If I could go back to the day of my daughter’s diagnosis, I would tell myself....

Below, is the letter I wrote two years ago on Facebook to announce our little girl was diagnosed with Autism. I look back at this post, which is a blessing and a curse of being a writer. My first impression is that this women was fearless. She came home right after her daughter was diagnosed with a lifetime disability and made the news public to all 204 of her family and friends by the end of the first day. She was unashamed, blatant, bold and above all honest. This was my post…

Almost from the first week we brought Gabby home, I knew something was different with my baby. She would cry for two - four hours straight at night, almost every night. I would nurse, rock, walk and bounce her till she passed out. The doctors had no clue. We did all the tests they could think of, and she was labeled a difficult baby.

By two she was hardly talking, but physically she was kicking all of our butts, as she grew stronger, it was harder and harder to control her tantrums and fits. We gave up going out to eat and soon we stayed close to home or parks unless we had two people.

By three she was in Speech and Occupational therapy, and she showed little to no improvements. She grew taller and her weigh soared to a whopping 40 pounds. We had more people than I can count tell me I needed to discipline my child or spank her, but I knew that just made the tantrums worse. We had to bear hug her and pat her back till she would calm down, and then it was like nothing happened. For the last two years I have been the lady in Wal-Mart holding down my girl while people walk by and see a 3 year old taking a tantrum.

Last week after running a bunch of tests Gabby was diagnosed with Autism. We are both relieved and devastated with the news. I know God has a plan for our life, and Gabby's as well. So for now we are going to be faithful and trust in him to lead us through the next chapter with our little girl. Prayers are welcome and appreciated.

Then I remember the feelings that went along with this post – and I was scared. Probably, the most scared I have ever been in my life. As I posted this message to my family and friends, I realize I did it because I was so afraid that if I did not say it out loud that day, I might never have the courage. I blurted it out for my family and friends to see because I was self-conscious enough, that if I did not share it, I felt it would be taken as I was ashamed of her or I was trying to hide it. I came right out with it and took the ‘loud and proud’ approach to sharing the news that my child was diagnosed with Autism. When in retrospect, I was devastated.

So devastated that I spent the majority of the next two weeks crying and heartbroken. Mostly because I did not understand what this meant for her and how we were going to manage. The not knowing if she would be okay is the most frightening part. Next, I spent a few days being pissed off and stressed and asking God "why us". Finally I crumbled for a few days and hid in the house. Then I finally got up. Not because I wanted to get up, but I had a husband leaving on a trip and a daughter to take care of. Just because I was grieving, did not mean I did not have responsibilities. So I got back on the horse you could say and I got on with our life.

I scoured the libraries, Internet and blogs trying to find out as much as I could about Autism. I would take care of my child all day and then at night I would be obsessed with reading and researching everything I could find out about Autism. I made appointments and kept up with her therapies and life kept going.

Looking back, if I could go back to the day of my daughter’s diagnosis, I would tell myself that it’s okay to grieve privately. It’s okay to not ‘shout out’ the news that your dreams you had for your child’s life are changing. It’s okay to not have a plan. Your journey is going to be bumpy and your are going to run on broken roads at times, but in the end you still have the most beautiful enchanted daughter you started out with. You are still going to have wonderful moments when she shocks you at her abilities and actions. Yeah, your dreams for her are going to be different, but they will not be less. Don’t worry so much, it’s all coming, just wait and see how wonderful it all will be.

Practice Makes Perfect!

The other day we had a few girls from the neighborhood over. I was sitting having a cup of coffee and talking to my best friend that happened to be the mother of one of the girls. I hear another little girl ask my best friends child, “What is wrong with Gabby?”

This is a moment that usually causes me to cringe, because even though the girls are just playing in my living room with toys and watching a Disney movie on TV, she has already figured out that my daughter is different. In spite of not having any meltdowns or tantrums, this new child has caught on to my daughter’s disability.

I hold my breath and wait to hear her response, she smiles to the other little girl and says, “Well Gabby has Autism and that’s what makes her special. She lives in a world that is different than ours…kind of like her brain does not work the same way.”

The other little girl says, “Is that why she is weird?”

 My best friends daughter laughs and says, “She is not weird, she just likes to play ‘make believe’ a lot and she really likes horses. You just have to play the things she wants to play, and if she gets rough you have to tell her mom. She doesn’t like scary movies and she cries a lot some days, but her mom is the only mom in the neighborhood that will let everyone come inside and she always serves snacks and drinks. Just give her some time and you will see the real her.”

Their conversation only last a minute, but what I learned in that minute is other children can accept my child, but they will not be fooled. They know pretty soon after meeting Gabby that she is unique. I have never been secretive about Gabby’s disabilities. I often speak about the challenges and triumphs of our little girl to others.

The truth is my child stands out from the bunch, she probably always will, but listening to this little girl’s definition of Autism, and then having them play with Gabby lets me know they will continue to spread awareness. When they run into another boy or girl in school they will understand a little better what Autism is. It’s not something to be scared of. Autistic does not mean they can’t be friends. It just mean they are unique individuals that want to play just like every other child. They just need a little patience and understanding and in time they will show you how amazing they really are.

This little girl took the facts a friend shared with her and played for the rest of the afternoon with my little girl. She ended up having a great time playing horses with my child and a few friends. Not all days go like this, some days my child is so upset with the other little girls, we have to close our door and send everyone home. But today we made a new friend and the girls got to play inside on a cold day, watching movies and playing with toy horses. My child got to experience normal play with a group of girls, and that is always my goal.  Despite Gabby being different, I am firmly committed to her being part of our community. I drag her to Sunday school and even though she does not make it in the class very long. Other children are exposed to her for a short while and that’s important for her and them. 1 and 68 children are affected with Autism today, my child may be the first Autistic child these kindergarteners get to know, but she wont be the last.

When dark clouds appear above my head and life with a special needs child gets me down, I force myself to push away the darkness and live in the light. I remember we need to go, not for Gabby or I, but for all the other little children struggling with Autism. I hear much too often Autistic mothers saying, “Its not worth the hassle to take her to the fair.” I would agree with them on that statement; it would be easier to keep the doors closed and let Gabby play by herself. That is where she is most comfortable and no outside influences will push her outside of her comfort zone, but if any child needs to be pushed, its an Autistic child. I cannot keep her in a perfect bubble or world for long. As much as I would like to keep my child safe and have no one question her or make fun of her, that is not reality.  So I push her to events in our community, church and school not because my child enjoys those events so much, but we are going for the Autistic children coming after us.  Just like the parents before us that pushed their children into our communities, so that she might have an easier chance in the future.

We have to keep going, pushing and being seen. We have to keep having conversations with strangers and our children’s friends about Autism. Putting her out in the world, making her uncomfortable is the only way I can see to make social interaction easier for her and others around her. Practice makes perfect!  So practice we shall.

For Matt at United

Today was a pretty good day. I played with my girl on a beautiful 69 degrees winter day. It was so warm and my girl go to run around in shorts and a t-shirt. She was thrilled, we had a few friends come over and I got to visit with my friend Ashly for a couple of hours.

Later this evening Gabby and I made a quick trip to United grocery to pick up a few items and dinner. We made it through the store and she was doing really well. I decided to let her have a pack of half a dozen cupcakes - you know the really sugar sweet ones with the red and blue icing. So we are pulling up to the line and a sweet girl checks me out. A tall guy named Matt packed my groceries and we had polite banter while he bagged my groceries and we were off. At United the baggers always walk you to your car, they load your groceries in and bring the cart back to the store. It's their thing and I have gotten used to it.

So on our way out I asked Matt what year in school, and he was and he told me he was a junior. This was his first job and he had to work till 10 tonight. I asked him what he wanted for Christmas and he told me some in-fashion clothing and new shoes. I took a look at long tall Matt and realized he was probably feeling pretty awkward at this age. He was tall and had broad shoulders with big feet and hands. His body had not filled out yet like a man and his face still bore a bit of teenage acne.
I could tell by his attitude he probably wasn't the coolest guy in school, but I doubted if he was completely unpopular.

He said "I just want my mom to stop shopping a JC Penny's and buy me some cool shirts like some of the guys at my school."

I said "Yeah, high school's tough. Their is always a few kids that get the in-fashion clothing and new cars when the hit 16. Then the rest of us are in a 10 year old hatchback trying to make it work with JC Penny's clothing, while they have Abercrombie & Fitch."

He turned his head sharp and gave me a crooked smile and said, "Exactly, I am stuck in a 12 year old pick up and my mom keeps on buying me clothing that is on sale and just not what I want."

At this point I had Gabby loaded in the car and I reached over to start my car up so the TV would pop on for her. I looked back at Matt who was leaning his tall frame over the front of the cart and I said what I wished I knew in high school, "Matt I am going to tell you honestly, high school is going to be such a small blurp on your radar. All you need to worry about is getting good grades, because trust me the GPA matters now probably more than the one you will graduate college with. Stay friends with the boys your grew up with that don't care about the labels you wear, and don't try to gain new ones that you have to stretch or bend yourself to be their friend."

He kind of smirks and says, "You think?"

I said, "Trust me; and above all else remember this...You never want to be the guy that peaks in high school."

He laughed and said, "You know, I have never really thought about it like that. I just want to be popular and get a girlfriend. I guess in the big picture it is just a short time."

I don't always get it right

My new neighbor Ashly is an amazing woman, different than me but the moment I met her I felt warm feelings towards her. She is a very real person, down to earth, God-fearing sweet woman. The moment I met her I felt like I knew her, our conversations were effortless and I loved how at ease I was with her. Since she moved in, across the street one month ago we usually spent a few hours talking a week and she has fit into our lives perfectly. She is a friend that I did not realize I was desperately in need of. She accepts my special needs child without question, and instructs her children that are a bit older than Gabby, to play nicely with her.

So last night her door was open, which in Amarillo means you are willing to accept visitors. Yes, very old fashioned, but thats what it means. Gabby and I went over to her house and I brought a hot cup of tea. We settled at the kitchen table and chatted while all the kids piled up on the couch and watched a movie. After the movie was over the kids got a bit wilder and I looked over to Gabby who has mounted her oldest child and scratched him in the face. A small little sliver of a cut appeared right next to his eye. I told Gabby it was time we got going and that she needed to get up and apologize to Trent.

Of course this causes her to have a major melt down. A part of me really believes that Gabby is trying to have fun and play the only way she knows how to. Then I come along, getting on to her because she was too rough. I believe she feels that I nit pick her to death about her social fumbles. Being a mother of a special needs child is like walking a tight rope at time. You want her to have a great time, but ultimately she always, without fail...messes up. She either plays too rough, pushes, breaks something or says a mean comment. I cannot ignore these despite my feelings of understanding that she is trying her best. I must correct her and have her apologize, but I know I am always letting her down in a way. I am telling her that no matter how hard she is trying, she just is not doing it correctly. My child is always apologizing and I hate that for her, but I cannot let her keep up with bad behaviors without correcting them. Its not okay to scratch a child or say mean things.

As I pick Gabby up she is crying hysterically. She ended up loosing her bladder and peeing on me and the wood flooring in Ashly's hallways. We apologize and she already has a towel willing to throw down. I take my extremely upset child across the street and back to the safety of our home. I get her bathed and in bed quickly. As I am rubbing her hiccuping back as she sucks down a sippy cup of milk I keep telling her "I know you are trying your best, and up until you scratched Trent you were wonderful." She finally finishes her milk and she is quite for a few minutes. She finally whispers "I am trying so hard, and I don't do it right." She starts to whimper and cry and my heart breaks. I know she is.

Life should not have to be so hard for my girl. It just shouldn't; an adult would have a hard time dealing with the social anxieties and difficulties that my child has, and she is only four. I realized that I don't always get it right as a mother. I should praise her much more than I correct her. Oblivious she does not hear me enough if she is depressed at the end of the night and is feeling she does not get it right ever. Today I am vowing to try harder with my praise, build up this little soul so she might have a better understanding of how amazing she really is.

As I wake up this morning my thoughts are on last nights conversation. I took a good look at my child and she is smiling and bouncing to Curious George on television. I realize that most days she wakes up like this - happy. I don't always get it right, but everyday is an opportunity to try a little harder and nurture this sweet soul. Hopefully tonight she will fall asleep feeling good about herself; that's my goal today :)

Finding the good.

Well that just did it, I am calling in the big guns and when I say that - I mean the pediatric neurologist. My child has barely left the house in the last six weeks. She basically is happy being a shut-in, although she will venture into the front yard and play with a few friends.

Today she had such a massive break down at therapy. She really never made it back to even start therapy. After she started to get so upset than she threw up, I realized that this has been happening a lot. I ask our Speech Therapist,  When was the last time Gabby actually made it to the back and completed a full therapy session."

She goes and looks and comes back and says, "Six Weeks!"

Then both her OT and ST therapist come to me and explain that they are at a loss on how to help Gabby. At this point she won't attend therapy let alone school. They explained that in all their years of being therapist they have never seen a child so riddled with anxiety and fear as my girl.

Believe it or not, this is not the first time we have discussed this. I have had several conversations like this before. They all believe Gabby is very bright, but cannot even fathom really getting started teaching her anything because she is so crippled with fear anxiety routine ocd they really are at a loss on where to start.

Most parents would be devastated by this news and don't get me wrong at a time - I would have been too. I just looked these sweet ladies in the eye and told them, "We will head back to Lubbock and get a medicine change. Usually when we have hit a wall with Gabby she has gained too much weight for the dosage of medication. We need a tweak and we need to try a few thing."

I grabbed both of their hands and said "Don't worry so much, we will work it out. It will probably get worse before it gets better, but we have time."

Its weird having to be the cheerleader for your child as well as her therapists. Autism sucks and it not only effects the ones inflicted with it, but those trying to help them.

I just really was not in the mood to fall into a black hole today, and I was not going to let two sweet ladies that are trying their best - to fall into it either. Screw that, every day does not necessarily have to be a good day, you just have to find a small part that is good in it.

I looked at my beautiful girl in the back seat, swinging her bare legs and humming to herself drinking her water on the way home. I thought to myself, so we might not be the healthiest mentally, but physically she is healthy, we have a nice home, my husband has a good job, good insurance, running cars, money in the bank and a good God that is present and faithful.

No no no, I am not going to let Autism dull my sparkle. Not today :)

Gabby had two friends come over to jump on the trampoline and watch frozen with snacks. What we lack in social skills, we make up for in amenities 

Definitely Better

Gabby is finally feeling better, right after she took this picture she backhanded me in the nose. Definitely better 

Feel Better Momma

My baby is having a hard day. We woke up crying and super distressed. Nothing made her happy on the way to school and cried all the way into her class. We used the bathroom and one of her teachers tried to get her to come in. After about five minutes I told her to go wash her face in the bathroom, go into her class and say hello and goodbye and then we would go home. 
She did what she was told, but was whimpering through the whole experience. I force Gabby to always try everyday even though I know we are probably going to go back home. After three straight hours of whimpering and crying. I broke up a antidepressant & anti anxiety medicine in fourths and crushed it and gave he a bottle. Turned off all the lights and played her favorite classical music. Lastly I rubbed lavender oil on her feet and put a lavender scent in our oil burner to make the house smell like a field of lavender. It always helps sooth her and calm me down. Good Stuff!!! She took a small nap and she is back up and told me the "black cloud is gone...feel better momma"

Little Riley

Last night after we were out for the whole day. Little Riley came over to jump with Gabby. I sent her outside with Allen and went to pick up a pizza. I get home a while later and Allen has set them up in front of the tv with a small snack. Riley asks me if she can stay for pizza and Gabby was right next to her with big eyes. So I said sure, and we all sat in the living room snuggling in a blanket and eating pizza. Allen bought Frozen and we started watching it.
In the beginning the parents go away and thats when Gabby started to cry in the movies and we had to leave. So I told Riley she might cry. Riley snuggled even closer to Gabby and then held up the blanket when that part came. A minute later she brought the blanket down and Gabby was none the wiser. Riley looks at me and says "I wish I could be her older sister, so I could help her with so many things.".....it was probably the first time in my life I wished we could keep little Riley because she is such a sweet little girl with a big heart. She is Gabby's only friend who seems to handle Gabby better than I can. She does all the talking for both of them and is always comforting Gabby when she has a moment. She wipes her little face and says "All better now" 

Amos Lee

Gabby has been in the bath for over an hour. I gave her a hair cut (under protest) and cut her nails (under extreme protest). Then I turned on Amos Lee's CD on low and I walked in to check on her and she was bobbing her head and swaying in the water. She refused to get out and told me to shush and go away. I think Gabby might have a love for folk, rock and soul music. Who would have thought 

Good Stuff

Therapy

Gabby had the "Best Day of therapy EVER"...she came home and it has gone downhill, but who cares :)

Yup Yup Yup

18 hours later, she has strep throat and she is still going strong. I just Benadryled her 

Screw Buspar

i swear I need to get into the drug business. Buspar side effects...sleepless nights (insomnia) & excitement & hyperactivity. Yup, Yup, Yup!!!!! -trying to fix one proble always causes two or three more. FML today.

Up all night

Up all night tonight, Gabby has a terrible cold and we started an anti anxiety that i'm 99.9 percent sure has a side effect of hyper or lack of sleep....I am going to die from lack of sleep ugh

Buspar

So we went to see the Autism doctor in Lubbock on Monday. They want to continue Gabby on the new drugs she is on because she is doing so well. I asked for something to help Gabby with Anxiety, because she still cries when I leave her at church for MDO. After almost two years at the same school and having to tent herself in class because she is so scared. 
The doctor started to look like she was going to cry and said "She is so young, she should not have all these problems" I was completely taken back by this doctors emotions. Laureen and me where keeping it together so it was strange this doctor was having such a hard time. I tried to remember that you have no idea the battles that everyone is going through and she might of had her own problems going on. It has become so foreign to me to have a doctor with real empathy. Not something we run across much.
Nevertheless we got a anti anxiety to add to the medicine. It usually takes about two weeks to see improvement or tell if it is going to work. As of last night and this morning I already see an improvement. No tenting this morning and a very happy girl. She is also wearing a night gown, which before the fabric made her crazy. So I am hopeful for these new meds.

Love him

Today is the day we are taking another long jaunt to Gabby's Autism doctor. I am hoping she can give us some insight on what happened during our medicine change and she can help us with some of the major anxiety we have going on with her. Hoping for an easy trip for Gabby.
So thankful for this big SUV that I can load up with movies and four wheel drive to get us out of here on this freezing morning. Thank you baby for making the ridiculous payment on this truck and doing it for our girls comfort as you continue to drive that old truck. We love you and miss you 

94

Fake Birthday

So Gabby woke up this morning and she keeps telling me today is her Birthday. Well she is about a month off, but she has never been this super excited about her birthday before. She told me she wants a whale, a baby rino, and a little girl. Plus a cupcake withe candles and birthday hats. 
Allen was trying to explain to her that her birthday was not for another month and she was getting really upset. I shut him up with the look, and he came up to me and asked me what am I going to do. Well like any good mother I am going to go to the store buy a few small presents wrap them up and get a cupcake with a candle and a hat.
Allen said "Now she is going to think her birthday is every day" ….I said "So what, Gabby asks for almost nothing, not once in a store has she asked for a toy or present, I am going to give her a impromptu birthday today. I told him the kid has the deck mostly stacked against her most days. If a Birthday Party is going to make her day. Then I will throw it for her.

Got It

Today was one of the first days Allen was off and gabby was at school so we could go around town and have a day date. Then we picked her up and took a late nap. So I am just folding a load if Landry and I started folding several pairs of Gabby's panties. I have been hesitant to announce it, but Gabby is fully potty trained, except for a night time diaper and it has been a week since she has waken up wet. I broke down and started crying, this was an 8 month struggle for Gabby and I. I feel very blessed she finally "got it".

Stuck in the middle

I just went to pick up Gabby from Church school. I was a little bit early so I was waiting outside her classroom and I saw her walk to the bathroom. Not wanting to break routine I let her go by herself. Well then I waited and waited and waited. Finally I saw a boy go in and come back out and no Gabby. 

So I walked in to find Gabby with her pants around her thighs with one of her 3 year old boy classmates trying to help her get her panties in the right spot and pull up her sweat pants. He managed to get them up over her rear. I said "Hey guys you need any help" …Gabby said "Hi Mom" and the little boy said "No, I was able to get her panties unstuck out of the middle and stuff her butt in"…This made my day