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.

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!!

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.

Autism Hint of The Week #2

Don’t wait in Waiting rooms.  Doctors Appointments, Dentist Exams, and other frequent visits that require a wait before being seen, can be a deal breaker for how well the actual visit goes, with an Autistic child.  Call ahead before you get to the office of the appointment, ask them if they are running on time, and tell them your child is Autistic and doesn’t wait well.  Ask them to take your cell number and call you when they are ready for you to be seen.  Assure them you will be right outside their door, and just want to keep your child calm and get the most from your visit.  I even have popped my head in my Pediatrician’s office to tell them “We’re here!” and then Mattie and I do laps in their nice big building, till they call me that the nurse is ready for us.  It NEVER hurts to ask for this kind of help, they would rather have your child calm than tantruming in their waiting room!!

Halloween was a Treat this year!!!

Mattie did SO well this Halloween, thanks to his on going ABA training, and his PECS “Trick or Treat” card his teacher made him.  We went to about 15 houses with my twin Godsons (one of which is also Special Needs), and everyone was in a great mood and VERY well behaved!!  Remind me to bring that card again next year, because that was the key.  Not only did Mattie use it PECS appropriately,meaning he handed it to each person opening the door, and then pointed to each word as he has been taught, but now my neighbors are more aware of Autism and it’s impact on not just one child, but the entire community! Win, Win, for everyone this year!! (Oh, and I scored a few Reese Cups as well!!)

Autism and October 31st

So here we go again.  Halloween is this Saturday, and having a child with Autism, this holiday can be tricky and not always a treat.

First, there is the costume ordeal.   My Mattie has never been a Disney Fan, so that rules out 75% of all child costumes.  And I NEVER do gory.  GEE, wonder why??  Hmmm…..,I bet it wouldn’t be a good idea to teach a child that takes EVERYTHING literally, that it is OK to pretend to be hurt or play with a knife or that blood is funny.  So, what are we left with?  He loves Dora, but I am NOT dressing my ten year old son like a girl, or her monkey sidekick, for that matter.  And any show on PBS- and he likes them as well-is too young for him to dress up as.  That leaves us to be an Army guy-like his Dad-for the 5th year in a row.  No ammo, or weaponry of any sort, of course, just comfy fatigues and hat, and a bag for his goodies.

Our second Halloween obstacle to overcome is the actual Trick or Treating.  This in our case, requires some preparation, and help from our neighbors.  3 years ago, Trick or Treating was disastrous for us.  Mattie would not go to anyone’s door, and the  few houses he did go up to  he tried to go in their houses, and stay a while.  Thank God, my neighbors know and love him, or this could have been REALLY bad.  The following  year, I tried something new.  The day before Halloween, we first called then visited,the few neighbors I knew would be willing to help us.  A ding dong trial run, you might say.  It was a full dress rehearsal and all went well that night and on the actual holiday.  And then there was last year.  I felt no trial run was needed, as things had gone so smoothly the year before, so we got Mattie into his Army costume after an early dinner, and did a quick run to my mother in laws so she could see how cute he was.  On the way home, in the car, Mattie fell asleep-and slept right through trick or treating.

And here we are again.  Army costume , again.  Our favorite neighbors have already been asking me if we will be coming for candy at  their houses this year.  I hope so, is my reply.  Mattie’s teacher has provided us with some PECS (pictures with words) prompts to help us along.  And Dad is ready to walk the neighborhood with his favorite junior officer again this year.  We hope.  Stay tuned.  I’ll let you know how it goes.  Or doesn’t.

Twittering about Facebook, and, of course, Autism

Yes, I have joined the ranks of  millions who twitter.

As a Facebook addict, I rebelled at first.  What, no pictures?!  No Farm Town?!  People will start  to “follow” me,but won’t be my “friends” ?!  But, I’m worth $3.3 million dollars on Farm Town!

You will love it, give it a chance, said sister Maxine.  Follow people,  and they will follow you.  Look for people that twitter about Autism, or what ever else you’re interested in, AND  keep up with it!!  She bellowed.  Ok.   She didn’t bellow, but she typed: IN  ALL CAPITALS!!!

So I have been twittering for a few days now, and am just starting to get the hang of it.  Things are said short, but not always said so simply.   That is where the “lingo” I am just starting to learn, comes in.  DM, means: direct mail me.  Learned this from another Autism mom when she wanted the someone to DM her the scoop on the first 1/2 hour of “House”.  NO!, I typed to her, I have not seen it yet!!  That’s why I wanted it DM-ed to me, so no one else would see it,she typed in return. <Oops, sorry>   Then she graciously clued me in to the DM.

The more I learn about this new way of publicly declaring myself, the more I understand how it can become addicting.   On Facebook, you gather friends from your past and also make new ones via the games and groups that you play and join.  Twittering is more about the ‘right now”, and  not so  much about reminiscing with old High School pals.  It’s  more about chit chatting  current  topics, and social dilemmas,  sometimes with perfect strangers, and a few celebrities, now and then.

With Twittering, you can create your own forum, or jump into someone else’s.  I can vent about my day with Autism, also known as my son Mattie, or I can tweet a comment about one of my favorite TV shows, or what is going on in Afghanistan.  It is the short version of the world all wrapped up in 140 letters, numbers and spaces.  I can tell the world of my new blog post and still be able to find a new Dora episode on TV for Mattie to watch all under a minute.

For expressing myself to hearts desire, I’ll keep my blog.   For harvesting pineapples with my new “friend” Marlene from Sydney, Australia, and catching up with old chums Liz, Karen, and Janet, I’ll stick with Facebook.  But when I have just one minute, or a few, I’ll Twitter,which may win in the long run,  because with Autism, sometimes all you have, is one minute to yourself.