Tag Archives: asperger syndrome

The Tuesday Ten & I Am Loved.

11 Oct

The Tuesday Ten… Not happening. Sorry. Can’t do it. Is anyone surprised? Ok good. Perhaps I’ll post random facts or some sort of meme-ish shenanigans on Thursday… Thirty Thursday sounds like a stretch if Tuesday Ten is this daunting. Hmmm. I do have plenty to share. We’ll see….

Alex came home with this neat little “about me” packet he filled out when he started at his new school.

I asked him if I could share it on my blog and he said, “Oh Mama. Of course you can. You can put it all over your blog if you want to.”

I think this even tops the one from two mother’s days ago when he said I was pretty as a cupcake.

Such love in that kid. I make sure to tell him, especially when things are extra challenging, that I’m the luckiest lady in the world because I get to be his Mama. It’s important, to me, to make sure that he doesn’t go through life feeling like an imposition, or a 2nd class citizen, or as though my life is challenging because he has Autism. No kid should have to feel that way. It’s so damaging and endless. So I remind him all of the time how proud I am of him, and that I love him stinky feet and all. He says the same stuff back to me, which is unnecessary, but to me it shows that he’s getting some of this reciprocation thing. It’s also incredibly healing for me, as he is the first person in my world, in my immediate circle, to love me as me and not as a chunk of clay to be molded into something more desirable. So much of my life, starting at a very young age, felt like I was some piece of something getting thrown out and everyone around me tried to upcycle me into something useful for their needs, rather than helping me navigate the way to being the authentic, strong, unique me. So my kid’s admiration and love for me is a pretty gigantic thing considering how long I went without that trust, acceptance, and unconditional love. I don’t lean on him like a crutch, but he can’t help but inspire me to work harder and to be myself. After all, what would I be teaching him if I wore a mask all of the time?

xo

B

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Across the (autism) Universe…

8 Oct

 

 

 

Parenthood Arrays the Bravermans Across the Autism Spectrum | thAutcast.com.

 

I love this.  theAutcast.com explores how autism really exists in families.  Fantastic graphics explore how the 1 in x many is not black and white, but rather shades of gray (or blue, in this case)…

Beautifully done.

Check it out.

xo

B

p.s. I was sick yesterday and we had a lovely family dinner, this evening, with one of my favorite people, who we rarely get to see.  More later today…

My Happy Aspie

6 Oct

(That’s my Happy Aspie in his Happy Aspie t-shirt.  I have one of the shirts as well, but totally miscalculated the size I needed and now have a big gray t-shirt that could provide coverage should a hurricane strike and if post-hurricane FEMA runs out of tarps.  It’s bigger than big.  And I’m not some slip of a girl. I’ll be posting a link to these as soon as I have the link up and running.)

Anyway, Alex is HAPPY. Sorry for all of the caps, it’s not some weird acronym that means anything but happy, he is just that HAPPY!  I want to shout it again: HAPPY!!!  Ooops.  I think I just woke him up.  Shhhhhh.

I’ve delayed in telling all of you this, because I didn’t want to jinx it.

It has been almost 7 weeks that he has been happy, so I thought I could finally share as so many of you have offered shoulders, concern, kindness, and understanding over the years.

I reported, way back when, that his school was closing permanently.   It closed at the end of the Spring semester, leaving us without a school in August, and without a camp in between. We had no other options, and didn’t feel safe and secure putting him in a program for neurotypical kids with new instructers/camp counselors and I was all hopeful that I’d have more energy after my new RA meds kicked in.

So kiddo spent the summer at home, with us.  We just didn’t have any other options for him.  So it was a summer of nearly no activities, spent inside (it’s Florida. It’s brutally hot here and we are pasty folk).   I was fairly sick and in bed most of the time, trying to sleep and rest to get to my goal of doing one thing around the apartment, one thing with Alex, and one thing online everyday.  That may sound like a minimal amount of stuff but I am seriously begging for more spoons once I run out before mid afternoon hits.  The good news is that Enbrel has relieved a great deal of the pain from the RA, the bad news is all of my labs are screwed up and I’m still so fatigued that some days have me struggling to just pull enough covers back over to my side.  Kid and his dad spent most of the time either playing video games or locking horns, or a brutal combination of the two.  It was like no matter what, kid couldn’t get the benefit of the doubt or be understood and for some reason his dad’s understanding moved from accepting to denial.  I’m not going to say it is ever easy.  Kids with Asperger’s have Aspie/Autistic traits, but they are also still kids, and if they have been around typically developing/neurotypical peers, they may have picked up some habits, some attitudes that are less than desirable with the family.  Mostly though, it made me realize that while I have presented every possible source of material to his dad, given the prescribed “space to parent in his own style”, and I needed to intervene multiple times per day.  I started off exhausted and stressed and apparently my capacity for both was going to be stretched to the max.  There is a precarious balance, between being wife and being Mama and trying to get communication flowing freely and appropriately.  I have yet to find that balance, especially when I’m acting as sort of a berlitz go-between trying to translate Aspie into NT English and NT English into Aspie for two people who just could not get their messages across to each other, without hollering, crying, and stomping.   We survived.  I’m not sure we solved anything, but things have calmed since kiddo is at school, his dad is being much more mindful,  and my boy is hap-hap-happy.

What was that?  He is HAPPY.

We did something we swore we would never do while living in Florida (for many reasons).  We had him re-evaluated by the school district and we followed their recommendations.

They assigned him a school and a classroom.  He started school a couple of weeks late (long story). We went in the first day to see his classroom and meet his teacher.  They had computers, hermit crabs, a lego table, a smartboard, and a trampoline in the classroom!  He’s with 6 other kids, mostly boys, all with communication disorders.  I showed his teacher the inflatable wobble cushion we brought with us (really helpful for Alex at his old school) and started to explain and his teacher said “Oh good!  Here’s his desk.  You can put that right here.”   I didn’t even have to explain about how he needs to wiggle around in his seat to help him focus (yes, it is in his IEP, as well as other tools). The teacher knew this about my kid, about kids like him. They have a mini-trampoline in the classroom! He can jump on the trampoline to help with transitioning (which is what he does at home).  It was all amazing and felt like a whirlwind of fresh, cool, clean air swirling around us in those few minutes we spent in the classroom.

We went home.  We stopped at starbucks on the way back and it was strange. I don’t think we had been anywhere, sans kiddo, except for trips to the lab for blood draws every 4-6 weeks for me.  It was such an odd feeling.  We picked him up at the end of the day and he got in the car looking like he was about to burst into tears.  As we drove away from the school I asked him “how was your day at school?”  and he just bubbled over with glee.  He was trying not to cry when he got in the car because he was so happy and grateful that it was threatening to come bubbling out of his eyes, so he hid his feelings as well as he could and then BOOM!  It was like fireworks of joy and enthusiasm.  I felt like I could start thinking about compiling a list of of pros and cons so I can decide if it’s safe to breathe again maybe.  And then I will.  But it has been seven weeks.  Seven weeks and he has only reported a couple of issues, all related to the other kids in his class.  They all have communication disorders and are on the spectrum.  Naturally, they all drive each other a little bananas.  So we are working on strategies to deal with this, but for the most part, the daily notes from his teacher have been positive.

I know!  It’s so amazing fantastic wonderful that between this and allergies making my face feel like it’s been whacked by a frying pan, it’s surreal and almost trippy feeling. Am I hallucinating?  Was I dreaming?  I wonder this every single day, and everyday my kid runs into my room, jumps right on my bed, hugs my head so tight (he seriously wraps his arms around my head to hug me when I’m sleeping or in bed resting) and tells me he had another great day.

I’ve stopped pinching myself (the Enbrel makes me bruise and bleed very easily).

Anyway, just wanted to share.  Are you happily squeaking and hopping up and down like me?  (again, that could be the Enbrel.  It’s made from hamsters.  Really.)

Goodnight, my friends.

And Thank You.

xo

B

 

Bubbling fountains of exhaustion…

21 Apr

Plumbing/H2O conservation event

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.

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