Monday, July 29, 2013

Happy Birthday: A Letter to My Son

Dear Xander,

   Today you are three! It feels like only yesterday I was pacing the aisle of that hospital, big as a whale, begging you to hurry the heck up and get out! We already knew by then we were no longer on real time, 9 months before we transitioned to "Xander Time" and haven't been back since. Every step of the way has been on your terms, when you were good and ready. Life today being no exception.

your first picture ever.

    These days you still don't really talk. I'm sure when you read this, you will be a regular "Chatty Kathy," that probably came in your own time too. Lately, I just look forward to the days you are more focused and willing to answer Dad when he asks what your dinosaur or rubber duck is. Those are the brightest days!

    I can't wait to ask you what sensory days are like from your point of view. To truly understand why you want to bang your head and rub your arms and belly. What squeezes do for you and how compressions affect your mood. To hear about what makes something stim worth, why certain pictures are stims and others are just pictures. What about lights makes you giggle and what makes jumping so much fun.

    I hope I've filled your mind with as many positive thoughts as I could manage over the years. That you've grown into a young man who knows he has challenges, like all people do, but that they shape you and make you better not less as a human. I hope you have learned to never be ashamed of your autism, to never feel like you couldn't be whatever your heart desires because of it. You have probably been bullied or told you can't do something because of a delay, most of us in our lives have at one point or another regardless of any diagnosis. Hopefully with our help you stood up to those naysayers and proved them wrong. Whether you were actually able to achieve the goal or not, you were brave enough to try and that's proof enough that they were wrong.

    While I wouldn't take away your autism, because this is how God designed you, I pray it has not defined you. I hope people see the bright brave amazing little boy I see jumping on his trampoline in front of me, grown into a strong loving man first; someone who has done all of this while having autism, not in spite of it. They will not see you as a person capable of less, unless you let them. And that if they can't see past the autism at first, upon meeting and getting to know you, that their opinion of autistic people is changed because of spending time with you.

    My greatest wish for you is that you find love. I don't know what the future holds for you and a thousand doctors can guess and tell me what your life might be like, but until we get there we just won't know. But regardless of severity years from now, don't ever believe for a minute that you can't love. I see the way you look at your father and me and I know you love us. I see it in the serious face you get when you grab my head and sweetly smash your mouth against my forehead, copying my way of giving you kisses. Your father lights up when you guys are having a tickle fight and your eyes sparkle and you start to laugh in that way only Dad can get you to. You deserve to meet someone and fall deeply in love and I have no doubt you will someday. Relationships are hard, they can be hard for anyone, but anything worth having is worth working for.

   You are my pride and joy, I will love you until the end of time. You have made me infinity proud over the last three years and I look forward to many more years of bursting at the seams with parental pride. I can't wait to watch you grow up.

I love you, Xander Bean!

-Your Mom

Sunday, July 21, 2013

This is Going to be a Hard Week

     So this week brings about a lot of changes. This week, three years ago, I had already had three false labor "episodes" and was big as a whale and ready to pop! My baby boy will be 3 this coming Sunday. But its bittersweet. We have to say goodbye to his first friends. Because of the way that early intervention services are designed, birth to three are one unit and three to five are another.

     So Friday will be his last day with the women that have helped him more than words can say. These women have been in and out of our home several times a week; cuddled, yelled at, climbed on and laughed with. They know the silly little things Xander loves to play with. Like the feet of the scale the nutritionist brings with her every visit, that she lets him play with before getting him to play her game and stand on the scale. Or that his speech therapist knows his favorite puzzles and which puzzle fits the mood/level of attention he happens to be in at the time. Or that his o/t is willing to flip, spin and twirl him for her entire session all while talking over updates and changes with me. They have watched him grow up; feel the joy of seeing him learn new things and the pain of him losing some.

     His speech therapist was his very first service provider to come in and for a while took care of his sensory needs too. She really was his first friend outside of family ties and it will be hard to say goodbye to that. Sure he's young and will move on without remembering or mourning but I'll remember. They have helped my baby, they have come in and listened to our ups and downs, given advice and helped where they could. They have become friends. I wish I could express my gratitude for the help and kindness they have all bought into our lives in a time that felt very lonely and restrictive, but I feel like my words are failing me. I'm sure we may try to keep in touch a bit but the world keeps moving and new clients come in, just as new therapists will fill their spots. But there will always be a soft spot in my heart for each person who has come into our lives and helped my boy take even one step farther down his road towards his true potential.

     Xander will be starting pre-school at a private autism based classroom in the next town over thanks to the support and help of not only his therapists, but his doctor, bsc, tss and the advice of the Aboard services. We fought the evaluation that put him in a delayed classroom twice a week for two hours a day because it truly wasn't what was best for Xander and won! Thank God. So in the fall he will be going 5 days a week for about 5 hours. It sounds like a lot for such a young kid but the more help he gets early on the better. And without the support of his early intervention team, it wouldn't have happened.

     Thank you, from the bottom of my heart. I will tell Xander about how you and all the others after you have helped him reach his goals.

Friday, July 12, 2013

The Light at The End of The Tunnel; Just Keep Running!

     On the off chance I actually have a regular reader, I apologize to you. I have not been what one might call a "regular writer" this past month or so and that's not for lack of eventful happenings. Actually the opposite. I wish I could say summer has us bogged down with crazy activities or we are spending each day exploring new places but the hard true of it is that Xander's been getting worse this summer.

This is a snapshot from a 
video we took of him screaming
during a session.
 (noise warning!!)

     Worse?! What exactly does that mean? Well its kind of a complicated thing to explain, but over the last few weeks we have seen a rapid decline in almost every area. My bright clever little boy isn't labeling anything anymore, hell we can only get him to say 3 words and that's like pulling teeth! The screaming and obsessive compulsive behaviors have gotten worse too. Sure it's kind of cute that his little animal lines became parades around the table, but the fits over moving even one toy aren't normal, even by autism standards. His anxiety has always been an issue but that's amped up too. This is only scratching the surface of the new challenges the last two months have brought but no one wants to read a pity party post. Long story short, his developmental pediatrician thinks he has a mild case of PANDAS or PANS and has him on antibiotics. Its a very controversial diagnosis, as some doctors think its a load of crap but if a month of antibiotics might help, I don't see the harm in try the treatment. She doesn't think its a permanent case but its still a scary issue.

     We (my husband and I) try to avoid any thought process that starts with "Why did this have to happen to us..." but for the last few weeks its been that nagging thought at the back of my mind. We try to treat autism as much of a blessing as possible; we have become a strong family because of it not in spite. And we never look at it as something wrong with him or in need of curing, but this sudden onset of intense symptoms just doesn't feel right, if that makes sense at all?

    We are all still adjusting to Alex's new work schedule that basically puts him 10-12 hours ahead of us as far as how his internal clock perceives time. But with Alex home sleeping during the day, when Xander goes down for his nap due to the heat, I get to have time to myself! This is something that is truly rare in my life. With his heightened clingy-ness I can't so much as leave the room or run upstairs without a screaming fit or him chasing after me. But for about 3 hours everyday I get to be Devon. Not Mom, Wife, Daughter. Just me. And that feels good. I start to forget how that feels after a while. Best part is I get an escape from autism. Don't read into that, I don't mean from my son or from his challenges specifically, but just the world AUTISM. I don't have to think about it, it doesn't need to be the subtext of everything I do like it is the rest of the day. I don't need to worry about what's next and why he's getting worse. I spend far too much time with that word bouncing around in my head and I need an escape.

    So I run. I started a few weeks ago and every day I've been trying to get out to let out some steam. I joined a gym, due to the heat, it wasn't healthy to run in the middle of the day when he naps. But luckily we have a minor break in the weather and its beautiful to be able to kill myself running up a hill just to see the
view from the top of a hill behind our house
with a loose gravel road and stream. I love where we live!
view from the top! I sent myself the goal to run a 5k on October 12 this year for a local autism school, they are raising funds for a playground. That's the day after our fifth wedding anniversary, so I thought it was a fitting day to celebrate autism, my marriage, my family and my health. I have a wonderful group of friends, new and old, who are supporting me with this new challenge and I honestly feel like I wouldn't be handling this new situation without getting out there everyday. There is nothing harder than watching your baby lose the words he fought to hard to gain. But we aren't giving up, gradually things will improve and we will get our Xander back. But until than we just need to keep pushing til that next ten feet, then the next couple of yards, half a mile and before we know it we will be farther than ever before!

Friday, July 5, 2013

Meeting Others Like Us

     I don't often surf other Autism blogs but I do have a few that are my regular reads and "Autism with a Side of Fries" is one of them. I instantly feel I can relate to her posts. After days ago, she posted about meeting spotting other ASD families. I recently had an experience with meeting a sweet little boy and his mother at the park.

We live in a truly beautiful area!!

     As we approach any play area, we first survey the swing situation. Are there swings available? Who is around the set, teenagers who have no real business being in a kids park, loud big kids that might get nosy and ask too many questions (yea that's happened and explaining to a 7 year old what "antisocial" is isn't any easier than using the word "autistic.") or perhaps we will get lucky and there will only be a quiet little girl who's happily swinging in her own little world. This time as we got closer, we noticed a little boy, who looked to be Xander's age, swinging in a "big kid" swing with a ridge straight back, starring off into the cloudy sky. My husband and I exchanged a look. It's odd to see a three year old sit so still on a swing designed for bigger kids, but Xander has been very good at it since before he was two. It sounds silly to say that tipped us off but it did.

     We got Xander on his swing and set up and he happily zoned out, enjoying one of his favorite activities. Being the "Chatty Kathy" that I am, I decided to try to make conversation with the little boy's mother. I asked the little boy's age and we had been right with our guess, they were only a month apart. We exchanged a bit of idle talk, when her son cut us off with broken words that seemed to make sense to him alone. That confirmed it for me. The mother saw me smile at the little boy and informed me he had a speech delay. I told her Xander did too, though it was unlikely she'd hear him talk at all while he was swinging. I also said that he was autistic. She seemed to loosen up a bit and commented that they had been told by his early intervention team that he was too but she didn't think it was the right time to go to Children's for testing.

     That's when it hit me. Crap. She's in denial and we are one of those "wear it like a badge of honor" families. I had to switch into tread lightly mood fast. Apparently we shared a lot of the same therapist and they had been making suggestion for a while but she felt it was that big of a deal. The boys had a lot in common, both good and bad. But it was pretty clear after the 45 plus minutes we were there that this little guy was just like our boy and our therapists were making accurate recommendations.

     I answered her questions about our process of diagnosis and explained that yea it sucked to hear something was wrong, but it wasn't a surprise. We knew something was up, now it just had a name. Autism doesn't make life easier but it adds color and variety to our lives in a way that I don't regret.

     By the end of the conversation she said she was feeling better about it all and that she might look into making the trip after all. I truly hope she did. In my opinion, no matter how hard you fear it will be to hear what you expect, it will only get harder with time. Once you hear it, see it on paper, you can start to accept it and embrace it. Autism is part of who my son is, not who he is but a part of him. He would be different without it and for that reason I wouldn't wish it away because I love him just the way he is. But staying blind to the situation in front of you is never healthy.

     I hope, in the coming years of school and therapy, I bump into her again and see that they are all doing well and maybe in some small way what I had to say to her on that overcast day at the park helped. From one Autism mom to another.

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