Thursday, November 12, 2009

Graces' Story

My Grace, that's what I call her, cause she and I have this bond that goes straight from her heart to mine! Through the years of blogging I have shared many of her antics, silly quotes and some of her struggles. Recently though I was thinking about how I have never really told "her story", so today is the day.

I knew about Miss Grace before she was born, I knew she would be spicy, full of energy and strong willed, was I totally prepared, no!! Grace began her journey in only the way that Grace could and that was on her terms, I was three weeks overdue with her and they still had to induce me!! I think she wanted it that way, you know, "go a head and make me!", I can just hear her now! As an infant she was full of smiles and even very young she would stick her tongue out at us, not just normal baby figuring out how it works, but intentionally sticking it out as if she was saying "Suckas!, you have no idea what you are in for!".

She was a great sleeper from the first night home from the hospital and continued in that vain until about 18 months and then things changed, but we are getting ahead of ourselves. When Grace began getting her teeth I noticed that her two front teeth came in with weak spots, well as she got more and more teeth she would chew on the railing of her crib and one day the two front teeth chipped. She eventually had to have surgery to place porcelain crowns on them to make them stronger, this was at 20 months old, two years later Grace bumped one of these teeth and had to have it removed, thus the toothless smile.

When Grace was about 8 months old we started teaching her sign language and she did really well with that but as the months went on and other children her age were saying lots of words, Grace seemed to prefer signing and not speaking. As she turned two I wasn't extremely worried but I noticed that her fits were becoming worse because she wasn't able to say the things she wanted to say and it was hard to guess. By the time she was 3 I really noticed that her speech was behind other kids and she was struggling with the whole potty training thing as well. Another difficulty was her sleep "issues", that was, that she didn't. She would stay up nearly all night playing, making HUGE messes and then be irritable the next day, this went on for a couple years. As the Mom, I just tried to encourage her the best I could and prayed that I would be guided in how to help her. I also began noticing more and more that she was VERY sensitive to certain things like, Hot and Cold, certain fabrics and noises. She spent most of her life with only diapers/underwear on because clothing only made her more irritated and uncomfortable. Some of her favorite things to do would be to stand against a cold glass window or stand in the fridge when the door was opened just to cool off. Grace was also EXTREMELY mischievous, getting into EVERYTHING and making huge messes where ever she went. Weather it was catchup or ranch dumped under the table, flour all over the house, eggs cracked on the coffee table, cutting her sister's hair, eaten crayons, erasers and paper strewn about, life has never been boring. And yet she is probably the funniest child I have known and for sure the funniest in the house, so she has managed to stay alive!

When the age of pre-school approached I began talking with several friends and family to see what the best option might be for her. I knew she would need someone patient and kind, to love her unconditionally and that is EXACTLY what we found with Mrs. Brough! It was months and months of work to get her into the pre-school program with the Clark County School District, and when her testing didn't go so well because she butted heads with the women giving it, I figured she was a shoe-in!! We actually began the process in April of 2008 but she wasn't able to start school (due to their slow paper work processing) until December of 2008! This would become a HUGE turning point for Grace in many ways!

For the first time there was a teacher that was almost as in Love with Grace as I am, she made her teacher laugh and I would get regular emails and updates of the latest "Grace-isms"! Grace LOVED school, riding the bus, and all the friends she was making. With the help of her teacher and through the process of getting her into the program we determined that Grace has something referred to as Sensory Processing Disorder or Sensory Integration Disorder. Children with SPD are often sensitive to sound, touch, sight, smell and taste, it can be all or just some of these things, but when I heard about this first from another family member I could see so much of this in Grace. I knew this is what we were dealing with and once I began doing some research on how it effects these children and the things to help them cope, it seemed like everything became much easier to handle.

As a family we work to be attentive to Grace's needs, while still expecting her to be responsible for her actions. She has really good days and not so good days, but she and I have made up songs to help sooth her and she is learning to remove her self from situations that are too intense. It is a work in progress and we are learning new and improved tactics all the time as well as adjusting old ones to meet her needs now.

As a Mom I cry lots and worry about the other kids accepting her. It's hard to hear the comments and notice the stares when we are out in public when she has a break down. She still prefers to not have clothes on and the constant comments about that can get old, I just feel like saying "You have no idea what you are talking about, if you only knew that Grace wearing clothes is the least of my worries today!" It's tough because I can't wear a sign that says "Please be patient with my child." so I just try to inform those that are working with her on a regular basis on how best to deal.

Grace is leaps and bounds better than she was even a year ago, her speech delay is almost unnoticeable and her "break downs" are getting less frequent. I don't know if she will ever out grow or be completely rid of all these things but I do know that I work hard as her Mom to love her and teach her the best I know how. She has a wonderful teacher this year who emails me, sometimes daily to let me know of Grace's progress and set backs. Moving was especially tough for her but she seems to be doing much better, when we first got to Colorado she would tell me how much she hated it here and how she wanted to go back to "our little house" in Vegas. Now, she tells me she loves that it's cold outside and can't wait for the snow to come!

It's hard to send your child out into the world/school/church, knowing that they will be made fun of or left out because of something like SPD, but Grace keeps smiling that toothless smile, singing her song and being her funny self! Me, well I just pray that each day will be a success!


GHFamily said...

What a nice post Marilyn. I never knew that Grace has SPD. You've been such an advocate for her which makes me remember why I think you are so great.

Angie Larkin said...

Grace looks great! I'm glad you have some answers. Thanks for sharing. I know how you feel (a little). My nephew has some issues and he peed in the parking lot at Walmart on my watch, buried his face in the cleavage of a fat lady at a pool (for the sensory funness of it) and rubbed the crap out of a black guy's fro! It's hard to inform the whole world that they need to be patient:)

Heather B said...

Those pictures are awesome. The last one is my fave. I didn't know all that about Grace! She is awesome. You've come a long way with her too, so that makes you SUPER AWESOME!

Kari Clark said...

I love Grace! She never fails to crack me up. I think that all kids have their own special set of things that they have to work through, if only Heavenly Father sent them with a manual on how we can best help them out - wouldn't that be the life? You are the best for being so awesomely patient - she is lucky to have you for a mom!

Amy said...

I remember Dad putting her on the front porch during one of her "moments". I told him to bring her in because the neighbors would hear her screaming and call child protection services. We miss her sooo much. Hurry Christmas. Does she want to go to Disney Land?

The Black's said...

I think I've talked to you about my son Johnny who is very similar to Grace. He is in a special preschool here in Utah. He doesn't have SPD but has a lot of the other characteristics that Grace has. I too have found it hard when people at church or in a store look at you like you are an awful parent but I find strength in knowing that he is a special child of our Heavenly Father. It is so nice too know that there are other mothers going through similar trials too. I worry about my son every minute of every day. The same worries that you have. Will he do well in school, will he have friends, will others make fun of him. But what I have found with Johnny is that he is an extremely loving and fun kid. All his teachers just love him. And it seems like your Grace is the same. We need more people like them in the world that can put a smile on someones face and make them feel loved. I know without a shadow of a doubt that these little kids are truly special spirits and that we are lucky to be their mothers but you already knew that!