Homework, Demons, and Metaphorical Mountain Climbing

We all want our kids to do well.  Sometimes, I know Alex is working his butt off but people who are not me, who do not live with him, who have not struggled to achieve almost every childhood milestone with him, cheering him on, cannot see the effort.

I think this probably happens to most parents at some point in their child’s education, but I have a hunch that those of us with kids who aren’t just “wash and wear” (wash and wear kids are born, hit their milestones, and for the most part only visit a regular pediatrician) have this feeling more frequently.

I sometimes feel this need, this drive, to correct the tiny things, the little oopses, so my kid can shine and people will stop seeing only the little tiny bits that need extra care and all sorts of implements and technical terms and see him as the whole, amazing person he truly is.

Which is, well, what we all want.  It’s just that Johnny (generic Johnny, not a real kid) never got the raised eyebrow from the pediatrician or the talk in the hallway from the preschool teacher (and the business card with the number of Easter Seals on it)… But Alex did. So for me, at least, that makes every victory that much sweeter and as his Mama it makes me fiercely defend what he can do.  And he works hard. Really hard. Other kids in his class have playdates and sports and even siblings. We don’t have time for that. We have Asperger’s (his and mine) and a whole buffet of physical disabilities (mine) that make this “acceptable”(for a typically developing child) amount of homework one of the only activities our family has time for.

I realize that my child may look lazy or confrontational at times or like he just isn’t listening. But he isn’t those things and he is listening.  When his teacher said “Alex, you only do your homework when you feel like it” she devastated him.   Alex doesn’t “feel” like doing 4 hours of homework every night.  Alex doesn’t feel like missing out on all physical activity and fun because he struggles to understand and at the end of a 6.5 hour school day, the last thing he is ready to do is put his nose in the books and pencil to paper.  He needs time and space to decompress. Any kid would.

I give him two rules for his day as he stands by the elevator in the morning, “Have a great day” and “Do your best”.  I am at the point where wishing him a great day seems too loaded, because then he feels like he broke a major rule if he doesn’t have a great day and that’s the worst thing for him because  Alex doesn’t break rules. He can’t. He’s not wired that way.

So we are waiting for our meeting with the teacher.  I don’t think that she really understands our kid. We gave them piles of information (and well crafted summaries, so as not to overwhelm). I feel like they were ignored and here we are.

I feel like we can’t ask for anything because it’s a private school. I feel like we can’t push it because we can’t put him in our local public school. And I’m too sick to home school him and 18 months of zero income and sky high COBRA health insurance and being sick is expensive. These things have left us so deep in the hole that the future is forever changed and we are indeed so very stuck.

Alex broke down yesterday and told me that he hates school.  He said that everyone makes fun of him all day long.

I broke down too. Because that’s my kid. And there is no way in hell (or Florida) that I will let him experience what I experienced at his age and most of my life with my peers and with some adults.  I don’t have to worry about him not being accepted by his parents, because he is mine and no matter the challenge, he will have me by his side, ready to tackle it.  But schoolwork is making up 100% of his days since they bumped him into the first grade.  And if he hates school, that sadness, that feeling of rejection, is riding on his shoulders.  The kid is brilliant, I can’t have his self esteem or his desire to learn squashed this way.

So we are waiting for the meeting.

And I’m compiling bits of evidence to share with the teacher and the administrator that show how Alex’s mind works and that he isn’t being a defiant little brat, but that this is his neurology. This is his wiring.  It is amazing and it makes him who he is and he is a spectacular human being with an incredible mind and a spirit that needs to be supported and encouraged and not squashed like some unsavory kitchen pest.

So here’s the evidence from today.  Here are Alex’s spelling words:

He has a bunch of activities for homework, every week, that involve the spelling words.  The activities are actually pretty cool, as the kids learn spelling, grammar, etc…  But with the amount of homework, Jeff has found that the best way to tackle these things are to get Alex to first transcribe the words onto lined paper and then go through word by word cracking out the activities for each word, assembly line style (or “Robot Style” as Alex and Jeff prefer to call it as it is much cooler sounding).  So I had Alex transcribe his week 3 words 3x today.

Do you notice anything?  I was going to correct him at first…

See how “photographs” (his handwriting has come so far in the past few months!) is above the dotted line on the paper?

I said to him “Hey Alex, why isn’t photographs on the bottom line?”

And he said, because that is how it is written on the list of spelling words from the teacher and he told me that he has to write it the same way or she’ll be annoyed that he didn’t follow how it was written on the paper.

So I looked.

Here it is again:

To fit the word “photographs” in the list they had to shrink the font.  So the bottom tail of the “p” isn’t touching the line at the bottom of the box it is printed in, the way the rest of the p’s on the list do.

So he wrote it above the bottom line on his paper, so it would be precise enough for him to avoid reprimand.

I had him leave it alone rather than explaining it and rewriting it. Don’t worry, I’m not throwing him under a future bus, I will explain it to him but just not until I get to talk to the teacher or we are eyeball deep in next week’s words because otherwise he will flip his lid until he can correct it.  I told him that it was indeed written that way and that I would talk to his teacher about it.

I want to scream “SEE! SEE!” and jump up and down in the schoolhouse.  I want them to see that this isn’t attitude or defiance or stubbornness or just some weird but average kid who demands things his way.  This is MY kid. My wonderful amazing kid who has Asperger’s Syndrome and he doesn’t ever  break the rules.  Breaking rules is actually painful to him.  Writing the word “photographs” on the regular line would have been breaking a rule to him.  And all he wants his teachers and the other kids to see is that he is a good boy and that rules are important and that he always follows them and they can rely on him to remind them of the rules or even teach them new rules, rules that aren’t strange and bossy rules, they are rules that if everyone followed them our world would be a much calmer and happier place.

He occasionally makes up rules.  Like the list of rules he made for Jeff and me when we were upset about something.   He wrote his observation, “They weren’t happy” and his new rule “Be happy” in the little notebook that I used to help him draw paw prints in (I would leave post-its with paw prints around the house for him… it was our own little game of Blue’s Clues).

But other than that he just really wants people to:

Not run in the classroom

Be nice

Use indoor voices when indoors

Help each other

Not tap pencils when other people are trying to concentrate

Not talk when the teacher has said “No Talking” (and he always gets in trouble for talking during this time because he is trying to tell the kids who were talking initially that there is “no talking”)

Know what a good friend he is (he reminds me of this all the time.. I know what a great friend he is, but he wants a chance for the other kids to find out)

Respect electricity.

Are those rules really that far out and unreasonable?

I don’t think so.

And I’m not coddling my kid.

I just need people who have contact with him on a daily basis and are supposed to be fostering a love of learning to know that he is indeed organically different from the other kids in the class.  I need people who have contact with him occasionally (very occasionally) who have not given me the benefit of the doubt to give him the benefit of the doubt, and if they truly love him, to give him that benefit of the doubt while not taking advantage of our overly kind nature and our desire to fit in.

Every kid is different.

My kid is different from all of those kids.

We just need people to respect the differences and not make assumptions about our kid, about us.

I have lived my whole life with people judging me and not giving me the benefit of the doubt, my brain is full of facts to defend every action I have ever taken.  But that stops now.  I am who I am. Alex is who he is.  I’m sick and tired of dealing with other people’s laziness and closed mindedness and I am just not going to tolerate it anymore.  I’m so full of this frustration and anger lately and digging up old bones more than usual because I need to figure out where I screwed up – not in what could I have done differently to not provoke the wrath of various people- but rather what did I do to make them think they could treat me the way that they did.   And there isn’t an easy answer.  This isn’t about self-help books or talk shows. It’s about people treating each other in a mindful way and not always taking the easy and selfish route. And it will be a cold day in hell (Florida?) before I let Alex become a doormat for other people’s demons and desires.  And the best way I can do that is to stand up for myself and be the best damn role-model I can be. After all, I’m his Mama and his best friend, and together we can scale or topple anything that gets in our way.

Chances are though, we will still politely ask it to step aside first.

Then we’ll topple the daylights out it.

*cue soundtrack to Legend of Billie Jean…Glad I hid my haircutting scissors and Jeff’s clippers before I decided to blog this evening*

xo
Bek
Facebook
Etsy Shop

A Chip Off the Old SIGG bottle.

Sigg & BPA

Originally uploaded by CleverIndie

SIGG was a company many of us trusted. We were led to believe that we were making healthier choices for our families by choosing SIGG’s water bottles. Many of us recommended their products to friends and family, hoping to spread the healthy message of avoiding BPA.

I don’t feel like we drank the kool-aid. I feel like someone slipped something in our drink, in this case it’s in our water.

They claim the amounts of BPA are not able to leach into the water.

Here is Alex’s bottle. See the chips and the damage to the threads? That’s through regular wear and washing-since June 2008. The bottle is always used with a plastic SIGG “sport” top. Our other bottles don’t look like this, thankfully. Even if the BPA in these bottles really doesn’t leach in water, what about the folks that use their bottles for more acidic beverages? How does their supposed non-leaching liner behave then?

And what about when that lining chips off while the thoughtful Mama, trying to do the best for her kid, screws on the top and that little bit of lining enters his mouth, and travels into his stomach?

Does the BPA leach in the digestive system?

What does that BPA do to growth and development in that kid?

I’m curious.
I’m frustrated. I’m disappointed. I’m angry.

I’m exhausted.

Not over the bottles. Or, not completely over the bottles. I guess we have to assume that if damage was done, it has already been done.  But don’t take that as me being passive because if anyone contributes to the challenges Alex faces in this world I cannot let it just float into the wind as just a hard lesson learned in the trenches.

So what to do? Right now I’m sitting here looking at 5 bottles and wondering what to do.

Will people ever trust SIGG and their new eco-liner? The company is offering a voluntary bottle exchange- send in your old bottles and they will email you a code to cover the cost of a replacement with the new liner, from their webstore, but that is little consolation to those of us who put our health, the health of our families, our cash, and our reputations on the line.

But do we trust the new liner? Will we ever trust Sigg again?

And when will the FDA catch up with Canada regarding banning BPA?

And what will this stuff do to my kid, who probably has ingested a chunk of it. Or what has it done already?

Bubbling fountains of exhaustion…

I am exhausted from having to spend time (that I should be spending with my child) defending/explaining myself as a parent to other people and managing unreasonable expectations of other people.

I’m thinking of printing up some wallet cards- on one side they will say “My child has ASD. Your ugly, judgmental expression and attitude is making him scream louder.” On the other side they will have a host of facts… There will probably be some snide comment about Rainman and of course something about Autism being a spectrum. Possibly the definition of  spectrum as it seems to evade the people who latch on to Rainman as the diagnostic criteria.

But it’s not just strangers.***

A great piece I read recently for grandparents with a newly diagnosed grandchild with Asperger Syndrome mentioned how to behave if they don’t believe the diagnosis and how to find more information about Asperger’s. It’s a perfect letter, even in it’s very broadness.  I’m amazed on a frequent basis how many people (friends, family, acquaintances***) tend to ignore the diagnoses and trials we have faced in the past 6 years. It’s a type of denial that from afar seems like the most loving, generous acceptance, but from this perspective is just plain ignorance and refusal to accept the reality.  Every article I have read about special needs parenting and grandparenting speaks of mourning the loss of the dreams one had for their imaginary perfect grandchild.

Blech.

I get that it needs to happen for many people and it’s part of the healing/mourning process. But I also think that lots of parents with a special needs kid don’t get the luxury of going from everything is fine to a diagnosis and having time to process any of it.  We are entirely too booked to spend time doing anything other than supporting our kids and most of us don’t just wake up one day and say “Johnny is sort of ‘off’ compared to his peers”, it’s an ongoing and lengthy process.  It’s also incredibly isolating in so many ways.  Grandparents and other relatives*** adjusting to a diagnosis, if they share the information, receive sympathy and support which is wonderful.  As a parent who has been through the wringer, I wish I didn’t feel like dancing around singing “I told you so! I told you so!” in full operatic blast at the people who called us names and labeled us and suggested we improve our parenting skills rather than pursuing a label and help for the broad and invasive symptoms our son was having. I wanted a piece of paper that has his diagnosis, I wanted it framed and a mini laminated one for my wallet. One that says “See, I’m really an awesome parent to the world’s most amazing little boy who happens to have ASD” (It would also have a little *ASD is a neurological condition and not a result of poor parenting or non-corporal discipline” and possibly a genuine, heartfelt “Na-na-na-na. So there. Pfffft.”)

If I could I would enact a law that would make people apologize for the hurt they bestowed upon the exhausted parents, and the child.

I think one way I can make lemonade out of our scary and horrible 20 week ultrasound (we had a bunch of red flags either for Down Syndrome or genetic disorders incompatible with life, turned out to be due to a scheduling error. Yes, my hair did start going gray on the spot) in that it made me examine the expectations for my child.  Alex’s hydrocephalus and initial kidney reflux made me examine the expectaitons once again.  When he was a year old the early intervention case worker asked what our goals- short term and long term- were for Alex.  Nobody wants to go through any of this special needs stuff, but really, understanding one’s expectations and setting goals for your child and for yourself are crucial.  I understand the need for Kubler-ross’s stages in processing these things, but to be blunt: I don’t have time to hold your hand. My kid needs both of my hands 24/7/365. I can steer you toward sources that can help, but frankly I have been on my feet 24/7/365×6 (except for the few months on bedrest when I was called selfish and uncaring because I did not appear at one birthday party) and the only me time I have is the 15 minutes in the shower where I really just lather up and cry so my kid doesn’t have to ever think that the tears are because he is different in so many ways.  They aren’t. They are because I am exhausted and when I have opened up about our trials and tribulations and our triumphs I am told I am too negative or obsessive or I just talk to much and I go on and on (I do. Guess what? Kids with Asperger’s usually have a parent with many traits. Definitely applies here.)

Which brings me to the 2nd most exhausting thing : having to manage other people’s expectations. Those folks living in semi-denial (they seemingly accept your child by ignoring their differences completely- lovely and sweet but it brings a whole new element of feeling like one is living in the twilight zone as they brush everything off and saddle you with a virtual straight jacket while your child gets himself into dangerous situations and they just smile and tell you to stop being paranoid and overprotective as that’s what all boys do.).  They don’t accept the reality, they cannot form any sort of support whatsoever. They can’t even watch your child safely for an hour so you can go to the gyno without holding a puking an infant during the exam or so you can just let go an nap without worrying about every little noise.  Because they, in their denial (for lack of a better term, I also think of denial in many cases is better described as intentional ignorance) can’t possible babysit for your kid because they don’t really see your child in all his/her real, rawness. They see the child they expected, particularly in the case of kids with invisible differences.  They may comment on your parenting as a potential trigger to the child’s differences. Every minute of everyday of my life, since we were trying to conceive, has been dedicated to my son. I would love a day off, or an hour where I don’t have to divide my senses to accomplish tasks and keep him safe.  The reality is that without the attention we have given him, he wouldn’t be in school. He wouldn’t be communicating with any of the other kids in any positive way. He wouldn’t be able to sit and focus on some of his favorite activities.  Explaining that he is not cured and this is a very real thing that requires this much attention and having to defend our decisions as his parents is so exhausting.   The only thing keeping them from accepting our kid is themselves.  Their intentional ignorance (they have as much access to resources as I do, they can ask if they need guidelines or information, but they never have) is based on their expectations.  We are burdened with their expectations, thankfully we aren’t further weighed down with our own as we know better.

When Alex was born we were burdened with the expectations of a relative who expected Alex’s birth and the following months to follow what she had imagined, but no adjustments were made for actual circumstances (high risk, prematurity, c-section, NICU stay, and weak immune system and RSV/flu season quarantine) and who suffered for it?  The handling of those expectations, the intentional ignorance (it was decided that we were paranoid neurotics because we wouldn’t visit with anyone with a cold, flu, or mono or visit hospitals with our preemie. We were listening to the guidelines given to us, and frankly common sense, and passed the information on to family and friends to protect our premature infant), still does damage to Alex and to me and to my husband(and some people have still not bothered to read a single article that would tell them that we were rational and being good parents, not neurotic germaphobe freaks).

We don’t need this extra stress, we have plenty.

So my advice, if a relative(near or far) or friend has a child diagnosed with anything, ask about it.  Do not pretend it is not there and do not pretend it is the end of the world or make light of it.  Please do not base your opinion of our parenting and our child on some other person’s experience.  If you really want to help, if you really want to continue our relationship in this new leg of our personal journey, then don’t say “if there is anything I can do”, the best thing is to just ask about our child, or this new path we are on. Just ask if there is anything you can read to learn more, so you can understand and help when the parents or child need it, even if the help that is being begged of you is as simple as a receptive ear.  Throw your expectations out the door. Even if you have experienced something firsthand, you have not experienced it from my unique perspective, or that of my husband or child, so put those expectations of all of us far, far away.  It can help each and every one of us. It can make our little world, your world, and the world at large, better a more peaceful and enriching place.

So, if you are a parent of a special needs child, or a special needs parent of a non-special needs child, or if you are a special needs parent of a special needs child please speak up! I’d be curious to hear what you have to think.  I’d also love to hear from extended family members (anyone’s family!) who have had a child diagnosed with a neurological/developmental disability and how you have handled it (for better or for worse, it can only serve ot teach, right?)

Big hugs all around…

xo

Bek

***p.s.  This, by far, doesn’t apply to every family member or friend in our lives. I guess it is those squeaky wheels that get the grease (or the can of whoopass, as the case may be).  If you have never even had the slightest thought along the lines of “I knew this would happen” or “It’s because they are isolated freaks” or  if you have never felt slighted because we did not participate in something that was focused on you or anyone outside of our mini- three person tribe,  then this stuff probably does not apply to you…  And you get an extra special thanks. Wish it were more, but yeah, you probably just read this and well: THANKS.  Big hugs.

Alex & The Time Machine

Alex & The Time Machine

Originally uploaded by CleverIndie

I was attempting to nap yesterday afternoon, as I was wiped out from the MRI contrast and as I had to take off the dexcom for the MRI I took the opportunity to test out my old (not expired, just previous) pain meds, which made me quite drowsy – which I do not remember, so maybe I was just drowsy because the pain was low and so manageable…  My eyelids fluttering closed is the signal for kiddo to find the noisiest game or toy to play at this end of the condo, while hubby disappears into the bathroom or suddenly is compelled to do something that he has had years to complete but right now he cannot he break focus from it.

So I usually don’t wind up napping.

Once I was out of bed, and annoyed, kiddo decided that he was going to nap. And he did. We could not get him up for dinner, homework, nothing at all….From 5 until 11 he napped…Jeff carried him to the bathroom at some point and decided that Alex was down for the night and closed his bedroom door…

At 6am today there was a very distressed little boy climbing into our bed. He was losing his marbles because he missed dinner and now the sun was coming up. Alex is very rule and schedule based. The world ceases to turn for him if something isn’t complete, like a ritual, like dinner. The new day starting without him having eaten dinner is somewhat like if you made a non-PDD kid go to school sans clothing. (assuming the non-PDD child isn’t in love with their nakedness the way many in the 2-4 year old set are, of course)… It’s not right, it’s not how things are done.

So he lost it. He sat on our bed and wailed as though someone has stomped on his heart and the pain was unbearable. We had not caught on just yet, and tried to tell him that it was ok, that clearly his body needed rest more than dinner and if he was hungry we could make him some toaster waffles.

But he needed dinner.
And the sun was coming up fast.
And the screaming grew louder.
(sorry to our understanding neighbors who never complain…you have no idea how much we appreciate your kindness.)

I toasted some waffles. Alex looked at them as though they were a squirming platter of venomous snakes.

Finally, absolute brilliance struck Jeff.

He declared that it was still night in our house. He shut the shutters, dimmed the lights, he heated up a slice of pizza and called Alex to have dinner in the den. Alex still wasn’t buying it, but he was willing to listen.

Jeff jammed a few bites of pizza into Alex’s mouth. Alex calmed down and declared that hey could now have breakfast.

*sigh*

But Jeff knows that Alex is more detailed than this and this freakout could potentially drag on for the entire day, or even days. Alex requires so much structure, but the world doesn’t always cooperate. We have been here enough to understand a little of how Alex functions, even if this is one trait I do not share with him, I am his mom and I see how his breakdowns become more than mental or emotional, they edge into the physical (when he was a baby we thought that the crying it out thing was still within normal realms when he was still crying after a few hours… and then he’d vomit… that was a clue that what works for some probably wouldn’t work for us, and not because any of the parties involved were being indulgent, we had a different kid, for better and for worse…This was one of our first clues…I wish we could have interpreted it appropriately…)

Alex’s favorite “game” these days is “time machine”…He pretends that Jeff’s walk in closet is a time machine (it has a sliding pocket door, that fits Alex’s description of a time machine)… Jeff finds it funny that Alex’s time machine doesn’t actually travel through time- but it does go to the moon, to the master bedroom, and to target so we can get more Annie’s Mac n’ cheese in the family size box (yes, this is one of Alex’s gems)….

This morning, Jeff saw the opportunity…He grabbed Alex’s hand and said “no! You can’t have breakfast yet! It’s night! You just ate dinner! We must go to morning! To the time machine!”

So we all got in and Alex pressed the appropriate buttons (pretend buttons) and made the time machine sounds… When we “arrived” he opened the door and stepped out and declared “Good Morning!” and was giggly and happy, like any other morning….

Needless to say, I’m putting “time machine” on our list of tools (which I will share, dear reader, soon…promise)…

The picture on the left is a chalk/chalkboard drawing hubby did of Alex in his time machine…He also made him a “pop up”/moving parts card of the time machine for christmas… There was a home depot gift card inside for Alex, so the two of them can build a model of Alex’s time machine…

I love the two of them so much….

I hope you have a wonderful day…. Perhaps if it’s not going your way, you could try the time machine trick? :-)

Best wishes,
xo
Bek

I love you with all of my…

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek