There is a Santa Clause

A very long time ago, before my special kids were even in the picture, I had a friend named Patti. Patti worked very hard cleaning houses in order to support her 5 children without any help from anyone. She was and is an amazing woman; she never complained and always tried to do the best she could for her kids.


It was about 27 years ago and the Cabbage Patch dolls had just become "The Thing" that the little girls wanted most. For months before Christmas Patti tried to accumulate the money to get her little daughter her very own Cabbage Patch Doll. Unfortunately something would happen and the money she was trying so hard to put away always needed to be used for other, more pressing things. Then, as Christmas grew near, it became impossible to even get the dolls. There were none available to be had. One day we heard that a local store was getting a small shipment of the dolls so a bunch of us went to stand on line, waiting and hoping that we could get one doll so Patti could give it to her sweet little girl. Unfortunately, none of us had any luck. Patti tried all the way until Christmas Eve, by now she had squirreled away the money but there were no more dolls.

My oldest daughter and I spent Christmas Eve with a friend named Rose who had 2 daughters. We were sitting around chatting and the girls were off playing somewhere unable to hear our conversation. Rose confided in me that she had sent away for 2 Cabbage Patch Dolls, one for each girl but, she got 3 dolls in the package that had been delivered. Knowing how difficult it was to get the dolls, Rose told me that she didn't want to send the one back, but did not know how to give one girl two dolls and the other one. Patti and her daughter came to mind immediately. I told Rose about what had been happening and asked if paid for the doll, would she give it to me for Patti? Rose asked me to wait, she left the room and came back with a doll. A pretty girl doll with blonde hair, just like Patti's daughter. Rose handed it to me and said, "it's her doll, no need to pay for it. It is going to where it should have been in the first place; it came here with a purpose!"

I called Patti, and asked, "Did you get a doll for Rachel", Patti said she had not been able to get one. "Well, you have one now," I said, almost losing my breath from happiness. I asked her to bring Little Rachel to my house in the morning so I could share in the moment. Patti cried and I cried and Rose cried too. It was a Santa Miracle!

The next morning I set the doll on the floor in the middle of the living room, still in the shopping bag that I used to take her home the night before. A few hours later Patti and Rachel walked into the room. We all wished each other Merry Christmas and although we usually sat in the kitchen, that day I invited them to sit in the living room. I walked over the the shopping bag and said, "Rachel, this is for you, it is from Santa Clause! You need to come over and see what it is". Surprised, she walked over and looked inside the bag. The tears were apparent in both Patti and my eyes as we watched Rachel pull out the box and carefully open it to reveal her wonderous gift She was so happy, the house was filled with an indescribable feeling of warmth. It was such an amazing moment.

So you see, I believe, there is a Santa Clause. He brings miracles to those who need them most, and not only at Christmas. Some of these are small little things and others are huge awesome things. They could just equate to a moment, a movement, a smile or just the feeling of a sweet baby's skin, a child looking out the window and really seeing a bird or a leaf. These Santa Miracles are not only for kids, they are for the kids in all of us. So during this holiday season and all year long, I wish you at least one Santa Clause Miracle, even if it is just the twinkle in the eye of a loved one. Wishing you all A Happy Holiday season and the joy of a Santa Miracle throughout the coming year!

My Daughter is Autistic and That is Okay

Recently, someone who had not yet had the pleasure of meeting our daughter asked me to describe her.  We were inquiring about placing her into a playgroup at their facility and they were curious as to how she would operate within the group having, well, autism.  More specifically they wanted to know if she could get along with other children and follow direction from adults.  I explained that while following direction is sometimes hard for her, we have special cues for her that help her stay on track and that she gets along well with other children.  They were hesitant yet glad to hear it of course, and I could not help but feel I was talking about enrolling our furry family member into doggy daycare, instead of our six year old daughter to a playgroup.

As the conversation went on the all too often question finally came of “just how autistic is she.”  We get it all of the time, from those who have fears of just how difficult she will be to work with, to those who meet her and are surprised when she does not quite meet their stigmatic expectations.  I explained that our daughter is considered high functioning and that many times those who do not understand how broad the spectrum is or what they are looking for may not even realize upon meeting her that she in fact has autism.  Before I could continue to explain how this often makes things difficult for her, the person on the other end of the phone exclaimed “oh that’s great,” undeniably satisfied that my daughter’s autism would not get in the way of the happy environment they had created for their other families.  Though the clear attitude received that autism is somehow an insult; to my child, to our family, or to others, made my stomach drop, it is clearly a bigger problem that falls far outside the length of this one phone conversation.

 

1. Autism is not an insult.  More often than not when we explain that our daughter is on the milder end of the spectrum people react as though they are relieved for us, and often themselves, that she may not “appear” as autistic as they originally imagined based off of their often limited views of what autism is.  Although I know this reaction is not meant to harm and is only natural having likely never experienced truly loving someone with autism, the reaction is most unnecessary.  We just don’t view it as a rampant negativity.


2. Autism does not define our child, but it is a part of her.  Our daughter is who she is with or without the label of autism.  She is defined by the light possessed within her very being, not by a disorder.  With that said having autism has shaped how she sees the world and interacts within it.  Being afraid of my daughter’s autism is like saying you are afraid of my daughter, but only you are not looking at all of her, you are only looking at the parts of her you find difficult to relate to and understand.


3. Our daughter needs acceptance in group activities just as much as those group activities need her.  We aren’t placing our differently abled daughter into playgroups at the unfortunate expense of other families.  While it is true that the best way to teach an autistic child social skills is to integrate them with other children, it is also true that the best way to teach typically developing children social acceptance is to integrate them with children who are differently abled.  The best part is that kids are often the last to see these differences in the same light that adults do.  Stop worrying about the negative effect my daughter could have on other children, and start embracing the positive.


4. Telling us she does not seem autistic is not a compliment, although I know it is often offered as one.  As previously mentioned the fact that our daughter has autism is in no way an insult to who she is.  Comments like this one more so go to show that too many have a preconceived notion of what autism is and that it is somehow bothersome that our daughter has been “labeled” with it.

 

Much of the world is still clearly lacking awareness when it comes to such a highly prevalent developmental disorder.  While the current statistics from the CDC are showing 1 in 68 children have been identified with a pervasive developmental disorder, most people still only refer to that one guy they knew back in high school, or the key autistic character on a popular television show.  The spectrum is much broader than you think and since each person also is born with their own personality and family structure it makes each person with autism unique, just like the rest of us without.

Our daughter is autistic and that really is okay.  We, more than anyone, are fully aware of what that means when it comes to her.  We never mind people inquiring, but the approach is often rather off.  It is not her autism that is frightening or hurtful, it is other people’s views of what that diagnosis means for her that is.  I cannot speak for everyone who has a child with autism or different developmental needs, but I can tell you what would be a much better way to approach this situation when it comes to our daughter.

Dear sibling to a child with "specialties": Let me tell you why you're amazing....

Hey there little friend,

I heard you are the sibling to a child with "specialties" and I wanted to write you a letter explaining why you have a one up on life.  I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth.  Let me explain...

I heard that you deal with more than any child should, like having your parents spend a lot of time away from you.  You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly.  I know my friend.  You see these happenings more often than not.  You see the love that your parents have for your special sibling and it is being embedded into your heart.  You see the patience they exhibit when caring for him or her and it is being buried into your soul.  You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind.  You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this.  You may not know it, but all of these "little" things are teaching you traits of how to be an amazing person.

I'm certain that being the sibling to a child with different needs than most is a struggle.  I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can't go to all the birthday parties you want to.  All of those times are totally understandable.  You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don't.  How about all the cool equipment your sibling has? Huh?  I know you've climbed into that wheelchair or played with his super cool assistive technology toys!  How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body?   You get to experience a friendship that is like no other.  Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart.  They look at you with those beautiful eyes and know that you are there for them no matter what.  The bond you have is indescribable.  You are their sibling, their friend, and their protector.  Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand.  And I tell you what, we are so extremely jealous.

Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love?  They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello.  Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face.  Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you!  You do such a crazy amazing job helping your parents.  It surely takes a wonderful little boy or girl to do what you do on a daily basis.  I'm sure they tell you thank you, but sometimes if they don't just know THEY ARE BEYOND THANKFUL FOR YOU!

But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important.  You have lived a life that takes a strong heart and a strong mind.  You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what!  When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined.  You will be an awesome human being and you are going to change lives for the better....all because you were the sibling of a child with specialties.  Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling