Friday, December 30, 2011

Christmas- 2011

Hope everyone had a wonderful Christmas!  We sure did!
We went to my cousins house on Christmas Eve.  We had the girls dressed in matching outfits, and they looked adorable!  I was a little nervous on how it was going to go with Macie.  She wouldn't nap at home that day, but of course fell asleep in the car when we were about 5 minutes away from Mike and Jackie's house.  I have to say the night went pretty well.  Macie had a few "moments", but overall she did really well.  She didn't want to open gifts, but that's understandable.  My family was so great with helping to make sure Macie was comfortable, and had everything she needed.  She is thoroughly enjoying all of her presents now that we are home with them!  Emma was loving opening all her presents, and she's non-stop playing with everything she got!
Christmas Day we went over to my parents' house.  We had some appetizers, opened gifts, and then had a HUGE dinner!  The girls were spoiled beyond belief, and they both had a great time!  Macie didn't participate in the gift opening again, but she does love all her gifts!  Emma opened all her gifts, and most of Macie's.  She was so cute, and said "wow", and "oh, petty" for most everything.  She also tried showing "Cie Cie" all her gifts and "sharing" them with her.  We got her best reaction came from the Curious George stuffed animal that "Geeba", and "Papa" got her.  She hasn't let him out of her sight since she got cute!!!
Thank you to everyone for all the very generous gifts, and for helping to make sure my girls had a wonderful Christmas celebration!

Monday, December 19, 2011

A HUGE bump in the Autism road

I may be brutally honest in this post, and the reason is for my own sanity.  Sometimes after I type things out in this blog I feel better....sometimes, I feel worse.  Right now I should be wrapping presents, and making cookies for Macie's teachers, but I needed some "me time".  Macie is in her room literally climbing the walls, dressers, shelves, and tearing all her books off the shelves.  I am trying to get her to nap, but that's been a challenge the past two weeks along with many other challenges.
Just a few weeks ago I was telling everyone how great it is to be able to go to parties and get togethers.  Macie had been doing so well, and her stress level was so much better.  She would actually interact with everyone, and seemed to be having a great time.  I had no idea how things were going to change as the holidays approached, and boy I wish I knew what was coming.  When you have kids, Christmas is supposed to be fun, and exciting.  You talk to them about Santa, and ask them what they would like for Christmas.  You bake goodies, put up a tree, decorations, listen to Christmas music.  There's just something so magical about Christmas.  That is... until you have a child with Autism.  I did that last post about the holidays and did not take one single thing on that list in to consideration.
To say it's been stressful around here would be an understatement.  Macie is a completely different child.  I feel like we've gone back a year and a half.  She's climbing everything, she's waking in the middle of the night, she's destroying many things in our house, she's having horrible meltdowns that have ended with me bleeding.  She's chewing everything she can get her little hands on.  All these things were getting so much better, but this holiday season has pretty much made her regress.  I worry that it's going to be a permanent regression, and that is by far my worst fear in the world right always has been.
All the new lights, sounds, smells, the running around shopping, going to parties, etc. has really put her in sensory overload.  You can tell she's confused, and overwhelmed.  She has a really hard time sitting still for anything.  School has noticed she's a little "off" lately.
It's just very sad to me that she can't and/or doesn't enjoy the holidays like I did as a child.  I so very much wish I could see her face light up when she opens her presents.  She doesn't open presents at all.  She's not interested in opening them.  It doesn't mean she doesn't like the presents that everyone so thoughtfully picked out for her, she just gets overwhelmed with all the wrapping and excitement.  She does play with toys, and she enjoys everything that everyone gets her, it's just that she does it at her own pace.  These are the little things that I forget too often.  We've talked to Emma about Santa, and she knows who Santa is when she sees a picture.  She loves all the "peeeeeety", and "cute" lights, she loves baking, cooking, wrapping presents, decorating the tree, and she loves unwrapping presents.  I love to see her face light up, and she'll say "Wow, cute" when she sees what's under all the wrapping.  Macie has been robbed of the ability to share these simple pleasures, and I am just so sad for her.  Maybe I am more sad for me, for us because she doesn't know the difference.  She just knows that something has changed around here, and all of it is pushing all the wrong buttons with her.  I am finding it very hard to really get in to the "Christmas spirit" this year.  Our world was pretty much turned upside down by autism, and now what is supposed to be such a wonderful time of year is a sensory nightmare for Macie.  It's just not fair.  There is so much stress and anxiety around here, it's hard to get in the spirit.  I am trying so hard to snap out of it, and make the best of it but it's hard.  When Macie is "napping" it's my time to let loose and scream, cry, throw things, and just let it all out.  I can't do that around Macie because I know it will only escalate her emotions right now.
If you got this far.....thank you for letting me vent, and for understanding what we are going through right now.  So there it is.......Merry F'ing Christmas, right???
I also want to thank Susie, Nelson, and Jaden for coming to our house on Saturday instead of us going there.  They were kind enough to offer to come here so that we wouldn't have to take Macie out of her comfort zone for the night.  We appreciate that so very much.

Wednesday, December 7, 2011

Helpful tips for the Holidays

This e-mail came at the perfect time!!!
I get overwhelmed during the Holidays, and sometimes I forget how all the festivities must overwhelm Macie as well.

By Raun K. Kaufman
Director of Global Education
Autism Treatment Center of America
Ah, the holidays. Special meals. Special family gatherings. And, of course, our special children! Oftentimes, we just barrel through the holidays, hoping for the best - but not taking the time and focus to make sure this celebratory time really feels like a celebration for us and for our children on the Autism Spectrum. Most of us find ourselves unwitting participants in at least one of the 10 Holiday Hiccups.
We know we're in a hiccup when our special child is having more meltdowns. When our extended family members appear uncomfortable or at a loss. Or when we, ourselves, feel stressed out or burned out.
We may blame the hectic holidays, but, in reality, it's not the holidays causing the difficulty; it's the pitfalls we mistakenly step in. This is great news because it means that our challenges are preventable!
Take a look below at the 10 Holiday Hiccups - and How to Prevent Them. You'll be thanking yourself from now till New Year's!
  1. Stopping Your Child From Isming ("Stimming")
    Given the commotion and routine-change of the holidays, this is the most important time for our children to be allowed to self-regulate and cope with their environment. We know that isming is crucially important to our children and their nervous systems. Ideally, of course, we would join our children in their isms. But even during the times over the holidays when we aren't able to do this, we can still let our children do their thing. When we do this, everybody wins!
  2. Feeding Your Child "Crash & Burn" Foods
    Yes, it's the holidays. Sugary, wheat-filled, dairy-crazy foods abound. It can be tempting to allow our children to partake in this glorious cornucopia. We might think it will be easier to just let them have it this once. Let me assure you: it will not be easier! There are a host of foods that we know are not going to be processed well by our children. Yes, the first few minutes of allowing them to eat whatever is around might seem easier. But a few minutes later…it's crash & burn time. The melt-downs, overeating, challenging behavior, and diarrhea that will result are truly not worth it. Taking the forethought to either keep these foods away from our children or - better yet - not have them around at all will make the whole holiday experience a million times easier.
  3. Surprising Your Child
    Sometimes, we can be so busy planning and getting ready for a holiday outing (e.g. going to grandma's) or project (e.g. putting up the Christmas tree) that we forget to notify a crucial participant: our special child. Although our intention is not to surprise our children, this is often what happens when we depart on an outing or embark on a project without explaining everything that will happen to our children in advance. Even for our non-verbal children, explaining ahead of time what will happen and why it will be fun for them will go a long way toward minimizing tantrums and maximizing cooperation.
  4. Leaving No Way Out
    It is very common to go to someone else's house for a holiday celebration. Usually, we just take our child and hope for the best, thinking that we don't have a lot of control over the matter. But we do! We can designate, in advance, a calm room or space where our child can go to decompress once they begin to be overwhelmed by all of the commotion and sensory input that comprise most celebrations. Every so often, it can really help to take our child to this room and spend some time alone with him or her.
  5. Focusing On Stopping Challenging Behaviors
    Most of us dread our children behaving in a challenging way. We worry about it, we look for it, and we try to stop it as soon as it happens. Ironically, this puts all the focus on what we DON'T want from our children. If we don't want our children to hit, for instance, focusing on "not hitting" can actually create more hitting. Instead, we can celebrate our children every time they do something we do want. If we have a child who sometimes hits, it can make a huge difference to actively look for any time our child is at all gentle - and then cheer wildly!
  6. Giving An Over-Stimulating Present
    Sure, we derive great joy from the experience of giving presents for our children. But when it comes to our special children, we want to be especially cognizant of what type of present we give. If we give a present with flashing lights and loud beeps, we're asking for challenging behavior later. Let's take some time to sincerely consider whether the gift we are about to give is going to contribute to the over-stimulation of our children with sensitive sensory systems.
  7. Leaving Our Children Out Of The Giving Process
    We always consider our special child when purchasing gifts. But do we think of our special child as a potential giver of gifts? Thinking of other people - what they want, what we could do for them - is an essential element of the socialization that we want our children to learn. The holidays provide the perfect opportunity for this! We can schedule sessions with our special child in advance where we help them create something for one or more of the people in his or her life. (These gifts and activities can range from very simple to more complex, depending on our particular child's level of development.) Then, on the day of gift-giving, we can invite our special child to present (as best he or she can) any gifts that he or she has made.
  8. Expecting Your Family To "Get It" 
    Many of us may, at times, feel frustrated with members of our extended family for not being more understanding and responsive when it comes to our special child. But, remember, if our extended family members don't live with our child, they won't "get it." When taking our special children on visits to extended family for holiday visits, we can send e-mails to them explaining what they can do to make the visit comfortable for us and our child. We can take this opportunity to explain why sudden loud noises might be problematic, or tell everyone the answer our child likes to hear when he or she asks the same question over and over. This way, we stack the deck in our child's favor.
  9. Thinking That Activities Need To Happen Outside Your Home
    We know that children on the Autism Spectrum will always do better when they are not over-stimulated by the many sights, sounds, smells, and unpredictable events of the outside world. So, we can create experiences in our homes that we would normally go out for. For instance, instead of going to an evening parade with a festival of lights, we can put Christmas or Hanukkah lights around the house, turn off all the lights, and play holiday music at a gentle volume. Some of us might be concerned about depriving our children of fun holiday experiences, but keep in mind that when our children can't digest the experience, they're not having the fun experience we want for them, anyway. That's why, if we can create a digestible version of the outing at home, our children can really take in and enjoy the experience. Thus, we are actually giving our children more, not less.
  10. Seeing the Wrapping Instead of the Gift
    So often, we get caught up in the trappings of the holidays - the tree, the presents, the outings that have to go exactly as planned. It's okay to arrange fun things, but remember that these are only trimmings. They aren't the gift, they're just the wrapping. The gift is our special child. The gift is sharing sweetness with the people we love. Instead of using the holidays as a planning fest, we can use it to see the beauty in our child's uniqueness, to celebrate what our child can do, and to feel and encourage compassion for our child's very different way of experiencing the world.

Tuesday, December 6, 2011

One of those days.......

in which I want to give autism a big middle finger followed by a big F YOU!!!
Macie has a minor cold, and I think it sends her in to sensory overload.  She can't obviously tell us what's bothering her so her way of dealing is climbing EVERYTHING, chewing EVERYTHING (including glass), and just being frustrated with EVERYTHING!  It's weeks like this one that I am very angry, and sad.  I am pissed that autism exists in our family, that it is something we have to deal with on a daily basis.  I am sad when I see a look of confusion on Macie's face, and I can't find the perfect way to help her not be confused.  When you are the parent of a child with autism, you don't get a break.  I am not talking about a vacation, or a night out without the kids.  I am talking about a mental break.  I am constantly wondering how Macie is doing in school. Is she having a good day, a bad day?  Is she struggling because as parents' are we not doing enough to help her?  I am constantly worrying about her, wondering if she understands the world around her, if she knows how much I love her, and want so badly to unlock this "trap" that she is in.  I also see the look of confusion on Emma's face now when she tries to play with Macie.  She doesn't get that Macie is "different", and Emma is not at the point where I can explain it good enough to her.  We struggle so much with discipline because Macie does "naughty" things to get input for her sensory needs.  Emma mocks everything Macie does, and it's hard to make Emma understand why it's not ok for her to do some of the things that Macie does.
I'm just so flippin' frustrated this week.  I blame myself a lot for Macie having autism.  I don't have any concrete reason for blaming myself except for the fact that no one knows the cause, and no one has a cure.  Believe me, I would LOVE to have someone else, or something to blame!!!
I would give up pretty much everything to hear Macie's voice, and to hear her say "Mama".  I don't know if that is ever going to happen, but I am never going to stop trying, or stop trying to help her out of the neurological prison she is in.

Friday, December 2, 2011

Playing catch up with pictures

There are a lot of pictures.....

We took the girls to Airtastic last weekend, and they had a blast.  There was some crying from both when it was time to leave.  

Thanksgiving at Grandma and Papa Scimecas house.

The girls got to help decorate the tree after dinner.

They had a very good time.  This was about 5 minutes in to the ride home!

The many faces of Emma

Our trip to the tree farm to cut down our xmas tree

The whole gang!

Daddy and Emma picking the perfect tree

Mommy and Emma trying to stay dry and warm, it was a very yucky day.  Macie wanted nothing to do with being outside.  She hung out with Grandma in the nice warm car!!!

Daddy cutting down our tree

Tree decorating time

I'm waiting on YOU, Santa!

Emma and Macie helping to put the star on the tree

Otis snored through most of the decorating.

The final product.