Everything will be OKAY!

Dear World:
One month ago today My H, John K Moroney passed away from a long battle with cancer, and I miss him terribly.
I am still crying at the drop of a hat at random things so I just ask the following things to help me (and basically anyone who has suffered the recent loss of a loved one):
 
1. Please do not tell me he is in “better Place”, “is no longer in pain”, “Mattie and I will be Fine”, “time will heal my pain” etc…. I KNOW all this, but it does not help to hear them right now.
 
2. Please don’t ask what I am going to do with (insert something that belonged to H) and if you can have it. A) not thinking about that yet, B) no
 
3. H’s Things are not like sand on the beach during a vacation. They are NOT anyone’s to take as a memento. This applies to EVERYONE. (and please see #2
 
4. Please do not “drop by” to check on me. Please call first. I am exhausted, my house is full of boxes with things that need to be sorted (so it is a mess), and I am trying to nap an hour a day. I would probably rather meet you for a coffee.
 
5. YES, I am eating. But, who doesn’t love homemade goodies? 😉
 
6. Don’t tell me to call you if I need any help. My brain is mushy right now and I still have no idea what help I need. Be specific. Call me right as you are going to the grocery store and ask if I need anything.
 
Please understand, that my life right now is very complicated emotionally, I am dealing with an incredible amount of paperwork, and very stressful in almost every way imaginable.
I just need a little space right now to get my bearings and breath.
Give me a little time.
Because, I am SURE
Everything will be OKAY.
Love you all.

Take a Walk in My Shoes First… Janet Smedile

The following is a post by a friend in regards to some tasteless jokes/status that have been circulating around Facebook.  It is with her permission that I am posting it here.  Sandy Moroney

After seeing some rather nasty posts and one-sided articles over the past two weeks about vaccines I am using my wall to rant a bit.

TRUTH – Many vaccinations contain neurotoxins in the form of preservatives and other such chemicals that are KNOWN to be harmful. The vaccination schedule is much more intensive than it used to be thus some infants / toddlers bodies / brains cannot handle it. Our Steve has a neurological condition that made him vulnerable from birth so I have researched this extensively. Many parents are choosing NOT to vaccinate their children. I understand why but I also have had to think about my child’s susceptibility to disease and the welfare of others. Here is what we did as parents: asked our doctor for preservative free vaccines and had the schedule be spread out. Our pediatrician was great about this. For the later vaccines Steve needed, the doctor did blood work to see if he already had immunity for some of the diseases and we vaccinated accordingly. It does not have to be an all or nothing issue. Also before anyone says that I don’t know about children with conditions thought to be caused or exacerbated by vaccinations or other environmental factors, I have worked with children with exceptional needs off and on since I was 19 as a teacher so I have taken the time to honestly look at this subject. For those of you who have not walked in my shoes – clean your own house before you try to clean mine. Sick of the bitching, sniping and whining on this subject – just like politics – go do something about it instead of posting stupid crap and inappropriate jokes about autism and other neurological disorders.

The Autism Club, It’s No Joke

Some things are important, some are not.
What is important, can sometimes depend on one’s perspective. Where you’re coming from, what kind of cards life has dealt you.
One thing that should always be important is respecting others, even when what they believe to be true is different from what you believe in. This should be basic stuff you learned in Kindergarten, though many who claim to be highly educated still have not learned this lesson.

Some times it is not the journey, but the destination that is important, which brings me to the point of the soap box rant de jour.

This past week, a friend on Facebook came across a post that contained a link that supposedly told how the MMR shots caused Autism.  When you clicked on the link, there was one sentence on the screen that read,  “They F***ing Don’t”.  Some how this was supposed to be a joke, and we all were going to have a good laugh.  Instead of laughter, my jaw dropped.  My brain actually froze for a second, as I could not believe how anyone, ANYONE could think this was remotely funny, or anything but insensitive.  It didn’t even matter to me, the how or why of Autism, but the fact that someone made a joke out of something so devastating to families all over the world. What were they going to do for a follow-up, make a joke that started, “Three Women with Breast Cancer go to a bar…”???  I was told the post “evaporated”, but the damage had already been done.

My point is, in this instance, the how or the why of Autism does not matter.  What matters is that Autism is not in any shape or form, funny.  Yes, laughter is the best medicine, but in this case the punch line was just a punch in the stomach, to those already suffering a devastating medical syndrome, that has no known cure.

You see, there is an unspoken Rule in this Autism Club, and it is no joke.  We have each other’s backs.  No matter what.  And Sometimes it is the only thing we in The Club can count on.

 

Club Autism

Kath has Mattie Signing MORE
Kath has Mattie Signing MORE

The Club.

It is a Club you Never want to be a Member of.

Once *You* (and I mean your child AND Family) are a Member, you are a life member.

The Club Dues are very hard:

You WILL lose friends (they were never true friends)

You will lose LOTS of money (medical evaluations are extremely costly, annual, and most are not covered by insurance)

You will need special and expensive equipment ( adaptive wheel chairs, indoor swings hung from support beams….)

Ordinary babysitters will not do, you will need specially trained staff-usually ASL, CPI and trained in behaviors… this means they are very expensive..

Non-verbal children will need Adaptive Tec equipment to be able to communicate

Then there are: the constant flux of people coming in and out of your home (essentially you will have no privacy), Home trainers, SLP, Evaluate-rs form ARC, DDD, Public School trainers… this list is never-ending…

Stress on you, Stress on child, Stress on everyone.

The Club Benefits:

You will meet and befriend some of the MOST incredible Human beings on the planet… and they will “have your Back”, love you for who you are, and never judge you…

Club Autism.

1 in 50 children in school today.

I bet you know Someone in The Club….

Smart Words, Please

There are still some groups of people, types of disorders, or general nuances that “OK” to make fun of, and Ridicule, all in the name of “It’s only a Joke”.

Mattie’s Sisters, Kath and Tina at Tina’s Graduation

I bring this up because lately, it seems, many are using the

ending “tard” with an explicative in front of it to make a joke or refer to someone or some thing that is beyond the obvious. And I wonder how many know what they are truly saying or inferring.

The Word “Retarded”, when used in it’s true and unbiased meaning, has never bothered me. It is when it is used to insult, or to demean, that it is unacceptable in my world. So to use it’s suffix with a swear in front of it, well, that could possibly be the worst. It is like adding insult to injury, almost literally. I am hoping that this new-ish word grouping will loose its popularity, as did the once accepted use of the word “gay” in the same instance, and become just a blip in our society’s misjudgment of each other.

As my Grandmother always told us when she heard someone cussing, “There is always a better word, Show them how Smart you are.”

Myth-ing About Autism By Barbie Ann Cashman

Common Myths about Autism
•Myth #1
Everyone with an ASD has a special extraordinary talent, like in the movie “Rainman,” Dustin Hoffman has a talent for numbers, so his brother took him to Las Vegas to win some money.  This is not so, some are talented, but many are not.
•Myth #2
Everyone who has ASD is a genius, a Thomas Jefferson in waiting.  There are a lot of talented people with ASD such as, Beethoven, Isaac Newton, and Albert Einstein, but not everyone is a genius.
•Myth #3
Everyone who has an ASD is mentally retarded, not so.  Most people with ASD’s are just like the general population, some have special talents, some are geniuses, and some are retarded.  But most are just average people.
•Myth #4
Everyone who has one symptom of ASD has an ASD, no.  Just because a person has one or two characteristics of an ASD, does not mean he has it.  It is more based on severity of behavioral in areas of social interaction, communication, and repetitive stereotypical behaviors that causes concern.
•Myth #5
There is no cure for (or recovery from) ASD’s, advances are being made every day.  There’s no pill to cure everything, but many are currently living symptom free, thanks to the interventions that they have received.  Many people have written about how they recovered from ASD’s.
•Myth #6
People with ASD’s have no emotions and do not get attached to other people. Autistic people may show emotions differently, but that does not mean that they don’t have feelings.  Some people express emotions differently, and others are unable to show emotion at all because they are not in control of their muscles or motor planning.  They are capable of forming attachments with other people, and do so.  Some will date, get married and have children, just like you or I.  They may be less expressive about their feelings, but that doesn’t mean they are not attached to others.
           Barbie is a Special Education Para, Licensed Early Education Teacher, and is working towards her Special Education license

Autism and Winter Humm-Drums

The crazy, cold, dreary winter is here, and spring is no where to be seen. In our neck of the woods, good ole’ New England,  the frigid, bleak weather can last until April, which starts our rainy spring.  Typical children and adults as well, can become depressed, and in the children’s cases’, behavioral.  Now add Autism to that equation, and it’s no wonder that most occurrences of meltdowns, tantrums, and overall bad attitude, happen during this time of year.

So how do you survive this time of year with an Autistic child??  It takes a little creativity, some pre-planning, and a whole lot of patience.  Think ahead of the game.  February vacation will be here soon enough-do you have some respite and activities set up yet?  Make calls to all your back up help, respite providers, and capable family members, and book actual days and times  for them to help out.  Put it on the calender.  A few hours off a day can make all the difference to an exhausted caretaker.

Think of fun, unusual things to do.  Get a 6’x6′ tent, typically on clearance this time of year, and camp out in your living room, or the child’s bedroom.  I also get an area rug for underneath it , as I have hardwood floors.  With a plastic bin for books, flashlights, Legos, and music headsets, and you have a brand new playground.

Rotate the child’s toy.  Put some that they have become bored with, away until summer vacation.  Bring out some of the new items from Christmas, along with things you have most likely stored in closets and toy boxes.  Forgotten toys become new ones.  This is best done before hand, with no kids around, as little ones can become attached to certain items, and stress out when they are put away.  It’s a good time for a new puzzle, a classic children’s movie and nothing beats a coloring book with a fresh box of crayons.

And, of course, take the child outside to play any time weather permits.  Exersize of any kind, up until an hour or two before bed time, will make them happier in general, and easier to get to sleep.

So start thinking of people (helpers), places (indoors and outside activities), and things (rotated and new toys and items), that will make the long Hum-drum winter go by.  And above all, remember to take a deep breath, a step back, and take a little time off for yourself.   Because even adults can have a meltdown, when they are stressed out.

Christmas Gifts and Autism

What do you get a child that does not play with toys  or just  breaks the toys he does have,  and everything else, for that matter.  This can be a tough problem not only for the parents of these children, but the friends and extended family that  rarely sees them but once a year.  Welcome to the holiday frustration of having an Autistic Child.

There are a few basics to keep in mind when attempting this exasperating task.  Function level of the child, and what the child enjoys doing-right now.  The function level of the child, can be the hardest to figure out,especially if you are part of the extended family,or a friend, and hardly see the child.  Age appropriateness won’t work here as most of these kids are either developmentaly or socially delayed or both.  So what a typical 10 year old boy would love, would be inappropriate and even harmful to the Autistic child.  It never hearts to ask, “What kinds of things is Mattie into these days?”.  This would be a much nicer question than, “is Mattie still using baby toys?”.  If you can’t ask the parent direct, ask someone who is close to the child-just make sure they  give you an accurate picture, and not well meaning misinformation.

Now the big question: What to give??  It’s ALWAYS good to go with the KISS method- Keep It Simple Stupid.  Keeping in mind  the child’s function and social level,  a higher functioning child that has social skills trouble, would benefit from things that his peers could relate to, and even interact with the child with.  A hand help game with a game at his level could inspire peers to interact with the child and promote socializing.  I once heard of a family that’s Autistic son only wanted a Nintendo for Christmas, that’s all he ever asked for.  So every year the family bought him the latest Nintendo and donated the old one to charity.  The child was thrilled every year, and another, less fortunate child, got a great gift as well.

If the child likes books but only a certain kind, and has them all, replace the worn out ones and again, donate the used ones. Same goes with DVDs, but before I wrap Mattie’s new DVDs I take the DVD out of the package and put it aside as Mattie will ALWAYS scratch the brand new one even before it gets played.

My favorite thing to tell people to get Autistic children, is an indoor swing.  A few great companies for these are:  http://www.southpawenterprises.com/Default.aspx,  http://www.abilitations.com/http://www.flaghouse.com/   Living in the North East, where we can have days,even weeks of bad weather, it’s great to have an activity for the kids to do that will keep them entertained.  And you really don’t need a lot of room.  Mattie’s swing is in our family room, with a 10 foot clearance all around.  It is hung from a perminate  weight bearing o ring that we had a licensed carpenter attach to the ceiling joist, with an adaptor kit from the swing company.  If you are thinking of doing this, a licensed carpenter is a must, and instillation should be done before the holidays.  There is nothing worse than a child unwrapping a swing and not being able to use it because the carpenter wasn’t available before Christmas.  These types of swings can usually be funded by allocated funds by the ARC or Family Services of DDS, formally DMR.  The ARC can be reached at http://www.thearc.org/NetCommunity/Page.aspx?pid=183

Just remember, most Autistic children have no idea how much you paid for something, so this gift TRULY needs to come from the heart, and with a little research before hand, you should be able to make the child’s Chrismas a happy one.  But, as always with Autistic kids, you just never know how things will effect them-so just go with the flow, and enjoy what you can!!

Surviving Thanksgiving and Autism

The  Holiday Season officially begins with Thanksgiving.  The time of year, you can see the visible shudders of parents and grandparents of children with Autism.

While your child’s social awkwardness spotlighted, so is the ignorance of those not normally around an Autistic child.  Every cliche that has ever been said about Autism will be said over, and over again, during the Holidays.  Relatives seen only annually will have great expectations of the Autistic child from a year ago.  By now, the child should be speaking, toilet trained, reading, sitting quietly at the dinner table, etc.  And why aren’t they??  Don’t you have them in the right school or Program?  Well, you will be told, “Don’t Worry, My friend’s cousin’s daughter’s best friend’s son started talking magically at 13.”  There, You see!  Everything will be all right. Your child just needs  more time, that’s all.   It’s as if the more it is recited, the truer it becomes.  You will be given the names of books to read, websites to look at, and yes, the name Jenny McCarthy will come up, and how she “cured” her child.

What it comes down to is tolerance.  Not towards your child’s behavior, this time, but  towards those who truly do not understand, and perhaps only ever remotely try to, for a few days out of the  year.  It is brain numbing enough for them to endure Autism for Holiday season, or God forbid, year round.  The best way to deal with these people??  Nod, and say nothing.  Things are too hectic to truly teach them anything this time of year, and frankly, they really don’t want the specifics of all the ABA and Hippotherapy that your child is getting, nor do they want all the updated statistic regarding autism and it’s  diagnosis.

What they really want, deep down is to show, in their own awkward way, that they care.  Because, family is family.  So, just nod, pass the gravy and take a deep breath.  Soon enough, they will be gone, you will be doing the dishes, and life will be back to normal.  At Least, your kind of normal.

Autism Hint of the Week #3

Get to a Support Group.  And not for the reasons-initially- you may think.

First, obviously you’ll need to find one.  A great resource for this is The ARC  http://www.thearc.org/NetCommunity/Page.aspx?pid=183, and the Northeast Arc http://www.ne-arc.org/index.htm.  Which is, in general, for all Developmentally Disabled people.  Also ASC -Autism Support Center in the Northeast http://www2.shore.net/~nsarc/, can be a great help.

Many would believe that when you go to a support group, everyone sits around and cries while others console them.  Once in a great while, this does in fact happen, but mostly it is an exchange of  ideas on how to cope with your child and his/her unique problems.  And  many times there are some great ideas for resources-funding- for your child’s needs.

THIS  could be some of the BEST information you will ever receive regarding your child.  There are resources out there that you need to tap into.  Being in a support group can show you the way to these, and also towards great workshops, lending libraries, PCA help (Personal Care Attendants), RESPIT help and funding, and “allocated Funds”-the magic wording for monies given to you to be spent appropriately on your child.

So if you are not in a GREAT Support group, like mine,with amazing staff moderating-“Hello to Maria and Nicole”- find one.  And quickly.

And yes, in the end, you will find friends who will join you on your journey to find well being, for both you and your child.