.

Much better to spend your energy thinking about what helps and what heals.

It’s not that different to when other  bad things that happen.

We always ask- why me? We obsess on reconstructing that event in a way that could have prevented it.

People who have been in car accidents, go over and over again all the ways in which they could have been prevented – if they had just left the house a little later, decided not to go to that grocery store that day, lingered a little longer or little lesser over coffee that morning.

An aunt with the hip fracture obsesses, if she had only seen the slick of water, bought those non-slip slippers, eaten that calcium etc.

But there are no do-overs in life.

Bad things happen and they can happen any time.

We can eat the calcium, the purified omega 3’s, the folic acids and the organic food, look both sides of the road while crossing and get all our annual  checkups and it is very  good for us but its never a guarantee!

Don’t look back. 

Don't ask why me

Don't even ask why 

Ask only what now

And look ahead for this life is no dress rehearsal

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K writes about love, life and autism at Floortime Mama.

Why Family History is Important

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A new website “Genes in Life” was just launched and answers the question “How do my genes affect my life?”  There’s great information on genetic testing and what it means for families. 

 

 

 

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As you may know from past posts, my daughter has multiple disabilities.  She was born with a rare kidney disorder which we literally found out on day one, and even though genetic testing was negative, we were told to mention to our siblings when they started their families.

 

 

Fast forward to age 7 when she was diagnosed with autism, which was much rarer then than it is now.  She had been homebound as medically fragile but once in a school environment had behavioral issues.   My gut told me something else was going on which was immediately confirmed by Children’s Hospital.  She was tested for Fragile X, which was also negative, but I also thought this may be genetic.  Due to already having both kidney disease and now autism, that made our decision not to have any more children final. 

 Fast forward again to the present.  Stephanie developed other conditions through the years like spina bifida/scoliosis, vision/hearing/dental issues, dermatological biopsies/surgeries, seizures, etc.  She has been hospitalized a dozen times over the past two years post transplant with unrelated complications.  The Human Genome Project has opened new doors in genetics.  Stephanie did a blood test called a SNP array (single nucleotide polymorphism) and so did we.  She was found to have a partial chromosome 21 deletion.  Chromosomal changes can include deletions, duplications, or inversions.  I found lots of good resources and felt like all of her symptoms were finally explained. 

 

 As I recently wrote in Exceptional Parent magazine, “If families know will ahead of time what to expect, they can take better care of their children, and the children will reach their personal best potential.”  If you’d like to read our complete journey, see “What Genetic Testing Means for Families: A Parent’s Story” in last month’s issue of EP at www.eparent.com (preview is free).

 Resources

Genetics:

Genes in Life http://genesinlife.org

Genetic Alliance www.geneticalliance.org

 Rare Conditions:

National Institutes of Health http://rarediseases.info.nih.gov

National Organization for Rare Disorders www.rarediseases.org

Unique (chromosomal disorders) http://www.rarechromo.org/html/home.asp

 

Family & Kid Friendly info:

Family Village http://www.familyvillage.wisc.edu/lib_gene.htm

Kids Health http://kidshealth.org/parent/system/medical/about_genetics.html

 

 

Remain Hopeful,

Lauren

 

Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.