Lessons that carried more than face value.

The BB gun was put into my hands when I was eight years old. Black birds were a nuisance to my papa’s bird feeders. He put them out so that he could watch the cardinals eat while he drank his coffee in the mornings over the kitchen sink. He told me when I saw a black bird shoot it and I’d get a dollar for everyone I killed, but if I hit a red bird I’d be in trouble. I would sit on the front porch with that Daisy propped up on the brick rail and sit patiently. “Don’t pul the trigger, squeeze it.” No it doesn’t matter much with a BB or pellet gun, but he was preparing me for the moment he put a real rifle in my hands.

He was teaching me how to shoot a gun, but there was so much more to it. He taught me patience, because I had to sit there and wait for the right moment so I didn’t hit a red bird. He taught me observance because I had to make sure I was shooting black birds and not thrashers. He taught me to persevere, because as much as I’d like to say I was always a good shot, I wasn’t. Every time I missed I sat out there a little longer until I got at least one bird that wouldn’t come back to ruin my papa’s morning routine. He taught me early how to do a job, do it right and get paid for it. Earn what you want and need. Most importantly, he spent time with me, taught me, encouraged me, was proud of me and told me he loved me. All of those lessons by putting a gun in my hand.

A skeen of yarn, a crochet hook, and just me and Nana sitting in the living room. She taught me how to make a chain first. Tie your first loop, hook the string, pull it through and keep repeating. Over and over again I’d hook and pull, hook and pull until I had a seriously long chain that looked nothing like a blanket or scarf or hat. Hook and pull. Then she stopped me and showed me hot to go back and double crochet. Wrap around, hook under, pull through twice. That that chain grew a little ticker. It still looked more like a rope than a blanket. At eight years old your attention only goes so far and it didn’t look like I’d have anything like the blanket that covered my nana’s lap. I retained the lessons and when I grew older I made little things like pot holders and place mats. Now I’m twenty-seven and making hats, working on a blanket, fingerless gloves and scarves.

My nana taught me a different kind of patience. While papa taught me to sit and wait, Nana taught me to keep working through even thought it looked like no progress was being made. She taught me to keep at it because I would eventually make something beautiful. She taught me to enjoy the quiet. Our family was so big and so busy all the time, we never really had time to appreciate the quiet moments. I think the most important thing she taught me was how something extravagant and beautiful can be made from one piece of string. These big, beautiful afghans, baby blankets, shawls, hats, even Christmas ornaments. They were all made from this one long piece of yarn at a time. It took time, patience and practice but it taught me that even and eight year old little girl could do great things with very little.

Bad things in life have turned into lessons too. They aren’t lessons you ever want to learn that way, but lessons are priceless no matter how they are delivered. My parents’ divorce taught me that great father’s are’t made of money and material. Great fathers are made out of effort. A parent shouldn’t have to be forced or guilted into spending time with their kids. When my parents split up, I learned that the reason my dad was around when I was younger, was because my mother would tell him he hadn’t spent any time with my sisters and me. When he left it was more important to find someone to be with than find a way to support his kids. He always turned the tables to say it was all about money with us, when we never wanted anything more than knowing our father would make time for us without saying something like “I don’t have the money to take you out to a big dinner.” “I don’t have the gas money to come see you.” “I don’t have the money to buy groceries.” If he would just say “Sure, come over and see me.” or “I’ll be there in ten” and then not say one negative thing about our mother then it would’ve been enough.

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In that same time my mama taught me what it was to be a parent. Not that she hadn’t taught me before, but I watched my mother drop everything to be the best single mom in the world. She supported her girls, she fought tooth and nail to give us what we needed and was there for us when we fell down. There was never an excuse of “If I had the money I would….” It was always, “I’ll figure something out.” “We can make something at home with what we have and pretend we went out to Quail’s Nest.” Then there were those times when we were up until 2am watching TV and a Steak n’ Shake commercial came on and she said “Let’s go get Milkshakes.” Just because. It was never much but it was everything. So when drama is brought up about my father, I think back to the excuses made and the negative things he says, claiming everything was about money when really it was about effort. His heart belongs to another family and that’s okay. That’s the life he chose and I’m better for it in my opinion. I think that entire section of my life taught me about strength I never knew i had. It taught me to let go, because many people judge me for not talking to my father. “He’s the only one you’ll ever have.” I’m grateful that he did his part in bringing me into the world, but I’m not here to be his crutch, or his counselor, or his confidante, or the buffer between him and my mother, and I’m not here to be his grown up. I’m supposed to feel like his daughter and that is something I felt less and less like as I got older. He never fought for me and I’ve come to realize that he never will. That’s not the kind of person I want in my life or in my son’s life. My son needs people who will fight and advocate for him, not claim that there’s only so much that can be done without money. I’m a better, happier person without my father guilt tripping me every day, blaming my mom and lack of money for the issues we have with one another. So those people can judge me all they want, but until they’ve learned the same lessons the way I learned them, their opinion is invalid to me.

There are so many more lessons I’ve learned that would make this an awfully long blog post, and I’m sure some people didn’t even make it this far. I’m sitting her lying in bed before I have to go to work this afternoon and thinking about things I’m teaching Braiden and what he’s actually learning from them. He learns so much differently than I did. He remembers so many things that you don’t expect him to. Like I came home from work and asked him how his day was. He told me “Daddy honked the horn. The car went whooosh and daddy said are you serious and the horn it honked at the car on the road.” And Tim looked at me saying that it lasted maybe two seconds with someone trying to come over into his lane on the way home. He told me February is red because of hearts and love and valingtimes (Yes that’s how he gets it out). I can’t argue with him, he’s not wrong. I just pray that the things I teach him while we’re doing therapy at home have so many of these priceless lessons that stick the way the car horn honking does. I want to be the best I can for him, and I want him to think as highly of me as I think of my nana, papa and mama when he’s my age.

Eight years…

I know people probably read my blog posts and think I’m insane because I talk to you like you’re reading this with them. Maybe you are, maybe you’re not, but everyone has their own way of coping right?

I’m a few days early, but you’ve been on my mind a lot. Another year has gone by and I still haven’t stopped wishing that you were here. Braiden was diagnosed with autism and as many times as I’ve looked at him and wished he could meet you, I never thought I’d look at him and hear you tell me what you told me about Danny. He’s no different than any other kid, he’s special and you’ll never love him any less. Its true, but I wish you were here to tell me yourself. You taught me well enough that I know what you would say for everything I face, but that doesn’t change the fact that hearing your grizzly old voice say it wouldn’t make me feel a thousand times better.

Megan, your little mean-mi, had a baby. She’s beautiful, papa. Oh lord she’s gorgeous and you would’ve doted on her and got in Nana’s way of making her too girly like you did with us and mama. She’s got the best smile and she’s as spoiled rotten as you made all of us growing up. And that spit-fire of a grand daughter you got so much joy out of watching grow up is an amazing mother. You’d be so proud of her. I think Katie spoils both of the kids as much as you would though. Buying them everything they want or reach for, taking them everywhere, or babysitting every chance she gets. I think you’d enjoy making Mama feel old now that she has not only one but two grandbabies. I can just see you giving her a hard time while you hold Emma and watch Braiden run around the yard.

Your grandsons-in-law, are amazing. I only wish you’d have gotten to meet Josh, the one who tamed that mean ass Mimi. They are both amazing fathers and husbands, they take care of us like you would want them to. Yea they have their moments, but we’re all human. If there’s one thing you taught me in life, it was that it was okay to mess up as long as you fix it and learn from it. If they don’t learn from it, we beat them. I’m sure that was in your lessons somewhere.

Eight whole years and its still painful to remember losing you. I think the sound of that flat line will forever haunt me. I remember so many great things about you, and that constant beeeeeeeeep it just wants to pull me back to sadness. I want to build so many memories with Braiden like I had with you, but they’ve been delayed a bit. I don’t think he’s ready to shoot a gun, but I want to teach him. He doesn’t know how to be quiet enough to go watch deer cross the yard and fishing just doesn’t work out well for him. I’m trying though.

I think what I miss the most about you was how you were there to be the man who protected me. I wasn’t afraid to have Tim meet my dad. I was afraid for him to meet you and mama. I know that’s not how things are supposed to work. You were in my life to show me what the man in my life was supposed to be like. Every father should give their daughters an example of the kind of man that they should spend the rest of her life with. My dad never set that example for me. When he fought with mama, he always blamed her. When he got caught cheating, it was her fault. When we were broke, it was her fault. When me and mama had our fights, he never stood up for me or the girls. He was never honest with mama when she was being crazy and he never fought for us. You… you beat us with switches when we did wrong. You rewarded us for good grades in school. You made us do our homework. You gave us a place to hide when you agreed that mama needed time to cool off. You told us when she wasn’t crazy and sent us back home. You fought for us when dad left. And up until you fell asleep that last day, you argued with me about being in school instead of visiting you in the hospital. You taught me how to fight for myself too. You also taught me when to shut up and let it roll because fighting was exhausting at times and it was just better to save it for a bigger battle. I miss you fighting for us. When random drama comes from your ex son-in-law I just wish I could hand you the phone and let you tear into him. But I’ve gone silent because the battle is too exhausting and the outcome is never going to change.

But that phone call. I really miss that phone call. I look at my phone a hundred times a day, but if I catch the time between 5:00pm and 5:30pm, I sit there and wish it would ring. Just to see your number pop up. “I love you, baby. Bye.” Five words could make my entire day better and there are days when I know it would be the boost I needed to get me through to the next. Tears that I know you wouldn’t want me crying are burning my eyes just thinking of hearing your voice again. Eight years since my last phone call and I still wish my phone would ring when I look at it around that time of day.

I know I say a lot of the same things every time I write for you like this, but its true. It never stops being true. I think Nana bought Tim old spice for christmas this year. He hasn’t opened it. I think he’s afraid of the emotional break down I could possibly have if he hugs me after putting it on. Its kind of funny actually when you think about it. You’re scaring him without even being here and threatening his life.

I miss you. I really do. I still have moments when I just talk to you when the world feels like its caving in. The first night it finally settled in what the doctors had told us about Braiden, I had such an emotional collapse. I prayed to God, I talked to you, I talked to Gracie, and I laid in the kitchen floor and cried. I talk to you when Tim and I fight. I don’t know how you and Nana made it through all those years of marriage sometimes. I also now understand the tuna sandwiches being thrown at the walls. Sometimes, it just that infuriating to love someone so much even when you’re mad at them. I guess that’s something else you taught me without me really realizing it. Huh. I guess you’re still teaching me along the way, even when you’re not here. Its just little seeds that have been planted waiting on me to find the fruit to harvest it.

Kiss Gracie for me.

I love you, papa. Bye.

Six months into our diagnosis…

For a first time mom, I never knew what to expect as my son got older. I knew at age three he should’ve already been talking like an excited teenage girl about every new thing he saw, but instead he was barely able to say “mama”. So many people would say things like “Well, Einstein didn’t talk until he was almost four and look at where he ended up.” So I would push it aside and try to get him to talk.

I put him in speech therapy and for a long time I didn’t see a difference until I went back and watched videos of him before when he could barely say anything at all. Then his speech therapist talked to me about autism. My heart shattered. The first time the word was mentioned to me was when he was having trouble potty training at his first day care. I started research then and I always thought he was fine, but others I talked to would send me things like “You know drinking diet coke while you’re pregnant could cause it.” Or “If you didn’t breast feed him it increases the chances.” This wasn’t stuff I read, there were things that people who said they loved me told me.

In July when we got our diagnosis, my husband and I cried a good part of the way home from Atlanta. All that stuff people said came back to me and I just knew it was my fault. When we got home that day, I was playing with Braiden and I knew he wasn’t any different than when we had left the house that morning. He’s my baby and he always will be.

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Now that I work at a photography studio, where I see kids Braiden’s age every day, I’m faced with seeing what he could be like. I see parents complaining that their kid is smiling too hard when they are laughing at the games we play with them. I hear parents looking at their typical five year old and asking “Why did you ruin all of the pictures smiling like that?” And I can’t say a word. I sit there and let them pick out their photos while I’m thinking of how hard it is to get Braiden into a camera room because the lights are too bright, the flash pop is too loud, the colors of the background bother him, or the smell of a newly painted background is too much for him to handle. I listen to these kids tell me about their birthday parties in clear, full sentences, and I watch them pose (for the most part) without trouble.

I love my son. God knows I would die for the kid, but it breaks my heart to see him struggle with telling me the simplest things. I put on a strong face, I’m that strong autism mom that can handle anything. Then I have days like today when I wake up and get Braiden ready for school and I can barely understand a word he says. I think back to those parents who put their children in front of my camera and the discouraging things they say to their perfectly normal, typical, every day five and six year olds. Then I just hug my son, kiss his cheek and tell him I love him and we’ll figure out whatever it is he’s trying to explain to me.

I have him for a reason. I believe that babies are angels waiting to be mothered and when a childless mother prays for a baby, God sends them the one that is going to teach them the most. I also comically believe that my papa stood right beside God in that little area where baby angels are waiting to be chosen, and he saw Braiden and pointed at him. “Give her that one, please.” I can just see it.

Its a daily struggle and some days are so much better than others. I keep my strong face on, I go mama bear when I have to, I advocate, I accept, I encourage him, and I pray that I’m doing it all right. I love my son and I will struggle through every single bad day to make sure he has the proper amount of good days.

Here’s to a Good Year

2014….

January- Braiden had his first surgery. The poor kid had his tonsils and adenoids removed in hopes that it would help his speech problems. Complications with him not eating or drinking after the surgery had us at the Children’s hospital for a couple of nights, but he did okay.

February- This horrible pain started in the back of my head and I had to call out of work for a week.

March- The pain didn’t stop and I went to the doctor after my husband demanded it and I heard words that made my blood run cold. “There’s a mass. We’re going to have to do some more testing to find out what it is.”

April- I had an MRI with and without contrast on my neck and brain that showed no results as to what this mass was. I was sent from my doctor to an ENT who looked at MRI and said there was nothing he could do for me except try antibiotics.

May- I started my second antibiotic treatment and the mass didn’t go away. I was referred to a neurologist. The neurologist ordered a bone scan to check for bone cancer in my skull.

June- My scan results were negative so the Neurologist recommended a nerve block to at least end my pain since they couldn’t figure out what was wrong with me.

July- The amazing people at the Pain Center in Macon blocked my occipital nerve and I could move my head without screaming in pain. I cried in the car all the way home because I had relief for the first time in six months. I could look over my shoulder at my son without hurting. Later that month my son was diagnosed with Autism. PDD-NOS to be exact. It was explained that he met all but one criteria for Asperger’s and all but one Criteria for PDD so he fell into that grey area in between, but he was high functioning autistic.

August- I was no longer feeling pain and the mass in my head was gone. My doctor said it had to have been a cluster of muscles contracting around the nerve. When I was able to move without pain, the muscles loosened and no more discomfort. Braiden started school the day after his diagnosis and we had our fired IEP meeting.

September- I quit my job as a vendor and started working as a photographer. I actually got a job I love, Braiden turned five, Tim and I celebrated eight years together, but between new therapies and my medical bills that had piled up we were drowning.

October- Finally a quiet month. No hospitals, no doctors, no IEPs, no fights at school. Still… we were drowning. When you get behind its so hard to get caught up.

November- I started working more and more. Tim and I hardly saw each other, Braiden missed me and because of money and finance issues, I had to start doing therapy at home because our co-pays doubled after open enrollment. Three different therapies, $50 a visit, one visit a week each. $150 a week is a lot of money when you’re barely scraping up enough to buy groceries with coupons.

December- I was able to work some overtime and get us caught up a good bit. We’ll still live from pay check to pay check, but maybe drowning won’t be a word I have to use in 2015.

I love my life. I love my boys. Times were hard in 2014. I was depressed and I spent a majority of it in pain, in tears or both. I cried when Braiden was diagnosed, I cried over our finances, I cried over the incredibly hard patches of my marriage. There were so many moments of much needed laughter laced into those really bad months, and I thank God for them because I might not have survived 2014 without them. If it weren’t for friends and family buying Braiden school clothes, helping to pay a bill here and there, giving me rides to the doctor, buying Braiden Christmas gifts, or just listening to me cry on the phone, I don’t know how I would’ve gotten through the year. All of those people who helped keep me on my feet, I’m blessed to have you in 2015 with me and my family. I love you all so much. Here’s to a good year with far less pain, less struggle and less tears.

To My Mama on Christmas

Dear Mama,

When I was a little kid, I never understood why Santa didn’t bring you presents and still you were so happy on Christmas morning. You were awake before dawn, sipping your coffee, and waiting for me to open my last present so you could go back to bed. Still you were so happy. You didn’t get presents, you got woken up after just going to bed, and you were dying to go back to sleep, but you were happy.

When Katie and Megan were old enough to enjoy Christmas and I knew who Santa was and they didn’t, you were still so happy. We were teenagers long before you started getting presents on Christmas and you never stopped smiling. Year after year you were up at the crack of dawn, sipping your coffee, fighting to stay awake and you were just as happy as we were that we were opening gifts.

I could just never wrap my mind around why you were so happy when you had so much that you complain about. These last six Christmas’s have shown me exactly what it was that I just couldn’t see before I became a mother myself. All that time that I was watching you sip your coffee and smile, you were teaching me that the joy of your children is all you really need. You always fought tooth and nail to make sure we were happy on Christmas morning. Only when I watch Braiden open small things like little hotwheels cars and jump up and down with all the happiness a kid can have, do I realize why you were able to wake up so early in the morning to watch us tear into our santa claus gifts.

So this Christmas I want to thank you for another lesson in being a mom that I never knew I was getting until I became one. You taught me that the entire world can be falling apart, but as long as my son is happy, nothing else should get me down. I love you so much, Mama. Merry Christmas.

Being his mom..

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In February of 2009 on Valentine’s day, I called Tim at work and told him that I was pregnant. Five months of doctors telling me I’d have to have a special surgery if I ever wanted to have kids and I was pregnant. On September 26, 2009 at 1:05am, one year and five days after we lost Gracie, my son was born. Braiden Dane Mitchel Jackson. When we’d found out I was pregnant we laid in bed one night with the big window open and we looked up at the sky from our little apartment to talk about baby names. I have two cousins that I grew up with. They were always like my big brothers and when we were kids we were super close. So I said Brandon Michael.. then I realized that I’d married into the Jackson family and refused to name my son Michael Jackson in a time when everything in the news was so horrible about the man. If I couldn’t have Michael, I couldn’t play favorites and have Brandon. “Well Braiden is nice… and we could go with Mitchel.” And just to make my child’s life complicated we gave him two middle names because my Husband and his father have the same middle name. So in a creative way, I still claim that he’s named after my cousins. ;)

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When I held Braiden for the first time I knew I was a mom. I saw his face (as ugly as it was that first moment) and I knew that there was nothing in this world that I wouldn’t do for that child. I remember that first morning after everyone left and Tim went to get us some food, I had time alone with my son. I held him, rocking him in the rocking chair and I knew that everything happens for a reason. God never shuts one door without opening another. Maybe Tim and I weren’t ready to be Gracie’s parents. If we’d had her we would’ve never had Braiden, and I couldn’t imagine not having Braiden.

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This past July we were given his Autism diagnosis and I saw my husband cry for the sixth time since I’ve known him. From Atlanta to Macon Tim blamed himself but then we got home and laid in bed with our son. That’s still our son. That’s the same kid we refused to name Michael Jackson. That’s still the same kid who’s first real word was “HEY!”. That’s still the same kid that said the word “Six” for a whole year. That is still the same kid who makes my heart melt when he says “I love you more” when he goes to bed at night. Yes, he has to have speech and occupational therapy. No, I don’t always understand what he’s saying to me. Yes, it is frustrating when the whole world is watching me calm my child down from a meltdown and thinks that I need to just spank him to teach him a lesson. No, its not easy knowing what he needs or what is making him panic. All of that is motherhood. I am a mom. I’m blessed to be a mom. I’m even more blessed to be his mom.

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So today isn’t just “Happy Birthday, Braiden!” In my eyes. Today is “Congratulations on your five year anniversary of becoming parents.” Every day I’m reminded of how hard it is to be a mother. The things that women give up for their children, the friends you find out were never friends because they disappear when you have kids, the high fever nights, the missed dinner dates, the financial troubles, every single little thing that we do to be there for our kids. Right now at the age of five I’m the center of my child’s universe. He’s happy to see me when I pick him up from school, he wants to cuddle with me when he’s sick, he wants me to sing to him before bed, he wants me to color and do crafts with him. I know that in a few blinks of an eye he’ll be too big for my lap, too cool for my hugs, and his night light will be a distant memory, but I’ll still be his mom. I get to be the proud woman who cheers him on in everything he does. A lot of people don’t really understand my excitement over little things, but I’m learning that every improvement is a step in a good direction. So if saying “Hello” to someone without being told to do so happens, I’m ready to throw a party. And ever since Tim and I decided that he is going to be our only one, its made every little improvement that much more to celebrate.

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Braiden,

You are amazing. “You are kind. You are smart. You are important.” I know to you the world is bright, loud, odorous, and sometimes painful. I know that I ask you to slow down a lot, I know I ask you to repeat yourself a lot and I know that you hate it when I try not to help you do something as simple as putting your socks on to see if you can do it yourself. I want you to know that I’m not perfect. I honestly don’t know how I’ve gotten you this far in five years. In truth it took me over four years to find out why I had so much trouble to begin with, for that I’m sorry. I do think you’re daddy and I are doing better though. We don’t have to discipline you as much because we’ve learned how to understand you and how to make you understand. You’re speech has improved so much and you are learning that even a few words are better than whining.

Its hard. Its so hard sometimes, but I want you to know that you are worth it. One hundred bad days are worth surviving for one hundred good minutes. I promise you that I will continue to stand up for you, fight for you, and be there for you even if you don’t want me to be. I will keep reading, studying, trying to understand what makes life better for you. For almost five years I’ve stumbled in the dark thinking that I was a horrible mother because I couldn’t make you talk, eat the right food, put on your socks, or teach you to ride a bike. I’m slowly learning that there are somethings that you just have to take your time learning some things. I focus on the things you’re amazing at doing like making things from play dough, putting together puzzles likes its nobody’s business, and figuring levels on games I’ve been trying to beat for months. You are strong, you are handsome, you are my son. I love you so much, I will never be able to explain what you mean to me. Just know that I’m here and I’m so proud of you and so proud to be your mother.

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My Little Puzzle Piece

In December of 2012, Dr. Vernon suggested that I take Braiden to see a childhood psychologist in Warner Robins. Braiden had just turned three that September and he still wasn’t really talking. My son was three years old and if he said ‘Mommy’ I would take a moment to thank God that I got to hear him call me that.

My baby sister went with me and they sat us in this little room alone for a few minutes before Dr. Baasin came in and talked to my sister and I about Braiden. She gave him a few cursory glances and somehow assessed that he was not autistic. Of course, Braiden was cowering in fear because doctors on are on his list of things that are bad in his eyes. She told me that he was young and probably only had a speech impediment.

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In January of 2013, Braiden started speech therapy with Miss Kayde Campbell at Developing Minds of Macon. He fell in love with her and loved going for the first few months, then he became aggressive and would scream and fight going. He would do fine during therapy and then when it was time to leave he would throw a fit again. Kayde is the sweetest person in the world, and she loves my son. I get a text about his progress, she sends me videos of their therapy sessions and she praises him like nothing in the world when he has a great day. I have never once seen this woman discourage him during a bad moment.

That trust in Miss Kayde was built and after eighteen months of speech therapy she told me that he had made some amazing improvements, which is very true. In eighteen months Braiden has gone from saying ‘Mommy’ and pointing and whining about what he needs to actually asking for things. While all the words don’t come out clearly and there are still moments of hand gestures, grunts and groans, he understands that I need words to know what he wants. Miss Kayde referred us to Dr. Rubin in Atlanta, a pediatric psychologist who specializes in autism.

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Miss Kayde and Braiden after a great Speech day.

I went home and I cried. I told my husband and he blamed me and my family for Braiden’s behavior. He absolutely refused to believe that our son was or could be autistic. That night pressed hard on our marriage and after hours of fighting and crying I thought I was going to give up. “He’s just spoiled, there’s nothing wrong with him.” “Its because your family gives him whatever he wants.” “Its because you think I spank him too much.” These are the phrases that were thrown at me the night I told my husband that we were being referred to an autism specialist.

I prayed. I cried. I vented to friends. I did a few rounds on the punching bag. I slept in my son’s room with him that night. We stayed up late watching movies, reading books, and singing songs. After I had gotten some sleep, I decided I wasn’t going anywhere until this doctor looked my husband in the eye and told him that our son was on the spectrum. Knowing that it was such a strong possibility, I changed the way I approached Braiden. If he freaked out, I tried not to get frustrated. If he wanted something I would kneel down on the floor and force him to slow down while guiding him through how to ask for what he wanted. When Tim saw that Braiden was acting better with that approach rather than us forcing him to eat things he didn’t want to eat, or him freaking out because he got the smallest little hurt, he started doing the same things.

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Because this doctor is the only doctor in our state that has this sort of speciality, we were on a waiting list to be seen in May of 2015. Luckily they had a cancellation and were able to see us July 31, 2014. When we pulled up to the building, Braiden immediately got scared because it was a hospital. He freaked out while they checked his vitals and freaked out when they put us in a room. After giving Braiden a moment to get comfortable,

The testing process for those who don’t know…

Dr. Rubin came in to meet him and Little Man freaked out. “There are no owies my hospital. We don’t do that horrible stuff here, Braiden. Here let me show you.” Then he walked out and got a small tub of play dough to show Braiden he could play. Once Braiden was comfortable, Dr. Rubin sent in a pediatrician to take Little man’s medical history as much as I could remember. We talked about milestones, first words, hospitalizations, surgeries, all down to the way he eats meals. She then did a quick neural exam, checking reflexes (Braiden couldn’t stop laughing at how she made his legs jump), watching the way he would walk and run, and made him follow her finger with his eyes.

Dr. Rubin came back in and introduced us to their speech pathologist at the center and played with Braiden for a few more moments. He watched what little man would make with his play dough, got high fives and actually got a few words out of him before he left us with the speech specialist. She talked to Braiden and did a speech exercise with him. She spoke to us about his speaking habits and the gestures he uses. After she wrote down some notes, she sent Dr. Rubin back in and he brought an occupational therapist in with him. Once again Dr. Rubin spent some time with little man and then left us in the hands of his team member.

OT just watched Braiden play with his play dough. She noted that he kept making the same things over and over again. I watched her doodle down some notes and she watched him very closely while she spoke to us about things he did at home that were repetitive in nature. It forced me to open my eyes to behaviors that had been right in front of me and the first psychologist had told me he was fine. That a diagnosis of ‘fine’ was something I clung to and in the moment I was reciting the things Braiden did like walk in circles, recite his alphabet over and over and over, or ask the same question twelve times or when he was stuck on saying the word ‘six’ for almost a year.

Three hours after checking into the office, Dr. Rubin came in and sat down with a smile on his face. “I’m going to tell you a little bit about your son.” I found this  little humorous considering that he’d known my son all of three hours, but I let the man speak. After he talked for twenty minutes and knew Braiden’s behavior better than I ever thought I could, I looked at Tim and his jaw was sitting on his chest.

“Your son is what we consider high functioning on the spectrum. He’s verbal, he’s not good at it, but he can communicate to an extent. He’s mobile, he’s got great energy, he’s happy, he’s healthy, but all the signs are there. He’s sensory impaired, meaning that he can slam his head against concrete (people that remember that??) and feel nothing, but then he can get a paper cut and you would think he got hit by a car. He smells stronger so strong stenches make him gag (its the reason he can’t go to the animal shelter to see the dogs), He hears things louder (he covers his ears when Tim plays the drums, the TV is too loud or public toilets flush). Things taste different to him so he is incredibly picky about what he eats. The starving him until he’s hungry enough to eat what you cook will not work on him, because what you cook doesn’t taste right to him so he can’t eat it. He probably eats bland things like chicken nuggets, fries, cheese pizza, mac n chess, plain pasta, bread. He’s probably really good at puzzles and has a memory like you wouldn’t believe. That’s why when you go to a doctor he thinks he will get a shot. He can recited movies and songs like its nobody’s business, but he can’t tell you what he wants to say all of the time. That frustration at not finding words or being able to explain his emotions is why he has tantrums and meltdowns. That anxiety builds up and he doesn’t know how to tell you what’s happening inside of him so it results in his form of a panic attack.”

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We are going back in February to go over his progress with Occupational and speech therapy, also to see how he does for the first half of the school year, being in a mainstream classroom rather than special education. I loved that doctor and his team. They spent time with us, they got to know my son, and they made sure through the whole process that he was comfortable and had minimal freak outs. The best part? They didn’t put my son on medications or suggest I put him on medications. His diagnosis is PDD-NOS. Pervasive developmental disorder-not otherwise specified, because he shows aspects of both Asperger’s and PDD so he falls on that middle scale.

We got in the car to drive home and my husband apologized to me. He apologized for all the horrible things he said when I told him we were going to see this specialist, he cried and told me I did everything right when I was pregnant. I didn’t drink, I didn’t smoke, I gave up caffeine, I ate more veggies than he could remember, I barely ate red meat, I didn’t eat seafood. I exercised, I rested, I did it all by the book. He hugged me and told me that I didn’t do anything wrong from carrying our son to raising him and he apologized for ever thinking that I did. Tim has easier approaches to our son now. He still gives him the ‘You’re a man’ tone because we’re not going to treat him SO different, just understanding that Braiden needs things explained differently helps get the point across better.

Still with me? Still reading? Excellent. I know its long, it was even longer while time was standing still and I realized that my child’s life is going to be different than I had planned when I first got pregnant.

Now I’m able to understand why we have such bad days sometimes. Now I’m able to understand that when I’m making meatloaf for Tim and I, I’m not a bad mother for making chicken nuggets, or grilled cheese, or pasta on the side for Braiden. I’m not spoiling him, I’m feeding my child what he will and can eat. When I don’t spank him for doing wrong the first time, but talk to him and explain what he did wrong, I’m not spoiling him, I’m giving him a chance to grasp what he is doing and to fix it before I punish him for something he didn’t understand in the first place. When he had a meltdown in public and I hug him close to talk really quietly in his ear, I’m not coddling him. I’m telling him that its okay, I understand that there are a lot of people, it’s a lot of noise, and it’ll all be okay. When I want my son to look at me, people think I’m crazy because I touch my nose with the tip of my finger, but he looks at what I’m doing and then he looks at my eyes. He hears me better when he’s looking at me. If he’s not, he’s hearing absolutely everything around him and I’m caught up in the mix.

So to the people still making the comments like “You know I think he’s just doing that for attention.” “He doesn’t look autistic.” “You know you should just spank him and he’d get the point.” “He’s such a mama’s boy.” “What’s wrong with him?” My son is different. There is nothing wrong with him. The world is more clear, louder, tastes funny, and feels harsher than it does to you and to me. He’s not trying to get attention, he has my attention and he knows he has my attention. He doesn’t understand social cues like conversation between adults. We’re working on it. He doesn’t understand sarcasm or metaphors, he takes what you say literally. When you say “Hold your horses” he wants to go looking for his cowboy hat. Spanking him? I’m pretty sure that’s my business and I will do so when it is called for and not a moment before. Mama’s boy? Because I’m the one who knows him and he knows that I will fight my hardest to understand what he is trying to tell me in that moment and every other moment. I don’t know about you, but I have no problem whatsoever being that beacon of light for my child. “He doesn’t look autistic.” When you can tell me what an autistic child looks like, then that argument will be considered.

Its been a few weeks now and we’re getting into a routine where Braiden’s clothes are laid out in the morning for school, his pop tart is on the table and his juice is in the fridge. He wakes up and dresses himself (Shoes on the right feet included), eats his pop tart, drinks his juice and turns on netflix until Daddy is ready to take him to school. We get home from school and he strips down to his underwear because he doesn’t like wearing clothes (part of the sensory overload) and he’s at home. I don’t see a problem with my son running around in his skivvies at home where he’s comfortable. He has a snack, we do therapy puzzles, games, coloring, homework, singing, or he helps me sort out his toys, and he helps me cook dinner or he plays a video game while I cook (great for the motor skills). When Tim gets home, we watch a movie or have an all out wrestling match that involves tickling and a lot of S-T-O-P!! Being screamed by my son when he’s had enough. Bath time (which is horrible since he hates having his hair washed) and bedtime where I sing three songs every night to him and his dog.

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That is our routine, when people come to visit and that routine is interrupted, Braiden has to adjust. It isn’t always an easy adjustment, but we aren’t avoiding having company because life keeps happening and he has to learn how to cope with things outside of his routine. But, that being said, don’t mock my son because he has trouble adjusting. He has a certain way of doing things and you’ve disturbed that balance, instead of laughing, or mocking him, you should jump in and show him how you can go with the flow too and be a part of his life. Make that adjustment work for you both. When we go to other people’s houses, I understand that my autistic child wasn’t part of their plan for the day. I deal with his meltdowns as they come. I don’t give him his way to appease him, I explain to him that things work different at other places than they do at home. I don’t expect special treatment, I just want him to be respected because he’s still the same human being that he was on July 30, 2014 before we knew his diagnosis.

That little boy is my world. I will move hell, heaven, earth, sky, moon and stars for him. The only difference between July 30 and July 31 is my attitude about the whole situation. I’m a better mother for knowing my son’s diagnosis, not less of one. My son is amazing through and through and he has a wonderful support system. Family members and friends alike are asking me questions to better understand his diagnosis and it makes me smile when people put in that kind of effort because he means that much to him.

Please visit this site, by clicking the big red button every day you help fund Autism Research, therapy and tools for children and adults on the spectrum. http://www.theautismsite.com