Remembering

I often get asked, 'When did you know something wasn't right with M?'
I don't believe our situation has been quite the same as so many families who have a child with autism, so I thought I'd share it with you.
M was a happy, healthy boy born past my due date by induction.  (and, yes, this is one of the many things that I sometimes torture myself with as I think of the 'what ifs')

He was bearing weight on his legs at an early age.  He smiled on time.  He held his head up strongly.  He sat up early.  The one milestone he didn't make that first six months was rolling over, but we'd seen it happen one time and thought it wasn't a big deal.

Around six months our happy boy began to do a few things that puzzled us.  He would incessantly shake his head-a giant grin on his face-as though he were trying to say 'no.'  I mentioned it several times to my pediatrician in conjunction with the note that we also have a nephew on the spectrum, and each time I was brushed aside like I was saying the silliest thing she'd ever heard.  M's head was also in the 95th+ percentile, which we questioned as well.  Though in truth, my family has a history of giant Polish/Irish noggins!

At nine months M began to do another strange thing.  While sitting up, and generally when he was very excited, he would put his little hands in fists out in front of him, tense his whole body to the point of shaking ever so slightly, and yell out happily, 'EEEEEEE!'

Again, I brought up this peculiarity to my pediatrician.  Again, I was told, and I quote, 'This child is NOT autistic.'

A year came and I can recall looking at photos much later how withdrawn and timid he seemed at his birthday party as his Aunt K held him during present-opening time.  I vividly remember saying that it was probably because he didn't know her well yet and was being shy.  But was it really that, or did he falter further after his one-year checkup?  I will never really know.  I always am careful to tell people that were were not one of those families who saw overnight changes in M after a vaccine.   There were the signs I mentioned earlier that tell us he experienced delays from birth.  I try not to get too obsessive or caught up in the vaccine debate, but in my humble opinion, I do wish that I had spread out and declined some of the vaccinations I did give him.




Back to his first year...I became very ill right around that time with a mystery, mega-virus for three whole months.  Multiple tests and trips to specialists (including a rheumatologist since my mother has severe rheumatoid arthritis) brought up nothing but a faint positive on the mono spot test.  It was the rheumatologist who told me that I likely did not have mono, but a mega virus that mimicked it with no name.  Regardless, it was the scariest kind of sick I have ever been and it left me in an awful state of depression.

M wasn't crawling at this point, yet another thing I had pointed out in concern to my pediatrician.  Even though I knew in my heart that this wasn't right, I remember feeling so ill that I was silently grateful for his immobility at the time.  It was about a month into this that my brother-in-law, the father of our nephew who is on the spectrum, spoke to my husband about his concerns for M's development.

When the other half came to me I felt very angry and defensive.  I do feel sorrow for my initial reaction.  I know now that it came from a place of love.  My main reason for such defense, however, was that I felt no one believed that I had been concerned or asking questions leading up to that point.  I have since that time learned on far too many occasions that a parent really does have to come to the point of seeing things for what they are mostly on their own.  I am grateful that my brother-in-law prodded us to seek an evaluation from early intervention, but I am also grateful that the prodding was left at that and not taken too much further.  I think just as a new parent needs her baby to sleep lots, then crawl, then walk...nature's way of preparing you for the next stage gradually, a parent of a child with special needs often also needs those baby steps to ease them into the hand they are dealt.

Our (less-than-stellar) pediatric neurologist that we began seeing around 18 months also would continually tell us that 'something was going on, but he didn't think it was autism.'  Many specialists would say this to us as M did seem to have a certain engagement to him that didn't seem typical of so many autistic children.  (*Please note that I firmly believe that ALL children on the spectrum have the desire and potential to engage and form relationships.)  And then there is the almost-laughable labels that he gave us; the ones so many of you parents of autistic children also received:  sensory integration dysfunction and global delays.  I would love to know just how many children are given those descriptives and DON'T later end up with an autism spectrum diagnosis?  Again, maybe it's all part of the settling-down-with-it process.  Less scary words to help you ease into the whammy that lies ahead...

And yet, when we did finally get the A-word whammy, it was actually quite less of a big deal for me.  I was alone with M at our yearly appointment.  He was 4 1/2 years old by this point and had been seeing a slew of therapists and specialists for over three years by then.  I calmly waited for the doctor to come in and calmly accepted his speech that went something like this:

Dr:  Well, I suppose it's time we put a name to this.
Me:  Yep.  I figured you would say that this time.
Dr. (totally non-plussed, no emotion) I believe M has high-functioning autism.  (and here's where you'll probably get the same chuckle I did when I left the office) Some people call it PDD-NOS, others call it Aspbergers.
Me:  Ok.  That's what I thought.
Dr.:  We'll see him in six months to a year.
Me:  Ok

Done.  That was it.  I didn't feel like I died that day.  I think I'd died a hundred small deaths already before then.  I didn't feel like someone had hit me with a baseball bat.  I felt totally at ease.  I called the other half on the way home and matter-of-factly told him what the verdict was.  (though I always said PDD-NOS because even I am not so much of an idiot as to think that is the same thing as Aspberger's...seriously!!)

I was somewhat delighted to be able to stop telling people, 'Oh, my son has sensory processing issues and global delays.'  The word 'autism' is a hell of a lot shorter and has much greater meaning to the general public, as vast as the spectrum is, and as little as people really do understand it.

The 'other health impairment' diagnosis that allowed him to be accepted into the public school's special ed. preschool program was quietly changed to autism.  We were two months from moving from the mother ship to California and this change would allow us to receive more services than OHI would have.

Unfortunately that high-functioning diagnosis would not hold and I will never know if it could have had we stayed in Texas.  Our boy, as you probably know, has plummeted and regressed into the world of moderate to severely afflicted autism.  This began when he was nearly five, a sad situation I have not found duplicated yet through all of the families I have met in person or virtually.  

I suppose the purpose of me writing this here and sharing it with you is twofold.  First, I need to document these things for myself, in hopes that one day I can read it again and think, 'My, how far we have come!'  But I also want to document it in case one of you readers is following a similar path.  I am knee-deep in the emotions that come along with autism.  I am often barely able to fully help myself find my way through it all.  But I know that the one thing I can fully offer up is a type of mentorship to those who walk this path after me, just as so many--like Susan Senator or Casdok--do for me.  Because it helps to not feel so damned alone in this all the time.  And let's face it, even though the numbers are an astounding 1 in 91, you can still feel like the last one picked for the team.  Sometimes I, as outgoing and personable as I may seem outwardly, feel almost autistic myself.  And, perhaps, that is just nature's way of also helping me to understand just a little more...

Community

I wrote the following for Hopeful Parents today.  Please be sure to check out their amazing community of writers and families!

Recently I had one of those rare nights out with the girls, two who also have children on the autism spectrum.  As we waited for our table, I had a more private conversation with one of them.  

M is a newer friend.  Our paths crossed before I even moved here, and perhaps that was the first sign that we should be friends.  She has not walked down this autism road quite as long as I have, but through our various encounters I knew that I needed to reach out because I think we are quite similar; outgoing, normally upbeat and strong-willed personalities.  Driven (perhaps sometimes to a fault), lapsed Catholic (bring on the guilt), and lead by our deep emotions that can sometimes empower us and often times overwhelm us.  

I have felt at ease opening up to M.  I am a very open and honest person, so this isn't normally an issue, but there are those things that a person sometimes needs to verbalize not only to the universe but to another being, and I guess that lovely glass of pinot noir, though only a few sips in, was the impetus to speak my heart.  I told her--as I dropped the volume of my voice just slightly--that sometimes I feel like autism is my living hell; like I have done something really awful in a past life and this is my hell on earth to repay it.  

No doubt, that is a strong sentiment, and one I realize has many tangential arguments that I acknowledge most directly.  But at that moment, on that day, I needed to tell someone that dark feeling inside my heart.  It felt good to let it out, and it felt good to hear from M that she, too, has had that feeling at times.  I don't think it's a coincidence that the two of us were raised in Catholic homes where you were encouraged to confess your sins to a priest.  Though we don't practice that religion any longer the need to purge our less-than-perfect thoughts is likely so ingrained in us that it will always be there.

But I recognize that you who are reading this probably also feel that need to purge those thoughts, and perhaps this is why this blogosphere is so crazy important to us.  

So thank you, members of Hopeful Parents, my personal friends, and family readers.  (Well, the two family members who actually know about this blog!)  You are my confessional and without you I know this journey would be a hell of a lot more difficult than it already is.

Mama Deb does a little too much reconciliation at This Is My New Normal.

How Do You Make Things...Uh...More Normal?

Yesterday we all played hooky; the other half from work, M from summer school and ABA, me from, well, driving M to and from summer school!

The boys had been so anxious to see Toy Story 3, so we made plans to go to the first showing of the day.

Going to watch movies in the theater used to be one of our only activities that we could do as a family and know that everything would go smoothly.  However, with the upswing in verbal self-stimulation M has grown into over the past year, even that has turned into a shaky event.

I'd mentioned not too long ago about seeing Shrek 4 at an AMC sensory-friendly showing. (The next one is July 17th at 10 am, 'Despicable Me,' fyi)  It was the most stress-free movie we'd seen in quite awhile since my kid most certainly wasn't the loudest of fidgety-est one in the room!  I will definitely go back to one of those in the future, but the time and date isn't always possible for us to attend, as was the case with Toy Story 3.

We thought a general showing of Toy Story3 would go alright since these are some of M's very favorite Disney characters.  And it did go alright for the first hour, despite having to turn off our own feelings of how someone should appropriately eat their popcorn when in public.  (ahem.)  But after that, you could tell that despite him being interested in what was going on on the screen, his body was winning out in its war to make him squirm and make constant guttural sounds. (Thank you person who brought small infant into the theater...your baby's constant crying helped drown out most of my son's sounds--woohoo!)  Inevitably once this movement and sound cacophony begins, he will progress to doing his signature move--he starts getting this silly smile on his face, leans into you as though he wants to interact or play wrestle, and then escalates it to an uncontrollable frenzy of sound and motion that generally ends with you attempting to get his solid 60 lbs. unstuck from you, his nails from clawing into your wrists, and for him to stop make the sound that honestly has started to make me shut down each and every time I hear it since nine times out of 10 it leads to a very frustrating moment.  


The other half was the one to take the brunt of this display this time, and since he was not in perfect M-handling mode, I could tell that he was not dealing with it well.  They left to watch in the wings a couple of times and came back to have M slip back into the same mode only minutes later.

I finally decided to take over knowing I'd receive more of the same.  I kept hoping that he'd just get his shit together a tiny bit since we were only about 15 minutes from the end of the movie.  Even though these are kids' films, I still don't like missing the ending, dammit! :)

But, alas, we missed the last five minutes of the movie when he just burst into tears.  It was too much for him to be there, and his body couldn't handle it anymore.  As much as I understand and sympathize with this, I still grieve for little B's experiences as well as for the other half and I.

I get tired of looking at all of our outings and thinking well, it was almost great.  Now, I completely realize that B is responsible for plenty of spoiled outings as well.  The child can't go on a walk without whining for you to carry him.  But when a kid has looked forward to seeing a movie for so long...talked about it multiple times a day for weeks...I get sort of pissy when his brother puts his parents in a foul mood that ruins the happy mood we all felt on the way there.

So what do you, parents of children with special needs, do to make these rough outings leave less of an impression on you?  Do you leave your child with a sitter so that your typical child can have more, well, typical outings?

B really, really wanted to go play video games with the other half, after the movie yesterday, so I told him that this weekend he should definitely take him to Chuck E. Cheese or someplace similar and I will stay home with M and take him for a walk.  That way, both boys get to do something they enjoy without all the stress of the other one not being able to handle it.  But is that fair to our family as a unit?  Is that healthy to start doing things in such a divisive manner?  I just don't know what the right answer is and wish that I didn't even have to  ponder it.

One of B's best little buddies whose Mom I count as one of my closest friends here, is having a birthday party this afternoon.  It's a backyard, family bbq, and I desperately want all of us to go.  I want the other half to finally get to know the spouses of my close friends.  I want to drink beers for hours on lawn chairs while our children play happily around us.  But the reality of the situation is that if I do convince the other half to attend with M (he says he's in at this point, but we'll see), is that if M is snatching food from the table or other people's plates, if M has an embarrassing meltdown in front of the people we don't know, or--worst of all--M gets frustrated with one of the little kids and grabs them, I feel certain we will have to leave.

 I would love to know how you all make outings more enjoyable and normal for your family.  Please be sure to leave a comment to let us all know!

Nu Life Allergen-Free Foods

We were fortunate enough to participate as a founding family for a wonderful new line of frozen foods for people with food allergies. I was beyond impressed by just how great tasting their products are!

Now that their web site is live, I strongly recommend you check them out!

My favorite products are the chicken pancakes and shepherd's pie. I just placed an order for both and am going to give their daiya cheese pizza a try as well.

Thank you, Nu Life!

http://www.nulifefoods.com/

La Da Di, La Di Da

Time is passing me by, faster and faster as the days progress. I just realized that I--the one who was fairly anal retentive about this task--am over two years behind in uploading family photos from my laptop onto Snapfish. I used to have a system whereby every few months I'd upload to Snapfish, create a backup on cd, delete from my hard drive, and then print out my favorites for a chronological photo album. Sounds a little nutty probably, but I love going through those photos with the kids, reliving all of the hand-picked, happy moments.

I thought we were going to put this crazy-ass house of stairs on the market 1.5 years ago and move back to the mother ship. I really, truly did. And in an effort to get it 'show-ready' I packed up all of my pictures in frames along with books that made the shelves look too cluttered and photo albums that took up too much space. They now reside in a lonely storage center where I haven't laid an eye on them in over a year. Oh, and the house still hasn't gone on the market...sigh.

We just got back from a 9-day vacation to the most beautiful place, Flathead Lake in Montana. We went with my best friend and her family for the second time. The first trip, three years ago, was so gloriously relaxing that I was chomping at the bit for this one to arrive. My black cloud decided to follow me, however, and I ended up sicker than I've been in a long time for the entire flipping trip. Woe is me. I know, I know. I have much to be grateful for, but sometimes I feel like I have really shitty luck.

Everyone had a fantastic time (well, everyone else), but I had lots of time to ponder where I am in life and how I am living it. The outcome? I'm not at all happy with the way I pass each day and know that I am not living up to my full potential. I am too-this and not-enough-that. I don't laugh like I used to. I fret over shit I don't need to fret over. I am on edge. I have a lump in my throat. I don't know where the heck the flip switched from 'then' to 'now,' but it's switched and sort of feels like the damn thing is stuck. I realized recently that I, the one who fostered dogs for six years and held that fact dearly as a big part of who I am, can't even stand to have my own two dogs underfoot anymore. I have not sung in public in nearly two years. I feel uneasy for the first time in my life when on horseback. Seriously, folks, these are three of the most important 'me-things' I've got, and I am losing sight of them all quickly.

One thing is for sure, I am no good parenting around other people beside my immediate family. Hell, I'm probably not even that good around them either! But my sensitivities and insecurities that have always been just beneath the surface are now open, festering wounds for all the world to see. Bandaids, please! Stat!

M did great overall on the trip. The boy truly loves it when we rent a vacation home, and it is a joy to witness. However, his food obsessions were in full-force during this trip, and that is a tough one when you are traveling with another family who also has two young children. M was constantly swiping food from the 9 month old's high chair or their three-year-old's plate. And most of it was gluten-containing, so that was an added hyperactive bonus for us all. I found myself so infuriated by this that I was constantly yelling, "M! NO!" when I caught him doing it, and naturally putting the rest of the group on edge. I guess that sometimes I feel like I'm the only one paying attention, though, and I'm sort of tired of it. I very much want to relinquish all concerns in that regard for a few days, but I can't.

The weather sucks currently where I live, and I know that plays a huge part in my melancholy. I love that word, by the way. "Melancholy." I saw a doctor of osteopathy a few weeks ago to check out cranial sacral therapy and to look into alternative/complementary means of aiding my overall health. After going through my lengthy history and coming to the part where I said that over the past couple of years I've definitely noticed an increase in anxiety and depression--but not really depression, she said, 'So you're saying you've noticed more melancholy?' And I paused for but a moment and said, 'Yes, I'd say that's exactly what it is!

I am taking my vitamins; mutli, omegas plus vitamin D3, calcium, and probiotics. I just ordered the Turbo Jam dvds hopefully to not waste them as I have with previously purchased workout videos. I have a sitter coming tonight after a week-long solo flight while the other half has been across the country on business. I am trying, and yet it does not seem to be enough. I need an attitude adjustment. I need a house that doesn't have so much negative energy floating around it. I need a school district I feel is more qualified to help M. Oh-wait--a bright spot! I adore our new ABA therapist, as does M, and am so grateful for that huge weight that has been lifted from my shoulders.

So it's not all bad, right? RIGHT?

And it's going to get better, right? RIGHT??

And maybe I'll blog more than once every two or three weeks, right?!

Let the sun shine!

Oh, To Know What M Would Ask Me!

I thought this was really special...

I Need To Write More...

...it's good for me to put my feelings down someplace other than inside my scrambled brain.
It's good for me to know that I have people reading who love me and my family or relate to our lives through their own.

So why have I been so absent lately?

I suppose it's that lack of THE word I've mentioned as being at the top of my 2010 mantra list: BALANCE. I swear to you, the word itself is magnified in volume in the world around me. I'll not hear a single word spoken from a person standing near me or from the tv, etc. but I always seem to hear it when someone mentions that word. It's as though it's enlightenment's way of teasing me; reaching out her arms to pull me in.

Balance, balance, balance. If only you can find the way to BE balanced, then the rest will fall into place.

Heck, one of my oldest friends and a reader of this blog (Hi, J!) recently started her own blog. Guess what it's called? Be Balanced Houston. See? It's everywhere!

It's amazing how when you're filled with a particular vibe, you discover that so many around you are in the exact same place. I've noticed quite a few friends who have slowed down the pace of their writing. And when they have sat down to share some thoughts, I can't get over how their topics of conversation are so on point with my own. I just read a blog I hadn't caught up on in a few weeks to find a guest blogger writing about being stuck, writing pros and cons lists for places to live. Then I read that the author of the blog was ready to move away from her lifelong home due to the dreary, cold weather. People...I was just thinking not an hour ago about writing out a pros and cons list to show the other half so we can once and for all decide where the hell our family should set down some roots. And not an hour before that (okay, and for a month before that as well) I was bitching and moaning about how flipping cold and gloomy my little coastal town is. Mama needs to put on some flipflops and a sundress and take in some vitamin D, people! Clearly the weather is currently at the root of my inability to achieve balance.

But we all know the main crux of the balance issue and that is my comfort level with where M is in life. It is so painfully clear that I will likely never achieve any sort of balance--not even that teeter-tottery sort where you're not sure if the person on the other side is going to hop off unexpectedly making you crash into the ground--until M is in a good place. Hell, even a better place. But I'm still making baby steps in the right direction.

I didn't spell it out in a recent post, but I will now: After nearly two years of fighting my insurance company, I finally succeeded in getting them to qualify M for 25 hours/week of in-home ABA (applied behavioral analysis) therapy. For those not in the know, this is HUGE, HUGE, HUGE!
Our amazing therapist began working with our little guy just over two weeks ago. We are currently only using about 16 hours/week because it is definitely a lot for him to go to school and continue to do work at home afterward. But there is so much general learning that is wrapped up beautifully in the art of play that he doesn't always realize it should be considered work. The weight lifted from my shoulders is immense. We had gotten into a real rut of doing nothing after school. It had become next to impossible for me or B to engage M in any activity. We couldn't even get him to sit still or quietly through a simple storybook. And forget any chance of going anywhere. No, sir, that ended close to year ago. I simply was not capable of many outings with both boys, by myself.

So as much as I hate to admit it (it's that Mama guilt thing of not adding up) this in-home therapy is the best thing we could have possibly hoped to have happened in the current position we're in. (i.e. no family support nearby, not-ideal school environment) I am so grateful for the bit of balance I am starting to achieve simply by not feeling guilty about my son pacing back and forth making verbal self-stimulatory sounds for hours and hours after school with me too fried to do much about it.

I am not a quitter, though I've not always pushed myself as hard to reach the finish line as I should have. So one day, maybe I'll find the right place to live. Maybe that place will have the right school for M. Maybe I'll figure out a way to get back to the me I used to know. (well, the good parts of me, that is) And maybe my family will plant some roots that spread widely and firmly; enough to balance us all. Enough to make us feel happiness on a more regular basis.