I Don’t Search For A Cure

There is no cure for what is not sick nor can you can you fix what is not broken. That sounds really simple. It is complicated, this motherhood job of mine. I am compelled to protect my children, but the world is at times stacked against me. My oldest is bipolar with more than just a touch of ADHD. The second child was landed with that same diagnosis but believe me when I tell you those two are night and day! The third son he seemed to be hit the heaviest with the severe autism, severe MR, and yep go figure ADHD as well. The fourth son is only six and I hate to think he will end up diagnosed with anything other than being a goofball like his mom. So being mommy in my house calls for something more than the average mommy abilities.

We go to countless doctor appointments, endless pharmacy runs, and the money we spend on adaptive equipment can really take a toll. I have to be honest and admit I have moments I think I’m falling all apart. Happy to say those moments are few and far between because being a mommy is something I always wanted to be. I’m not disappointed that my kids are who they are (I believe God doesn’t make mistakes!). Even though things can get hard I never find myself ready to quit (scream yes, quit no). Bad days may come but they’re gone just as fast.

This is my life and these are my strapping boys. I wouldn’t have it any other way. My oldest had the most difficult time behaving in school, but he graduated all the same! At present he is combing over what trade schools interest him the most. My second son learns at a bit slower pace, but he’s an A B student  with a near perfect behavior record in class. He has his future planned out all neat and tidy. My third son may be autistic but he brings so much love to my life. Just when I think I’m all out of what it takes he reminds me why I can’t give up. My youngest is six so you know he’s all over everything all at one time. Its sheer chaos but it is my life and I wouldn’t change it for gold.

I don’t search for a cure because we don’t need one. Maybe having so much going on at the same time is the only way we would have it. I can’t wrap my mind around quiet; I like all this noise. I don’t mind my son getting up almost every night long before the dawn because I’m a raging insomniac; so meh it’s okeydokey. I don’t regret having to advocate for my oldest sons education because I learned how to fight a well oiled machine. That same fight has prepared me to ensure my second son has a great education even with his special needs. Having Christian in my life gives me an unconditional love that most people only dream about. And the youngest? Well who doesn’t adore a six-year-old with big fatty cheeks!!

We don’t want a cure, we don’t need a cure, we want awareness, and we need acceptance 🙂 Just smile when we walk past you. Don’t offer advice if I didn’t ask you for any. Support the people around you who have a handicapped loved one and ask yourself if there is something you could do to REALLY HELP them. It is doubtful that a genuine cure will ever be found. If we harness all our energy and time imagine how many great things we could achieve in this world together.

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I would rather you asked.

Nothing frustrates me more than being at Wal-Mart with my son Christian and having people pretend they’re not staring. Just like the title of this blog, I would rather you asked. I don’t mind your curiosity about my son, after all it’s just human nature to be curious. I DO mind when you look then quickly look away, hoping I won’t speak to you. Believe it or not when I’m out shopping making a new friend isn’t high on my to do list either. I’m not going to disappear and my son isn’t going to stop being autistic so let’s find some middle ground shall we?

I’m all about awareness and maybe you’re unaware of autism. As an ASD(autism spectrum disorder) parent you may might think that’s not possible. The truth is there are some people who are not impacted by autism. Some people have heard the word but don’t have any clear idea what autism is and that’s ok. It’s ok because finding out is very easy to do. My son in particular is severe and he is also a dual diagnosis, adding severe mental retardation into the mix. He is nonverbal but that doesn’t mean he’s quiet! Lol actually he’s quite animated in noise making believe me. I can’t tell you how many times we have been walking through a store and the people around me cover their ears (I can’t help but laugh at least a little)! Imagine hearing that all the time is my typical response.

I think I can speak for most people when I say that I don’t mind being looked at. It’s your reaction after I notice you that either hurts or makes me feel ok. You could smile and let me know your not bothered by me and my amazing son. You could ask about my son. Heck bragging is fun for most moms!! When you behave like I’m an eyesore with my son or that my child is maimed, that’s what I hate!! I don’t bite and my son isn’t contagious. He isn’t contagious today, tomorrow, or any other day. So maybe, just maybe you could try not feigning as if you didn’t look at us when he made that strange sound, when he began rocking awkwardly in the shopping cart, or when he snatches food like a mad man off a shelf. I don’t expect you to take us home with you but can I get a bit more respect in your presence?

I refuse to hide him at home. I and many others will not allow state institutions and/or asylums to return. Lets face it guys we are not going away any time soon. The next time you see someone out with their kid and something seems “off”, try smiling at them or hey maybe just ask. We have to live together, so let’s make it easier on one another. Just a thought from an ASD parent, much love to all! :-)

Editing Has Begun!

I received an email letting me know my historical romance “The Chadwick Bride” is now being edited! I’m excited to start the finishing touches to finally have my book ready for purchase. This is the beginning of a new life for me and I am thrilled to share it with everyone. As soon as I hear from my editing manager next month I will post more news for everyone. I will also be plugging in with The Autism Society of Indiana and expect to be frequenting many of their events all across Indiana. I am very passionate about my writing projects and my belief in spreading awareness and furthering research for both the individuals on the autism spectrum and their families! I will be donating part of every sale of this book to the before mentioned organization. This is such a wonderful opportunity to make new friends, share ideas on autism/treatment, and seeing new places. I will post dates, times, and locations of all the events I plan to be at. I will also be holding a booth to sign my book and plan to bring my son Christian to as many of the events I possibly can. I hope to see you there!

The Little Woody Doll

I’m not sure there is a worse feeling than when you feel like you let your child down. In my case I should be used to that feeling, but I’m not. My son is autistic I cannot understand him all the time and isn’t that  just that? Here I go again walking up and down the isles at my local super store searching in absolute vain to find my wonderful son “The Perfect Gift” for his birthday. It isn’t easy finding a child who doesn’t understand how to play with a toy, a toy to play with. I realize he has never opened a single present but that isn’t the point. He probably wouldn’t notice he didn’t get a gift, but I would. So I go up and down every isle than up and down again.

One year on a whim I bought him “The Woody Doll” and after it was free of the holiday wrapping paper Christian fell in love. I cannot explain his fondness for Woody. Often he carries him about in one hand with the soft fabric legs bent and pressed tightly to his plastic head. Out of nowhere he drops the head and dangles him by one single foot. It makes Woody rattle and clank as the lone plastic foot and two plastic hands slap insistent against the head. I watch my son close his eyes for a moment. I see his eyes grow wide, he just listens to the clicking sound, and he feels the effect of the combined movement and sound. This was a serious aha moment for me!!

My son has it so tough and here I can’t even find a nice gift to celebrate his birthday or for Christmas. That simple doll has been a godsend. We now have little to no trouble at all finding our little guy “the perfect gift”. We find ways of making a toy dangle and click as he twists it within his grasp. I had to think outside the box and that simple toy spawned a wealth of incredible ideas!! Don’t force yourself to be think normal when you’re not supposed to be normal. Buying gifts for your children should be fun and I didn’t stop until it became fun for us. Autism is an everyday factor and a special occasion will not ever change that fact for us.

The idea behind this blog is I know there are other people out there struggling to find an autistic person a good gift. I found a solution that really will work for everyone. Try observing what they do with objects they do like. Is it unique in some way? It turns out my son likes things that dangle and feel weighed down as he twists the objects. We now go to the store and find objects with a good weight to them and then we simply make them dangle. A ball with objects inside it like maybe a bell, next we find very thick string or sometimes even rope. The final step is we put it together and call our creation “the perfect gift”!! Don’t give up, just find a new way of looking at things. Toss normal out the door because normal is a myth and has no place in everyday life for anyone, just my opinion.

I’m in love with my family they complete me as a woman. My hubby is a great guy in everything he does no matter if he is right or wrong. My son Devin even when he refuses to use his head is more than wonderful to me. My son Austin even with his hot temper couldn’t be any more sweeter. My son Christian even with his autism is a bright spot in a dark world. And Logan he’s six and thinks somehow he knows everything already, but still reminds me to enjoy everything I do. Life will be what it will be no matter what you think about it, so I suggest taking a new approach. When I stopped trying to buy my autistic son a normal gift I started finding good gifts. The only way I will fail as a parent is by not trying to see through their eyes and being closed-minded. Don’t let traditional thinking hold you back when you have to brake all the rules just to raise a child with special needs.

The poster child for autism

The poster child for autism.

Christians love

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He grabs me and hugs me was able to snap a pic at the right second!! And great eye contact too 🙂

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The poster child for autism

Let me start by saying that my son is the poster child for autism spectrum disorder. He has all the stereotypical behaviors such as repetitive noise making, swaying/rocking/jerky movements, and that corner of the eye watching of others. I know all about autism and how it impacts a family. It’s the first thing you see when you look at my son christian and that isn’t always a bad thing. I realize that autism is a part of my son there is no avoiding that. I like to think my son has autism and not that autism has my son. I look at him and to me his autism is much like when your tv is on, but you’re not watching it. You can hear it the tv, but you pay it no mind. You know it’s there, but it’s not the main focus. Autism should never be the main focus. The person on the spectrum should always be the center stage.

We brought our son home as a newborn thinking he was precious and perfect. We already picture how many things he would do with his future. The future many parents vision for their sons. I saw him as maybe athletic, possibly some big shot lawyer, and I never considered he would be handicapped. By 18 months we knew there was something not quite right, and I told his doctor that either my son was autistic or he was deaf. Four months, and several tests later we had the results. My son is most definitely autistic. We now have our diagnosis, he has autism, so what do you do? We excepted this wholeheartedly and moved on. Not to say this was cake and we never ever struggled, because we did struggle along the way.

The first five years he didn’t sleep more than a few hours at a time. We had to sleep in rotating shifts. I have to admit I broke down a few times and cried from sleep deprivation. We were terrified he would get out of the house in the night and be killed. We still some times have nightmares he does something and we can’t get to him in time. Paranoia? Well maybe a little, but with excellent reason! Christian has pica(the consumption of inedible things), he has no awareness of danger, and he is a flight risk. I worry and I fret but every mom does and every dad too. It’s just part of the job title I think.

We have come along way with Christian and it wasn’t an easy venture. With all the uphill climbs there are so many great things to make it more than worth the effort of a mount Everest expedition. He puts his arm around our shoulders and pulls our head to his chest hugging us; man nothing feels as good as that does. He’ll reach over and take our hand and just hold it; again nothing can beat that. My son Christian is the most loving and excited kid you could ever meet. Maybe he can’t say to me and my husband or his brothers “I love you” in actual words, but he has his own little ways. We talk to him just like anybody else. He likes when you say things like “Hey Christian, what’s up buddy?”. He’ll jump up and down and squeal his excitement when he knows he’s being included. He is just as loving and amazing as my other children are.

I made the decision to donate part of the royalties from all my book sales to the autism society in part for my own son, but also for every other “poster child” there is in this world. It’s difficult to understand, and it can be so scary in the beginning. We need the education and resources of places such as the autism society. We have adaptive equipment for Christian and we use the websites to keep informed about even more adaptive equipment as it becomes available. That equipment will help him be more independent and I hope thrive outside the safety net of our home. It’s a worthy cause and one that literally hits home for me! I just wanted to explain why I chose the autism society. As well as to let other people who deal with autism like I do know that I truly know and I respect you and all the struggles you face.