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Autism Speaks Walk 2010

September 13, 2010

Filed under: Uncategorized — Tags: — Erin @ 1:21 pm

We had an amazing time this weekend at the Autism Speaks Walk at the Bicentennial Mall. Autism Village had a booth at the resource fair before/during the walk, and it was wonderful to receive so much support and to be able to spread the word about the website.

I was able to meet parents, family, friends, and other service providers, and we all had the same goals. The feeling is something I will never forget. Being surrounded by families just like mine, who really understand the struggles, was an amazingly positive experience for me.

For all of the families and wonderful people I met, thank you for taking the time to be a part of this special day with us. For all of our supporters who helped to organize, set up, work the booth, or join us on our walk – Jordan, Brayden, and I continue to be immensely grateful for your dedication to our little family, and to such an important cause.

I am including some picutures from the event, and in the coming weeks I will be posting a video. (We had a videographer come out, and capture the day on film! How exciting!). In the meantime, thank you everyone for a wonderful event.

Setting up the Autism Village booth

Me, with some of our biggest supporters (Kristen, Jared, and Mandy)

Spreading the word about Autism Village

Team Autism Village

Brayden and Jordan (Brayden walked in his SpeechPath shirt because they have saved his life!)

Walking…it’s all for him!

Me, Brayden, Jordan, and Brayden’s amazing speech therapist Molly!

A Weekend In Pictures

September 7, 2010

Filed under: Uncategorized — Tags: , , — Erin @ 9:55 pm

This Labor Day weekend will be one that we will never forget. From start to finish, it was the best weekend we have ever had since Brayden was diagnosed. I know you realize, that I could write pages upon pages about what we did, but I am choosing instead to take you on a picture journey (with hopefully limited comments, so that you may experience the weekend with us.

First, on Saturday, we went with friends to the Nashville Zoo. Brayden was very excited!

Brayden, of course, loved all the animals. But his favorite, by far, were the giraffes!

We walked around the zoo, hand in hand. Every time he willingly puts his hand in mine, I cherish every second. I am so thankful for Brayden’s amazing OT, Jenny!

There were unexpected calm walks with Jordan, as well!

And Brayden even got to spend time at the brand new flamingo exhibit! Brayden really wanted to jump in the water with them!

After a long day, and might I add a relatively easy time being off of his schedule (which was a huge deal), Brayden was exhausted.

That afternoon, after a nap in the car, we bought Brayden his first tricycle! This will help Brayden work on his motor planning, balance, sensory issues, and a whole host of other developmental milestones.

Brayden really wanted to help put it together.

After a little work, they were finally getting the hang of it.

Brayden even tried on his helmet all by himself…Well, sort of!

After a little convincing, we were able to get him on it, inside of the house.

We never had one incident about the helmet, or about riding the trike. (He even attempted to peddle.) He loved every part of it, and is now asking to go out every day!

On Sunday, we went down to Centennial Park and spent several hours with family.

He sat on the steps of the Parthenon, watching skateboarders, which he thought was great!

Jordan and Brayden saw several helicopters in the sky, and both were equally amazed.

Next we looked at the ducks and geese, and Brayden wanted to jump in the water. But he was easily redirected, and was able to watch them swimming.

We made it to the playground (which Brayden asked for by name) so that Jordan could take Brayden down the slides.

We played football, we chased our shadows, and most of all we ran in the grass. And we were so happy!

We then went to see the train! Brayden loves trains – really he loves anything with wheels!

We took a break to sit and sing songs. Brayden decided he would tell me about all the different facial expressions we have been learning. My favorite is when he puts his hands on my face, just like in the book he learned it from, and says “LONELY” (couldn’t be farther from the truth with this little guy, but it sure is adorable!)

Last, but not least, we went to the sunken garden to enjoy the beautiful flowers and trees.

All in all, it was an amazing weekend. We had all of Monday to recover, and get back into the swing of things – just in time for another busy week. We are so thankful for all of the friends (really they are family) and family who were there to join us in a weekend full of little successes! I continue to be amazed at my son’s wonderful progress and spirit. From our family to yours, I hope your long weekend was just as enjoyable.

Honesty is…

September 2, 2010

Filed under: Uncategorized — Tags: — Erin @ 2:14 pm

Webster’s Dictionary defines honesty as, “a fairness and straightforwardness of conduct, an adherence to the facts”. Some of the common synonyms include: integrity, honor, truthfulness, and veracity. According to Webster…”Honesty implies a refusal to lie, steal, or deceive in any way.” 

I have always been known as an honest person. In fact, some of my family and close friends will tell you that this quality has haunted me for most of my life, and is at the same time what makes people want to be around me. I have always had the gift of being a tell-it-like-it is person. And my (at times brutal) honesty has won me praise or lost me relationships with people.

I am the person who would tell a girlfriend that she looked fat in a dress. I am the person who will speak up if I feel something is not right. No one ever has to wonder what I am thinking, because I speak with little inhibitions. I call it confidence of thought, others call it cruelty. But it is what it is. I cannot guarantee many things, but I can always guarantee that people will know where they stand with me (even if sometimes they don’t like what I have to say).

I have moved to a place in my life where I embrace this quality. Now, before you regard me as cold-hearted with little to no regret for the feelings of those around me, I will argue the contrary. I believe I respect people enough to tell them the truth. Especially with those that I care the most about…I will always speak the truth. Though sometimes a sugar coated word from a friend or family member might momentarily brighten a day – it certainly will not last. Lies never work.

My mother has frequently told a story about me to everyone we speak with about Brayden and his diagnosis. She says she used to wonder why I always had to be such a bitch. (I know harsh, right? But follow me on this.) She wondered why I had to be outspoken, loud, forceful, opinionated, headstrong. Why I wouldn’t except ‘NO’ for an answer. Why I had to be so brutally honest.

She wondered this for my entire life, never saying anything about it, (there’s some honesty for you) until after Brayden’s diagnosis when she saw how hard I had to fight for him and the services he so desperately needed. She saw me battle through the diagnosis, she saw me fight it out with the state when they tried to cut Brayden’s services, she has seen me recently fight again to get rid a harmful ‘therapist’, and even fight with the state when Brayden’s rights were violated. She has seen me push through, never accepting ’NO’ for an answer, always speaking up for what I believed was the right thing to do. With no hesitation, with no concern for ruffling feathers, she saw me battle. And in this she understood…

She understood why I never took someone’s word for it, why I always questioned, why I never took ‘NO’ for an answer when I was growing up. It was all in preparation for this. For getting Brayden what he needs, what he deserves, and what he is entitled to. (Hey, I’ll take being a bitch any day if I can get my boy what he needs!)

Honesty. I cannot stress to autism families enough how important this is. Honest with your therapists, honest with your case workers, honest with partners, honest with family and friends, and honest with yourself. Lie to yourself, lie to others, keep up a happy face, pretend like nothing is wrong, don’t speak up, and you will lose precious time, and lose yourself in the process.

On a lighter note, it seems Brayden has inherited my honest tongue. Today in speech, Brayden played one of his favorite games with his therapist. The ‘Pirate Game’ (as Brayden affectionately calls it) consists of Brayden sticking colored swords into slots in a barrel. Put enough swords in, or put them in the right places, and it triggers a pirate head to come shooting out of the barrel high into the air. (It truly is the joy of Brayden’s existence – he LOVES this game!)

Somehow, Brayden (and his photographic memory) has figured out how to trigger the pirate on the first time, every time. I guess he has memorized where on the barrel to stick his sword. So for the past couple days he has triggered the game on his first turn, hysterically laughing all the while. Today as the pirate bounded into the air, deep belly laughs came from my clever boy, as that precious, toothy grin spread across his face. He fiercely kicked his legs (a sure sign that he is really excited), and looked up into my eyes.

Between the baby belly laughs, and the kicking, in the midst of his joyful celebration, he said one word, and one word only to me…

“CHEATING!” he screamed as he began to laugh even harder.

How’s that for honesty?

Looking at faces

September 1, 2010

Filed under: Uncategorized — Tags: , , , , — Erin @ 2:40 pm

I can barely remember the days when Brayden would not look at my face, or my eyes, or me. I know those days existed. And though the memories of them no longer invade my every thought, if I try - I can still feel them, and the darkness that accompanied those days. But with the passage of time, they have faded, and I am thankful.

While Brayden’s eye contact in an on going ‘work in progress’ (that some days feels more like work), most days it is true progress. And with his gains and success comes the joy. The flooding of my soul, completely full with joy…and pride. Six months ago we were just beginning to hear his voice. And little did I know what we would pull out. The funny, precious moments were just beginning.

Brayden has been looking at faces recently. I know…it doesn’t sound like the biggest deal, but for a child who had little to no idea that people existed less than a year ago – it’s a huge deal! He is recognizing people, filing their faces away in his memory bank. He is noticing when people are talking, what they are doing, and he is looking at expressions.

Brayden’s speech therapist has a book that they just started reading, all about expressions. Picking up on the social cues involved with facial expressions can be an extremely difficult thing for a child on the spectrum. To notice that you are mad, or sad, or happy – they have to look at you, they have to process the information, they have to understand the concept, they have to care.

So after talking with my speech therapist, I made Brayden some cards. They are all different faces, of various ages, genders, and ethnicities, all with different expressions. I have begun showing Brayden the differences between various emotions from happy to sad, pointing out all the smiles and tears as we go. I have also been using these cards to test Brayden’s recognition of gender. (Again, a concept that can be hard to teach). As soon as I tell my child that all girls wear pink or purple, my husband pulls a pastel dress shirt from his closet. As soon as I tell Brayden you can spot girls by looking for long hair, a middle aged, rock band wannabee crosses our path in the grocery. So as you can see, it’s not as simple as it seems.

But in spite of the difficulties surrounding emotions and gender identification, Brayden is making his way, learning the complexities.  At the same time, he is also increasing his knowledge of facial parts. So when I tell him to look at the little girls teeth, and that she is smiling, he is picking up on what we say… and generalizing it.

Which brings me to yesterday.

In the recent days, just before I change his diaper, Brayden has been grabbing my face and begins pointing out all the things he sees. Not just the normal eyes, ears, mouth – but everything from teeth, to eyebrows, to chin. And yesterday as he traced his fingers over my face, in that moment I was so grateful. Grateful for his progress, grateful for his intelligence, grateful for the hope I continue to have for my baby boy. And as I smiled, with the pride of a mother who never imagined their son would say a word, Brayden delicately placed his finger on the space between my upper lip and nose, and with the voice of an angel said…

“MUSTACHE!”

In his defense, we now believe that Brayden does not associate this term with facial hair, but instead with the location on the face. In my defense, after asking my husband and several close friends, coupled with long stares in the mirror, I believe I am mustache free. (Though, I did contemplate calling a local spa immediately).

After recovering from the initial shock, I laughed…those hard belly laughs, that have been missing from my life, lost in the stress, and in the daily care, and in the hours spent working to get him to the point where he could accuse me of having a mustache. And Brayden laughed. He did not know about what, but I saw him looking at my face and the joy, and he couldn’t help but join in.

You never know…

August 31, 2010

Filed under: Uncategorized — Tags: , , , , , , — Erin @ 9:48 am

If you were take a quick look at Brayden, pass by us on the street, or spend a limited amount of time with Brayden – you may never realize that our son has special needs. This is one of the hardest things about autism.

This one fact makes it difficult for people to accept Brayden’s diagnosis, makes it harder for people to make allowances for Brayden or his behavior, and makes it easier for people to judge him or us.

Other than Brayden’s self stimulation, (arm flapping, spinning, etc.) there is little to no outward manifestation of his autism. Thus, people don’t know, forget, are ignorant, or refuse to see how this effects him.

It seems in the past year we have experienced almost every kind of ignorance, denial, and judgement, simply as a result as a lack of knowledge. Whether it be from strangers or close family members, it still stings, though we try not to let it.

As his mother, I wish I could protect Brayden. I wish I could make people want to understand, but I have learned a harsh lesson this past year. It is a nearly impossible task. In fact, I often find myself more overwhelmed at the prospect of teaching other people about Brayden and autism, than I am about teaching Brayden himself. (And you if you know us – and what I do with Brayden everyday – then you know how big of a statement that is!).

In recent weeks we have experienced many things that I could not protect Brayden from – first came the elevator ride, when a group of spoiled teenagers made fun of us as we comforted Brayden in the middle of an ‘episode’, then came the painful rejection of our family by my in-laws, and most recently, an insensitive joke about the inaccuracy of Brayden’s speech.

Each time, I wished that I could have shielded Brayden and us, from the stares, the laughter, and the cruelty. Every time we encounter ignorance, I always wish for a more understanding, a more compassionate world. I can’t help but think if Brayden had a physical manifestation of his disorder, would people do they things they do or behave the way that they behave? Every time I always come to a resounding “NO”.

Whenever one of these moments happen, I cannot help but think of my own past behavior. Have I ever been that woman in the store looking at a child who is screaming, thinking that their parents should discipline them better? Have I ever wondered why a seemingly ‘normal’ child would still be riding in a stroller at the age of five? Have I ever criticised in my head a child who appeared to be too old for a pacifier or a highchair?

I think one of the many lessons everyone could learn, and should learn is… YOU MAY NEVER KNOW WHAT OTHER PEOPLE GO THROUGH. Just because a child looks fine, why should that be a direct pass to judge, ridicule, or criticize? When did the world become so harsh, that judging children became a part of the status quo?

To borrow from basic psychology, we are all a blank slate. Everything that people do or do not do, to us or for us, writes upon that blank slate, turning us into the people that we become. This process begins for all of us from the minute we are born, and carries us through our entire lives. Most of us, however, have been blessed with the ability to forget.

I remember painful things that people have said or done to me over my lifetime, usually it is the most painful things that never escape my memory. Maybe it is the first time someone picked on me in grade school about the way I looked, maybe it was when my first love broke my heart. But there are many trivial experiences, that were negative, but they have been lost in my memory as time has passed. In other times, I may be able to recall that a person did something to me, but I can’t remember what they said, or an awful thing was said or done, but I can’t remember who said it. These experiences are common for most people.

Now imagine, that everything that was upsetting, hurtful, or negative stayed with you, forever. What if at the drop of a hat you could recall people, and what they said or did, EVERYTHING they ever said or did? What if all of your negative memories were just a thought away? Brayden is a visual thinker, and the more we see out of him we are all beginning to realize that he has an outstanding photographic memory. So he never forgets a face, he never forgets a toy, he can remember books word for word, even if he hasn’t seen them in 3 months. This amazing trait also means that he will never forget the incidents that are sure to come, the teasing, the rejections, the difficult judgments from people. These he will also carry with him.

I guess, that is why I so desperately want to protect him from the negative. I know I cannot protect him from everything, and I will not force him to live in a bubble, removed from the cruel world. I will try to fill his memories with more positive than negative. I will give him a strong foundation of close people who he knows he can be himself around (without judgements), and I will teach him how to get past the cruelty and ignorance of others.

I will also write posts like this, in the hopes that people will think about things before they say or do them, and teach their children to do the same. One word or one action has so much power. So will your words and actions be the negative that could damage, or the positive that could rescue?

Yard Sale Report

August 30, 2010

Filed under: Uncategorized — Tags: , , — Erin @ 1:39 pm

This past weekend we held a yard sale to benefit Brayden and the upcoming Autism Speaks Walk on September 11th. I am pleased to say it was a great event.

We had a lot of people show up in support of Brayden and our family – and I am excited that we were able to raise a little over $800.00 for two great causes. (Not bad for a days work).

We had so many people sympathize with us. I bet we were the only yard sale in town where people gave money even if they didn’t buy a thing. I can’t tell you how much it meant to have strangers support us, and identify with us. Several people who came to the yard sale had children on the spectrum, and it was nice to hear their stories of success, and to share ours.

I have to take time in the post to give specific thanks to the people who helped us with this event. Without the help from these people this could not have happened.

Kristen, Jared, Kelley, Stewart, Marla, Marcia, Darlene, The Searcy family, Hallie, Maranda, Elaine, Theo, The LaVoi’s, Julie, Colin, and everyone else who donated, participated, or visited! Thank you, Thank you, Thank you – from the bottom of our hearts!

Next big event is the Autism Speaks Walk on September 11th. If you happen to be in the Nashville area – take the time to sign up to be a part of our team. We would appreciate the support for our family, and specifically for Brayden!

How do you stop a moving train?

August 24, 2010

Filed under: Uncategorized — Tags: , , , , — Erin @ 9:50 am

Safety.

It’s one of the most pressing concerns for us, as parents of an autistic toddler. Brayden has the ability, desire, and curiosity to do almost anything – but he has a limited understanding of the concept of danger. To him scissors cut paper, but would never cut his hand. His impulse control, therefore, is an issue. When things like running, as fast as his little legs can take him, become a wonderfully exhilarating experience, I begin to cringe. Brayden would run right into traffic, sit down in the road, furiously kicking his legs in excitement as cars raced by his head, if we let him.

Autistic parents all over the world deal with these everyday struggles. It’s one of the things that I think about a lot. Will I always have to hold his hand, gripping it tightly? Will I always have to protect him from himself?

These questions play in my head, as we continue to work on Brayden’s impulse control. Currently we live in a maze of baby gates, and have a real fear that Brayden could decide to open the front door and run out whenever he wants – so we never leave him alone in a room, or if we must, we have a baby monitor with us at all times.

Thankfully, Brayden has decided to stay in the house, in spite of being able to open the doors. Thankfully, Brayden waits patiently in his room, even though he can open the baby gates. And thankfully, he no longer fights me when I grab his hand to lead him down the stairs.

Brayden’s impulse control means he wants to do everything as fast as it can be done. How does this make him different from any other 2 1/2 year old? Couple this with the lack of an understanding of fear, and little activities turn us protecting Brayden all day long. It may be a simple as holding his hand while going down the stairs, and it is as serious as making sure all the windows in his bedroom are firmly locked.

This weekend Jordan was on the receiving end of this impulse control issue, and it proved to be a learning experience for him. Brayden has been making fantastic progress with scissor skills. He can open and close scissors, cut paper, and he even understands the complexities of glue. But he does have issues understanding where to cut, and controlling the placement of his scissors in general. As I said, with no realization that the scissors could hurt him, we still assist Brayden so that he does not cut himself. Jordan was working this weekend on these skills, trying to perfect Brayden’s understanding of scissor placement.

As I understand, Jordan was trying to keep Brayden’s hands away from the blades, and in the process got one of his own fingers in the way. When Brayden felt something in the grasp of the scissors, he closed the scissors with all his might – with Jordan’s finger firmly caught between the two blades.

The good news – Safety scissors totally work. As Jordan reported, they did not cut his skin, but they were able to pinch it. Jordan also made it clear that he didn’t think it would have hurt as bad as it did, if it had not been for Brayden trying to swiftly muscle the scissors closed. (He is a true boy, after all!)

So with a pinched finger, and a slightly bruised ego, Jordan came to me to report the damage…as he put it, “Our son tried to cut my finger off today.” And after I made sure Jordan was okay, and then after I laughed a little, I continued thinking about safety.

Sometimes I feel like Brayden is a moving train, and I am literally laying down on the tracks in an attmept to stop him. We have many safety-centered goals on the horizon. Aside from impulse control, we aim to decrease his tendency to bolt without consideration for what is around him, and most importantly, we will be concentrating on Brayden’s understanding and response to the word “STOP!”. I also hope down the line we can increase his awareness of dangerous things, instilling just a bit of cautiousness, without making him afraid of everything around him. How do we do that?

I have no idea – That’s why I have amazing therapists, people! In time, they will teach him, and teach us how to teach him – they always do!

Until then, we will continue hoping Brayden will learn to control his impulses… before we move to regular scissors!

The Choices You Make: Is It Worth It?

August 23, 2010

Filed under: Uncategorized — Tags: , , , , , , , — Erin @ 10:30 am

When I first began thinking about writing a blog chronicling our family’s journey with autism, I knew that it would be a huge release for me. I also figured that there would be other families who identified with our family, and with our struggles. I knew that not every post would be happy, I expected that there would be some sad days. I am grateful that I have been able to write about so many positive things, as a lot of them have been happening lately.

But I never expected to encounter some of the negative things that we have. Specifically, Jordan’s family has had a hard time dealing with Brayden’s diagnosis, and the effects resulting from it. The painful, resulting actions taken by his family have been a big source of stress for us, especially during a time when we have felt like we can’t bear much more. Up until this point, we have chosen not to write about this component of our lives. We have done so for varying reasons. We wanted to protect them from any judgements, we held out hope that they would come around, we haven’t wanted to make anyone angry. I think somewhere in the back of our minds we wanted to pretend that their complete lack of support wasn’t happening, or was just a phase brought on by the grieving process.

Almost a year into our family’s journey, we have found that these wishful hopes for a quick turnaround will not be the case.

After a long discussion with Jordan, I left it up to him whether or not we would delve into this issue on this site. I know he thought long and hard about it. Ultimately, Jordan told me that this blog (and site) were designed with one purpose – to be honest. Honest about our journey, and all the good (and bad) that comes with it. So with this in mind, and with a heavy heart, I am writing with the hope that some good will come from this entry. Hopefully another family going through a similar situation will identify, or know they are not alone. Maybe it will change for another family how their extended family members approach the diagnosis process, or maybe, just maybe, my in-laws will read these words and let it sink into their hearts…

**********************************************************************************************************************************

When we went through the worst time in our lives – you chose not to be there. It still kills me every time I think about it. You chose this. Letting those words out breaks my heart, for my husband and son. Initially I was shocked. I thought, ‘How could they?’. Brayden was your only grandson, at the time. I knew deep down this was not his fault. And when he is old enough to understand, I will tell him that.

I thought at the time that you were scared. We were incredibly scared, so I could understand. I could understand that you might need some time – time to deal, to breathe, to change all your dreams and plans for our baby boy around in your mind. I am not sure that this is what you needed – you never told us. But we could believe nothing else - we didn’t want to believe that your lack of support was purely a result of the fact that you disagreed. I didn’t want to think that you were being selfish, but I will admit that I thought that, daily. I will also say I resented you for it. We had no time to process our own thoughts, we had no time to be selfish (we still don’t) - and honestly, I was angry that you were not there, that you were completely unsupportive, that you could look at our baby and choose to ignore something that was so obvious, or that you could choose to ignore our repeated cries for help.

I was angry every time I saw my husband and his breaking heart. I was angry when he cried because his parents left him in his time of need. I was angry when we had to bear the weight of this all without you. I was so angry that you, who had been a fantastic mother all your life, could just vanish when you were needed most.

This anger shifted somewhere in these months. I made so many excuses for you - Jordan and I both did. Maybe you didn’t understand, so we tried to educate you. Maybe you were afraid, so we gave you time. Maybe you were stubborn, so we were patient. Maybe you were being controlling, so we tried to set clear boundaries, healthy boundaries. Nothing worked, and we were bruised, dejected, and absolutely heartbroken.

Jordan and I cried so many nights, and thought ‘Will they ever come around?’. So after months of not speaking, when we planned to visit on Easter, we were hopeful. Now that we had the diagnosis, now that we were more educated, maybe we could turn this around, and get back to being a family. We drove to your house with hope in our hearts, but we were both so scared. I watched my husband wring the steering wheel tightly in his hands, until his knuckles were white, and I thought to myself – HOW DID WE GET HERE? I don’t know that Jordan or I have ever figured this out…

When we started talking, we hoped that you would listen, that you would read through the 3 inch binder full of medical records, and diagnostics from the 11 different doctors, and the months that you had been missing. We hoped that you would at least read it before you made up your mind, but that was not to be.

When you started screaming at us, I was thankful that Brayden was napping, and then I was immediately broken. We came looking for the unconditional love and support from a mother, a grandmother. We came trying to give you that chance to finally get it. After the numerous times we had discussed the tumultuous relationship with your own mother-in-law, I believed that you would hear us, and see the pain in our eyes, and maybe see that you had become what you didn’t want to be. But instead you screamed, and banged your fists, and accused us, and blamed us. We still like to think that you didn’t really mean it, but I began to believe in that moment that we would never get through to you.

We left your home with our hearts barely intact, and in the weeks following we tried to gather up the pieces for Brayden. When you sent the package in the mail, with clothes for Brayden, two weeks later – we were more than hurt. We were insulted. How could you not support us or Brayden, but then send him two outfits, like nothing had ever happened? You rejected us all, and you sent clothes - It was truly absurd. The clothes still hang in Brayden’s closet, tags still in tact, as a reminder that love doesn’t come in the form of material possessions. I told you this in the email I sent you – you can’t fit what Brayden needs in a box.

So we existed for the next four months. And though many hurtful things occurred in this time, we concentrated not on how painful the loss of an entire section of our family was, but on our son, his recovery, and his well-being. We spent a lot of time alone, wishing we could pick up the phone and call you. But slowly, over the months we began to be able to breathe again, the pain wasn’t so fresh, and other people came into our lives to fill the giant hole you left. They gave us the support we needed, and we were happy, and coping, and we were okay.

When you didn’t call when our nephew was born, we expected it. We knew this all had sunk to a low level. We were prepared this time, and it didn’t sting like you wanted it to. But when you did tell Jordan ‘Happy Birthday’ last week via a text message, I was grateful that my own family and our friends were there for him. I knew it was hard for Jordan, being the first birthday with not so much as a phone call from his family. And as we sang Happy Birthday with a room full of people,  I looked not to Jordan, but to Brayden – thankful that he is still too young to realize that you are not here. Thankful we have more time, to figure out what we are going to say to him…

The next day when you texted Jordan asking him to call, he did not want to call you. He said he knew it would not go well – he didn’t want to go through it again, especially when we were just getting to the place where we felt full and happy. I told him we had to give you every chance to apologize and jump back into our lives. We had to provide you that opportunity. So Jordan picked up the phone…

Currently it is all my fault, and truthfully, I understand that. Someone has to be the villain. I am sure that I am how you justify your actions now, alone in your room, when you think about us – I know you believe this is my fault.

Jordan is brainwashed, I am manipulative, I planned this – all of this, I am plotting to destroy your family, behind your back, behind everyone’s back. Jordan must be miserable, Brayden must be miserable, and all of it – everything is my fault. I accosted your family, telling them they would have autistic babies, scaring them. I tell Jordan everyday, that you don’t love him, that no one loves him, but me, and because of this, and because of Brayden, he is trapped. I am sure you are disgusted with me, ashamed that you eldest son could ever fall into the traps of such a bitch – to put it mildly.

I wish you wanted to see the truth, instead of creating these lies in your head. I wish you took the time to see the truth that is staring you in the face. Brayden is happy, he is finally a part of this world. He is with us, because of me and Jordan, and all our hard work. Jordan and I are so happy, and in love, and stronger in our relationship than we have ever been. Together we have conquered, and still conquer, hell. I believe we are more in love than we have even been because this, all of this, has made us strong. We have picked each other up, been each other’s rock, and together we have the best son in the world. I am thankful every day for you – you gave me the love of my life, and because of him I have our incredible son. I do not hate you. Though I think you are being selfish and stubborn, I believe you know no other way – and I feel sorry for you. I feel sorry that you miss out every day. That I can’t call you to tell you how Brayden is doing, or how we are doing. I feel sorry that a person who values family so much is watching hers crumble around her.

I wish you wanted to learn, I wish you wanted to adjust. I wish instead of talking about how your house is going to be controlled or invaded, that you wanted to learn why we have to make the special accommodations and exceptions for Brayden. I wish you wanted to see me, not as the controlling witch that has hijacked your son and grandson, but as the loving wife and dedicated mother who is moving hell to give your family the best life we can hope for. I wish you would choose a different path.

I hope that you don’t look back at your behavior and wish you had done something different. Maybe you won’t – but I think it is important to ask one simple question. Is it worth it? Is it worth it – when you miss the moments and the smiles, and the holidays and vacations, when you miss out on sweet hugs and laughter – Will being RIGHT be worth it?

With or without you, we will be okay. We will not back down from our requests. To be a part of our lives you have to accept us, ALL OF US. You will have to make exceptions and accommodations that you do not want to make. You will have to push aside your selfish stubbornness, and replace it with unwavering support and love. You will have to educate yourself, and you will have to be willing to spend the time, the hours and hours of time, learning about what your grandson needs.  You will have to let everything else go…all the negative, all the guilt trips, all the fear – and put some real effort into repairing a severely damaged relationship.

If you are ever ready, we will be here. We always have been. But as I have said many times to you…You are now responsible for where this all goes. If you want to fix it, if you want to try, you need to contact us. You need to make the choice to be a part of our lives. I remain hopeful that you will see the error of your ways, I remain hopeful that you will come to your senses, I remain hopeful that you will realize what you are doing to yourself, your son, your grandson, and to me. I remain hopeful that you realize what you are missing out on, and that you will decide to start acting like a family again.

We’re here whenever you are ready…

Today I am grateful for…

August 16, 2010

Filed under: Uncategorized — Tags: , , , , — Erin @ 2:45 pm

I know sometimes my patience might wear a little thin…

It’s in these times I must remember how precious you are to me, and that all of the struggle, all of these fights, they are all for you.

This past year has been a hard one. We went through so many ups and downs. It started with the wondering, the questioning, and even the days where I don’t think I was strong enough to admit.

The fear eased when I met your therapists, and when I saw they they understood you, and that they understood me, and that they were going to help us.

They have helped us it’s true, but you have helped even more. You have been a joy, with a wonderful personality. Even on the days when you screamed, we all knew it was because you knew no other way.

We saw your personality creep out, and we still see it, but now it explodes. And whether it is your funny moments or your crocodile tears, I am so grateful that I am getting the chance to know you – and everyone of your moods.

When it was difficult to hold your hand, because you pulled away, I hoped you would hold my hand in time. I am grateful now that you trust us. And everytime you willingly place your hand in mine, I stop and pause knowing how big each one of these little moments are.

It was hard to watch people fall out of our lives, out of touch, unable to give us the support we craved, but it was these difficult times that made our little family so strong, and bonded us together. We now know we can handle anything. I am grateful for all of your ‘aunts and uncles’ that have become our family. You will know the meaning of a solid family because of these big-hearted, wonderful people who have made it a priority to be active participants in your life.

I am grateful for your dedication, and that my own has continued to hold strong. Together we make a dynamic pair, and we can overcome any obstacle put in our way. You have shown me that nothing is too far out of reach, and you have taught me that I can do more than I ever thought.

I am grateful for your strength, it picks me up when mine is lacking. I am grateful for your wide toothy smile, it can brighten up any day. I am grateful to hear your sweet words and your voice, even if it is telling me “No!”.

And when I have a tough day, I am grateful that my every move is dedicated to you. Because this hard, hard work is not without its rewards. They come in the form of hugs (now with arms wrapped around tight) and cuddles before we go to sleep. It comes when I see the changes everyday, and I know you are happy. I am grateful to know that you are happy.

I am grateful to spend my days with you. Even when I feel worn out, even when you cry, even when you won’t listen to a word I say – I am grateful for all the time we spend together.

We have some fights ahead of us, but I must never forget I have the best partner in the world. Your battles will be mine, and together we will celebrate everyone of those little successes.

I am grateful to have the privilege of being your mother. I know I will always recognize how important that job is. Thank you for that realization – you gave it to me!

I am grateful for the ability to slow down, and relish the every day ordinary moments. You make me so proud, and you must never forget it!

You give me every reason to be confident when things seem so unsure. You give me the ability to keep pushing with your desire for knowledge. I will always be grateful that you want to know more, that you will always keep searching for answers with me by your side.

I am grateful for all of the wonderful things you have taught me about life, love, and true happiness. And I am grateful for what you will keep teaching me everyday.

What can I do to help you?

August 11, 2010

Filed under: Uncategorized — Tags: , , — Erin @ 4:31 pm

“I’m sorry.”

It’s the most common response that I receive when I tell someone that Brayden has autism. It doesn’t matter how someone says it, and it doesn’t matter how genuine their intentions are when they say it – sympathy is a nice thing, but it truly is not what I need.

As a parent of a two year old, I am often overwhelmed. As a parent of an autistic two year old, well – overwhelmed doesn’t begin to describe how I operate every day. Do I hold it all together? I am happy to report that in spite of all the stress, worry, and anxiety concerning my child’s future – I am making it, and to this date I have yet to lose my mind. That being said, I can’t exactly lose it…who would help Brayden if I couldn’t manage it all. So currently, I have no choice but to do it all – regardless of my sanity.

I know I am not alone, and though I may be more comfortable than most talking about how it feels to have a child on the spectrum, I know that this feeling of teetering on the edge somewhere between composed and collected mommy and overstressed/overworked mommy is a balancing act shared all over the autism community. And while plenty people express their apologies, condolences, and sincere thoughts, I grow frustrated that very few people (in my experience) ask what they can do to help. And even fewer people actually do things to help.

Why not? Maybe it’s because a lot of people have other important things going on in their own lives, maybe it’s because they don’t want to overstep boundaries, maybe they think they can’t help, maybe they’re uncomfortable around my child, maybe they think they are doing me a favor by not helping, so that I can get used to what the rest of my life may become. Maybe they just don’t care because it doesn’t effect them, or their friends, or their neighbors…yet.

I could throw out a dozen or more ‘maybe’s’ that have crossed my mind since Brayden got diagnosed. But I am not sure that any of them really matter…the bottom line is – There is something you can do to help!

What can one person do? Well, I think you will find if you take the time to go out of your way to do something for a family with a child on the spectrum, it will be a rewarding experience, and I can guarantee that you can make a big difference in the lives of people with very simple things. I have compiled the following list of possible ideas, which I hope will spark further ideas, and maybe even some action.

1. Care! Care enough to listen, to be a shoulder to cry on, or be that someone that an autism parent can call when they want to celebrate the everyday small victories. Care enough to educate yourself on autism, and learn about what families like mine go through every day. Care about the children, and care about something that may not have a direct impact on your life. We all need someone – it’s a natural part of the human condition. Don’t ever assume that people have a built in support system with family. It has been my own personal experience, and I have heard it echoed all across the autism community, that family often have the hardest time dealing with, accepting, and supporting a diagnosis and the resulting effects.

2. Spend time with us. One of the most frustrating things about an autism diagnosis is it is isolating! Very often families with children on the spectrum have a hard time leaving the house.  This happens for a variety of reasons – the child may have problems transitioning to new environments, safety concerns, or just sheer exhaustion. Other families don’t want to deal with the judgements or rude comments from people in public places who don’t understand the complexities of autism. Whatever the reason, spending time with a family can make them feel more connected to the world, while also helping to ease the feeling of being a prisoner in their home.

3. Learn. So many people that I come into contact with have no idea about the levels of struggle and stress that accompany a diagnosis of autism. Even more people do not know what autism is, how it effects children, and the ways to ease some of the difficulties. I could point you to millions of websites, books, and experts - they are out there! But I think the best resources, without question, are the parents themselves. The spectrum is so varied, and information can be so overwhelming. I believe that you can gain much more individualized information from speaking to a specific family that you want to help. Think about it this way… the time you spend finding out general information on the Internet, could be spent finding out specifically what you could do to help a family. (As a side note, I do believe that everyone should be educated about autism in general – but for this list about taking action, I don’t want anyone to be glued to a computer all day. It is very easy for this to happen because of the wealth of information out there.)

4. Bring your child around mine. Autism sufferers have difficulties in social situations, and they only way to learn about what to do and what not to do is to provide them with opportunities to socially interact with others, especially peers. A lot of people believe the myth that all people with autism are violent, uncontrollable, head-banging maniacs. This is just not true. Even head-banging serves a purpose, and I can guarantee that it is not a violent one. It may be a different experience, it may be overwhelming for you, or your child, but I believe that it is our responsibility to encourage and promote understanding with our children about all differently-abled people.

5. Roll up your sleeves. When a baby is first born, the new parents are showered with people offering to bring food, wash dishes, do laundry, clean, vacuum, etc. These simple tasks are ways to make new parents lives easier while they adjust. Though autistic children grow up, and many become functioning self-sufficient adults, some do not. Regardless of where a child is on the spectrum, regardless of how severe or mild their autism is, I can almost guarantee, that their family could use some help with one (or all) of these tasks. Just think of it this way…If you had to make a choice between doing dishes or doing one more hour of therapy that could make a difference in your child’s ability to live an independent life, what would you choose?

6. Offer to babysit. This one is not as simple as it sounds. To complete this task you must first become familiar with the child, his/her habits, strengths and weaknesses, communication style, safety concerns, and the myriad of rules/regulations that are involved in their care. Don’t kid yourself…this is not an easy job. I recommend going to the family’s home before you plan to babysit for several hours, and watch the child with their parents in their normal routine. I would take notes – they will come in handy. Realize that a lot of parents with children on the spectrum will have a hard time leaving their children with babysitters, simply because there is so much to know – you have to make them feel comfortable, and the only way to do this is to go above and beyond to earn their trust by learning about what to do or more importantly, what not to do.

7. Spread the word. After you have checked with the family to make sure they don’t mind you sharing their family’s journey with autism, tell everyone you know. We live in a time where technology has made sharing information and connecting with large groups of people very easy. Tools like email, Facebook, and Twitter can be used to share stories and connect families to people and organizations who can give them support. You never know what friend of a friend could have the ability to do something drastic to improve the lives of families. Let your friends, family, churches, and social groups know that you know of a family in need.

8. Open your wallet. Recent estimates cited the lifetime cost of care for an autistic person to be 3.2 million dollars! Most people also do not realize the financial strain placed upon families who are trying to provide the necessary early intervention and therapies to their children, in an effort to combat the negative effects of their child’s autism. Frequently, stories flood the news of families who go bankrupt trying to pay for these therapies. Especially in states, like Tennessee, where there is no insurance mandate for therapy coverage, therefore no insurance coverage at all for these medically necessary therapies – families need your help. Currently, our family pays near $3,000.00 a month for therapies completely out of pocket. For many people, in these hard times, giving money does not seem feasible, but if 100 people gave $20.00 – or if 1,000 people gave $20.00. You get the idea…

9. Become involved. Whether this is helping a family raise money for therapy, volunteering with an autism related organization or event, walking/running in support of a family or child, or making informed decisions about things like insurance reform, health care, or education rights, the more involved you become, the bigger impact you can make. There are so many opportunities out there, and these simple acts help families feel less like they have to fight on their own.

10. Become a teacher. Once you have knowledge, it is up to you to share this knowledge with others. By sharing your experiences with autism, you can help create a more compassionate and understanding world.

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