Sunday, 31 March 2013

A Year of Progress

Today of course is Easter, a special holiday for all Christians.  It is a very special day for our family, especially this year, for other reasons as well.  Last year on this day my husband and I recommitted to each other.  So this is a huge milestone for us.  And one I am very proud to reach.

 While I'm talking about milestones, we saw several today for the boys.  We had a few issues throughout the day, but over all it went pretty well.  I was even brave enough to ATTEMPT mass with Jack this morning.  Let's just say that as we left the very crowded auditorium (we were at the "family" mass) before the service was over, several people patted my back and whispered "peace be with you".  Ha.  Still, last year, I went alone, would not have dreamed of taking Jack.  So, even though it didn't go, ahem, well, it's still progress.  I have made the decision to start taking Jack more regularly, but honestly, I think we need to go every Sunday except the holidays.  It's just too crazy, and way too much stimulation for him.  I was so angry with him for misbehaving, but truth be told, even I was overwhelmed by how crowded and noisy it was, and I don't have sensory issues.

The real "star" of the morning was Mr. Natey.  Last year, when we tried to get him to look at his Easter basket, he screamed and wanted nothing to do with it.  Never looked at any of it, in fact, I found his stuffed bunny in the china cabinet today.  This year- oh my God.  It was soooooo awesome.  He looked at almost everything and played with most of it, read books with me- actually walked over and gave me an excited hug.  I can't even explain how amazing this was.  John and I were grinning at each other like a couple of fools.  Now, the Easter bunny is much more savvy this year, we had a sensory Easter basket that contained things that he really loves, but I don't really think it would have made a difference last year.  We honestly didn't know what he liked at this time last year.  He was just that disconnected.

So I made a decision about future gifts for Nate too.  I'm not wrapping them anymore.  Gonna take them out of the boxes and set them up and make them as accessible as possible.  That's how HE likes it.

After our lovely church experience (read: fiasco), we headed over to Grammy and Granddad's house.  My cousin and his family were visiting from Oregon, and my little sister and her boyfriend came as well.  It was a great, boisterous, accepting crowd and we all had a great time.  My sister did an egg hunt for the kids, and Jack was really into it this year, and was really scanning for eggs.  More importantly, he was really interacting with my cousin's children, really enjoying playing with them.  And they in turn tolerated him calling peeps, umm, some other kind of bird, the name of which NONE of us could understand, and constantly talking about his parakeet, Dexter, who currently resides on his right shoulder.  Seriously, when we walked through parking lots all weekend, he refused to hold my hand with his right hand, as he did not want to disturb Dexter.  We did have one small incident where Jack had an issue- one of the other kids mentioned a being bitten by a deer fly one time and Jack became extremely paranoid that there was in fact a bug in the house and it was after him. Hands over ears, running around, and when I caught him, he was literally shaking.  Eventually I convinced him that even though I knew there were no bugs in the house, if there were, I had no doubt that Dexter would gobble them up, so there was nothing to worry about.  He bought it, sort of.

Nate had lots of fun too.  Grammy got him a new barrel of monkeys (green!) and there were so many of them that he literally couldn't reach to hook all of them together.  He ran around and was happy and pretty verbal, then fell asleep and slept through dinner.  I got a few good pictures of him looking at the camera during the egg hunt.  In one the lighting is really bad, but I just don't care because he is looking and smiling!

Things I am incredibly thankful for today:
-Reuniting with a cousin I hadn't seen in a long time and spending time with his amazing wife and kids
-My thoughtful sister who put together an egg hunt that all of the kids loved
-The fact that my sis and mom put together several "special" eggs for Nate that had sensory toys in them- he really loved that
-My mommy- who as always had an array of gluten free foods available for the boys- she consistently does this, but I do not take it for granted.  We are so incredibly blessed to have such considerate family members. 
-Nathan had an amazing day.  He was trying to tell me things all day, and at one point walked over with his new "Duck and Goose" easter book, handed it to me, and climbed into my lap. 
-Jack loved hanging out with the big kids and was playing appropriately with them and loving every second of it.  At one point I heard him tell them "I love you, you can't leave".  Sometimes that whole concept of children lacking a filter can be the cutest thing ever.

Happy Easter, hope everyone had a great day!

Thursday, 28 March 2013

A Social Victory

I took the day off today to spend with the boys.  We had a bit of a daycare snafoo because of spring break, and frankly I haven't had a non-sick day with the boys in a long time so we were due.  I really wanted to do something social for Jack- he's been having a bit of a rough year in that regard.  Very few party invites, which is a very common thing for kids on the spectrum.  In fact, our local TACA chapter is making their May meeting a literal birthday party for the kids to attend since they get to go to so few of them.  Jack has had a few boys in class who are not very nice to him, and bless his sweet heart, he doesn't understand just how mean the things they say are.  He comes home and tells me how they say things like he is the most annoying kid ever, or for him to get away and never come .back, and Jack just kind of laughs about it and then says the child is his friend.  In some ways, it's a good protective mechanism, but I hate the thought of my kid being unable to defend himself

So you can imagine that I have become very protective of him when it comes to friends.  We usually stick with kids that we have known for a long time, or the children of close friends of mine.  I called most of them up to see if they wanted to "play" today but everyone was pretty busy at the last minute like this.  So I took a deep breath and grabbed Jack's class list.  I was honestly terrified.  For those of you who do not have school aged children yet, it feels much like asking someone on a date, or making a new friend as an adult and "taking that step" to socialize outside of the usual group. And the last thing on earth I want is for Jack to feel rejected.  There is a boy in his class who has always been very nice to him when I have been volunteering in the classroom, and his mom seemed nice when I met her as well.  So I did it, I called.  And asked if they wanted to go to the local bounce place with us this morning.  I figured it was a low pressure setting, with lots of white noise.  And they came!

Jack had a GREAT morning and he and the little boy played very nicely together.  When Jack wanders off, this little boy looks for him.  He is very protective of Jack, and of other kids in general.  At one point, an older boy hit Jack when they were standing behind a structure and I didn't have a direct view.  Jack's buddy came running over to tell me, which just really touched me.  I couldn't really get Nate into actually playing on stuff, but he had fun running around anyway.  It's always difficult to decide how to broach the subject of Nate with new friends.  I have a "new" technique that's really effective.  It's what I like to call "out with it".  I just told the mom, and told her what to expect.  She was very supportive, and then she didn't have to wonder why he wasn't touching any of the bounce houses, or talking, or why he prefers to lie on the floor much of the time.  I guess I could keep it to myself, but I have a feeling that not knowing would likely make the other person more uncomfortable than knowing.  Because it's pretty obvious that Nate is not doing "typical" three year old stuff, especially when this family's two year old was there climbing all over everything. 

Anyway, the boys hugged goodbye, talked about the Orioles, and want to play again!  So so glad I took the leap after months of worrying.  Score one for Jack! and mommy!

Tuesday, 26 March 2013

Doubly Blessed

How do you choose?  Which event is more precious?  The beautiful new words coming from the mouth of your three year old?  Or the expression of unbridled joy on your husband's face when he hears it?

I have mentioned in the past that John and I had each "chosen" words that we set as goals for Nate.  Mine was "cup" which we were fortunate enough to hear quite awhile ago.  For John, it was simple- "night night".  We have been working on this seriously since Nate was about 16 months old.  We read more good night stories than the average parents because Nathan loves books with stars.  We practice with him, we role play saying night night to each other in front of Nate.  Sure there have been periods where our constant encouragement has lapsed, but really we have been trying for THAT LONG.

When you love someone the way a wife loves her husband, it is heartbreaking to see that LOOK, night after night.  That desperate desire to hear your son tell you night night.  Every time we start the routine I actually feel my heartbeat speed up a bit....please say it Natey!!!!  I have wanted John to have that for such a long time.  Of course the words are meaningful to me as well, but I know John's frustration more than anyone else does.  Just simple words....that's all he's praying for, right?

So when Nate, behind his thumb, whispered "nigh, night" this evening, I cannot even begin to describe to you the look on John's face.  And the feelings of relief and joy that I had.  Not because he said new words (although I was thrilled) but because John was able to experience that feeling of Nate achieving a goal, of knowing that Nate has gained something- because of him.  He said it to him one more time before John walked over to say goodnight to Jack.  And one more time to me. 

I know you can't read this Natey, but thank you so much for giving that to your daddy.  You just made his year.

Friday, 22 March 2013

A True Loss

We have all had them in our lives.  Angels.  People who come along and make our world a better place, give of themselves beyond what could ever be expected.  We had such a person enter our family about a year and a half ago.  Miss Anne.  And when someone becomes such an integral part of day to day life, such a source of comfort for the entire family, losing them is enormously painful. 

And that's the problem with people who are so giving- they always find new ways that they are needed, they are always looking for other ways to give back.  Miss Anne is moving to be near her grandkids, to provide care for them.  This is the second such angel we have lost to exactly this circumstance.  Those are some lucky grandkids, is all I have to say.  And I respect and love her for what she is doing.  This does not change the fact that the child in me would like to throw myself at her feet and beg her not to go. 

Anne entered our lives when our family was in crisis.  We unexpectedly lost our previous caregiver with no notice, and John and I were on the verge of separating.  The boys had just recently been diagnosed.  I had no idea how I was supposed to bring a new person into our home, how I was supposed to keep up the facade that everything was fine, while asking them to care for two special needs children.  It was a daunting task, and one I did not have the mental energy to undertake.  Not that I had a choice.  I mean she literally had to start and on her second day drive Nate to ABA 30 minutes away each day with Jack having a hissy fit in the backseat because, well, he doesn't do well with change.  I was working very hard to hide all of the other problems we were having, I was afraid it would scare her away.  I needn't have worried.  Anne has been incredible to our family.  She has observed Nate's therapies and tried to integrate the same techniques in her interactions with him, she has worked for countless hours with Jack on his fine motor skills.  She is firm and loving. She is a former teacher.  She has been perfect for my children.

Other than myself and John, she is the only one who knows that Jack is obsessed with tuna and fruit, the only one who knows that Nate likes his sandwiches best when the bread is first nuked for 10 seconds.  She is the only person other than mom and dad who Nate will snuggle up and fall asleep with.  For about a year, she drove my car way more than I did.  When Nate started taking the bus, she was flexible with her hours.  She has taken care of the boys while they were sick, while school was out, during half days.  She has learned to adhere to the boys' very strict diets.  Nate says her name!!! Ah-nnie.

Since all of the drama that has happened within our family, and particularly with our boys, I have developed a tremendous sense of loyalty to those who have stood by us.  To those who have not judged or abandoned us.  Anne is one of these people, and she will have a place in our home, and in our family whenever she wants one.  I have had an in home caregiver for the boys since the time that I went back to work after Jack was born.  It is a lot to ask of someone to care for your children while you are present in the home.  There must be a constant feeling of being "watched" or "scrutinized".  I know, because I have always felt it in the opposite direction as well.  I tidy the house before the daycare arrives (God help us now, lol), if one of the kids is tantruming when they arrive, I feel embarassed.  These people truly know me better as a mother than anyone else besides my children and my husband.  They see the constant circles under my eyes.  They see me cry when I am confronting new challenges.  They see me freaking out with joy when Nate says something as simple as "come, up".  And they cheer right along with me.  I feel a bit as though the rug is being pulled out from under me.  Like I will be driving this daytime ship solo for the very first time.  Because Nate will be in daycare- things will be much less personal now.  And for someone who works from home, and sees very few other people on a day to day basis, it's going to be a rough transition for me as well.  It's going to be pretty lonely.

What do you give to someone to thank them for being all of these things?  Is there anything that would even begin to be adequate?  I have been struggling with this for a few weeks now.  I mean, obviously, pictures of the boys, but that's just not enough.  I want her to have something special to remember our family.  I don't know if she even realizes how much she has meant to us.  She has been on this autism journey with us and has joined in our concern, our sadness, and our joy with the victories.  The other day it finally came to me.  I went to an art auction about 6 weeks ago, and almost all of the art was done by pediatric oncology patients.  We have a painting done by one of the kids.  But while I was there I also happened upon a display of windchimes made by children at the Key School, which is a local special needs school that caters mostly to children with autism.  And I felt a tremendous need to buy one.  I had no idea what I would do with it, but they were beautiful and I wanted to support the cause.

I figured out the perfect thing to do with it. 

Thank you Anne for all of your love and support.  Our entire family has felt the effect of your presence in our lives and we will miss you very very much.

Wednesday, 20 March 2013

A Delicate Balance

There are so many things I could be talking about, but tonight I am talking about Nathan's gut.  I put that video up the other night, one, to enlighten others, but two, to vent some frustration.  Because that was Nate on a pretty bad day.  He was not responsive at all, unable to focus, definitely in his world and unwilling to join us in ours.  I can't say that this is the norm for him anymore, which I am very grateful for, but seeing him like that gives me a lot of anxiety, makes me feel like we are backsliding.  The straw that broke the camel's back for me was the note I received in his little school communication book from his teacher yesterday.  It confirmed that they were completely unable to engage him at school.  For the full two and a half hours he was there.  Mommy officially freaked out. 

This is another one of those moments when mom has to ignore the reassuring comments of well meaning friends, sitters, etc.  "He seems ok to me".  "he focused with me for a while on the ipad the other day".  I know he did- he is completely entranced with any visual stimulation, so the ipad works most of the time with him.  But when I am struggling to get him to say "more" which was one of his first meaningful words, I know it's time for action.

I had my suspicions regarding the culprit of his nutty behavior and after some discussion today his pediatrician confirmed my line of thinking.  Yeast.  Glad we paid her a visit.  Nate had an ear infection about two and a half weeks ago.  I called the pediatrician's office, but of course it was Friday afternoon and they didn't have anything available.  The well meaning receptionist suggested Righttime Pediatrics, our local urgent care center.  I didn't feel like I had any other choice, Nate was screaming in pain, so off we went.  Our visit went smoothly, other than when the doctor asked me if I was "doing anything" about Nate's autism, at which point I had to resist the urge to jump across the exam table and bop him one.  Really I am glad that he asked, not every parent is running around looking for anything under the sun to help their kid- he was just doing his job.  The issue with places like these is that they don't know your child.  So he didn't know that I'm giving the boy a ridiculous number of supplements, have him on a special diet, and send him to every intervention we are financially capable of.  He also didn't know about Nate's history of yeast issues in his gut.  When Nate was first diagnosed with autism, we sent off a stool specimen and he had yeast overgrowth, which can intensify many autistic behaviors.  Major "symptoms", which of course can be other things (like happiness) are nonsensical laughter (I know how that sounds yes), more repetitive behaviors, further regression, etc. 

What is nonsensical laughter you ask?  Well, I can describe it well- Nate used to do it all the time, and has been doing it again for the past few weeks.  When you find your kid sitting in a corner looking at nothing at all and cracking up, then you will be able to as well.  It's disturbing. 

In any case, this well meaning doctor did what he does for every ear infection, he wrote a script for antibiotics.  Nate's ear looked really bad.  So he wrote for very strong antibiotics- two full weeks of them.  Antibiotics kill bacteria, including the good bacteria that prevents yeast infections.  Strong antibiotics= yeast overgrowth in a person who already has issues with this.  I was aware of all of this, I doubled Nate's probiotics while I was giving him the antibiotic, but clearly that wasn't enough.

This means that Nate and mommy will be going through yuckiness for the next several weeks- in the form of nystatin.  For someone with thrush, no biggie, you swish the stuff in your mouth.  For Nate...where do I start?  First he hates the taste and spits it all over me.  It's bright yellow and STICKY.  I strip us both down to our skivvies every time I give it to him.  If I didn't neither of us would own any unstained clothing at this point.  We did this for 3 months last winter.  November through February.  Really, we would have no clothing. The most difficult part is what it does to Nate physically- at least initially.  It's called yeast "die off" and it's not pretty.  Major diarrhea, mood swings, head banging, and initially, further regression.  This is due to the byproducts of the yeast being destroyed.  And it sucks.  I am hoping it won't be as bad this time, as we caught it pretty quickly. 

Anyway, please keep my Natey in your thoughts as we try to get his little gut balanced again.  Last time we did this we saw a different boy emerge.  Looking forward to seeing him again!  And from now on, prophylactic nystatin whenever he has antibiotics.  I prefer the annoyance of giving him something he hates to the heartbreak of watching him backslide any day. 

Tuesday, 19 March 2013

A New Best Buddy....

We have a new best friend in our house.  And by in our house I mean in Mr. Jack's life.  And it is just about the sweetest thing.  Ever.  I have mentioned that he recently has taken an interest in horses- he loves the Black Stallion movie and Black Beauty.  He has a horse book that I bought him and he looks at it all the time.
Anyway, about a month ago, we went to buy a birthday present for a little friend at the Disney Store and Jack saw the stuffed horse "Angus" from the movie Brave.  He had to have it.  I am a sucker for anything that is not an airplane, shark, robot, you get the idea, so I caved.  I figured it was something he would play with for a few days and lose interest in. 

Instead, I am watching Jack claim his first true "wubby".  It's a beautiful thing.  He has carried airplanes and robots all over the place, true, but these things were always just objects that he was obsessed with.  He has renamed Angus "Black" (like the black stallion), although he does still answer to Angus when mommy messes up.  For the past two nights, Jack insists that we plug the sink and run water when he has his bath so that the horse can have a bath (in the sink) too.  He carries him everywhere we go and sleeps with him every night.  When he got sick the other night the first thing he wanted me to do was make sure Angus was ok.  This is so different from his usual frantic fixations on things.  It's more like....a relationship?  He worries about him and loves him.  This is really huge. 

Sweetest boy.

Monday, 18 March 2013

The Benefits of Being Sick

Haven't posted about what's going on with us in awhile.  Long story short= SICK.  Various types, various family members, various days.  Daddy first got a man cold.  Then Natey and mommy got it on Friday.  And it was a miserable one- fever included even for the grown ups.  Nate holds onto this stuff forever too, blah.

Yesterday I was going stir crazy.  Because while everyone else leaves the house daily for work, or kid activities, or school, I never ever leave.  And it can get a bit....claustrophobic.  On the weekends I try to be out with the boys quite a bit, I just need to see other humans.  So Jack and I headed across the bridge to visit Grammy and Granddad.  Jack had a rough night Saturday night, had been up on Sunday since about 4am (um, me too) and so I wasn't THAT surprised when he passed out in the car.

I was, however, surprised when I carried him into their house and he walked over to their couch, curled up and fell back asleep....and stayed that way.  For almost 3 hours.  My mom and I went shopping, came back, and he was still conked.  It took 3 tries to get him to wake up.  I just kept looking at him thinking, what's wrong, what's wrong, what's wrong.  This kid never gets sick, like, never.

We went home and he told me his tummy hurt.  OK, well we're used to tummy issues so I told him to go to the bathroom.  And he did, and he said he felt better.  But he wasn't asking for food every 3 minutes, which is his typical MO.  I was a bit worried.  Then, after his bath, he was wiggling his front tooth, went into the bathroom to look in the mirror, and came out, without the tooth.  Where is it, we asked.  Dunno he responds.  We couldn't find it anywhere.  Here is our little toothless wonder

So after all of this, I can't even say I was surprised when I hear "mommy, help!!!!" at about 11pm last night.  I went in to check on him and found basically everything he had eaten all day all over the room.  Poor boy!!!!!  It's times like these when my husband is very grateful to have me, the former oncology nurse, for a wife, I know.  What he doesn't quite get is that I used to gag all the time at my job, I just hid it well, and called for housekeeping if it was really bad.  Well this was REALLY BAD.  Ummm.....housekeeping?  The steam mop can't save me now!  Oh well, I have certainly seen worse.  On the plus side....I found his tooth? 

Why did I call this post "the benefits of being sick"?  After this little story?

Like I said, Jack is very rarely sick.  He almost never slows down.  And the boy is FAST.  So I have to be honest, I just love it when he does slow down.  And snuggle with me.  And listen to me.  And talk to me.  Like, full conversations.  Without twenty prompts.  I hate him being sick, but I love love love this.  It's kind of how I imagine it would be without the ADHD like symptoms he so often exhibits.  I had to work today, have taken too many sick days lately, and he was so stinking cooperative.  At one point, I had a conversation with the medical director while he had his head lying in my lap.  And he didn't interrupt.  Well holy crap!  That never happens.  I know most kids interrupt, but recall my stories of locking myself in my office and turning on the dryer to drown out the noise of him screaming continuously?  Yeah, this was a really really nice change.  I got my full day of work in.  It was challenging, I'm not gonna lie, especially when Nate came home, but I did it!  I do really hope he feels better in the morning (he conked out at 6pm tonight- NEVER happens), even though my coworker reminded me this morning what comes after this peaceful sick period----- the roaring return of kiditude.  Ish

The Trouble With Speech

OK, I have been trying to explain this for a long time, but feel like I fail miserably b/c until you see it, it's just hard to grasp how a person can not understand that speech is needed to communicate.  So today, I decided to show you with a video of me trying to ellicit some speech from Nate.

Some disclaimers:
Nate is having a rough day today
He had already had his snack and wanted more, so he was a bit less motivated than he had been about 15 minutes before.
I feel like I am a cruel mama for denying him for this long, I wanted him to at the very least look me in the eye and say "more" which is not usually that rough to get out of him, but he has not been doing so hot lately.  Sometimes I get "I want more" or "I want chip" so of course I would have been good with that too, but today it just wasn't coming

I feel mean dropping the bowl like this over and over again but it serves a significant purpose- the sound and the movement get his attention.  You can see just by watching him that me verbalizing "tell me what you want" is not going to have enough impact.  Saying it with an action, that gets him.  So that is the technique both John and I employ with him.  You can imagine how frustrating it would be- to spend 5 minutes trying to have one meaningful communication.  For both parent and child- you can hear Nate's frustration.  And mine.  Unfortunately, the single most effective way to ellicit communication is to withhold the desired object until he uses his words. 


Friday, 15 March 2013

Beware the Autism Mom!

A friend of mine reposted this on facebook earlier this week.  I have read it MANY times before, but never before have I felt so much like I have become this person.  This mom.  And I am not ashamed, I just feel as though I have been through my initiation and I am no longer willing to take bullshit.  I have not felt like hiding because of my kids in a long time.  We are who we are- take that!

Last weekend I took the boys to the mall to get some spring clothes for Jack.  He was in a bad way that day, hadn't slept real well and was having horrific poop issues.  Which is, like for many autism families, an ongoing saga in our house.  I smelled something while I was trying to grab as many t-shirts and pairs of shorts as possible before the inevitable meltdown that comes with being in a busy place doing something that he would never choose to do, when I smelled it.  I looked at Jack and he said, "no really, I just farted", then he burst into tears.  I felt terrible for him, as I know how sensory related this all is, that it really isn't his fault.  We are standing at the checkout, he is hitting every button on the credit card machine, he is talking talking talking.  I physically removed his hands from the machine about 10 times, we had to keep redoing the transaction.  Meanwhile Nate is blissfully sleeping in the stroller (thank God for small miracles).  The cashier was making faces at us, I could tell she was annoyed.  The cashier standing next to her smiled at me and said "don't worry, I know what's it's like, I had two boys too".  I smiled back, understanding that this woman was trying to show empathy- however this did not stop me from snapping in that moment.  That part I feel a LITTLE bad about.  I responded, "oh, did they both have autism too?"  It wasn't directed at the nice woman, it was directed at the biotch who was making me immensely uncomfortable with her looks.  Enter awkward silence.  So I grinned, told Jack it was time to go and headed to the bathroom to deal with the disaster I knew was awaiting me.  Let's just say we drove home with Jack going commando.  Hey, at least most of the spring shopping is done.

The below post is from the autism mom blog Laughing Through Tears.  It is such a perfect representation of how I feel so often now that I just had to share. 

We’ve all been there.  Every autism mom has had at least one encounter with some insensitive jackass who insulted our children or criticized our parenting.  It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.
Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge asshole they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.
Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made.  Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that bitch in the bookstore deserved it!)
These people who attack us are horrible because they have no empathy.  They’re shallow people who probably lead miserable lives devoid of depth and meaning.  They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.
 Top Five Reasons You Should Never Piss Off an Autism Mom
Five.  We’re Already on the Defensive
What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No shit, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No? NO?  I didn’t think so…
In other words, we have experience with assholes like you.
Four.  We Are Not Socially Well-Adjusted
We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.
Three. We Know How to Fight
Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?
Two.  We’re Already Angry
Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at god or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?
One. We’re Sleep Deprived
Some of us haven’t had a good night’s sleep in years.  Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

AMEN fellow blogger, A-MEN. 

Monday, 11 March 2013

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

Sunday, 10 March 2013

Sleep and the Time Change

Ahhhhh...daylight savings time.  I am sure I will appreciate the extra sunshine.  I planned carefully last night, put the boys to bed 30 min early (splitting the difference) and hoped for the best.  I needn't have bothered.   See, Nathan is very flexible and will have no issue going to bed at a slightly earlier time tonight.  And Jack?  Well.....

Daddy has been out of town this weekend on a guy's trip.  He made a booboo before he left.  Which is really not fair to say.  It is impossible to know how things will affect Jack.  So scratch that, he tried to give him incentive to be good for mommy.  He told him that if he was a good boy, daddy would bring him back a little treat.  Unfortunately, our son, our sweet boy with aspergers, can take a thought like that and let his very busy mind run wild.  There have been many times in Jack's short life where John and I have gotten really mad at each other for something either of us did with Jack that triggered one of these obsessive periods.  I have come to realize over time, that although we are better at tempering our statements (for example, if we are going somewhere he is going to be excited about, we tell him as we are pulling into the parking lot in order to ensure sleep the night before), some things one just cannot predict.  So, on that note- Jack was up from about 1am (old time) on last night asking about every 10 minutes if dad was home yet and what did he bring? 


So planning for daylight savings time was not necessary- Jack will likely be exhausted no matter what time he hits the hay tonight.  And ditto for me!!!

Diagnosed in 2007, hahaha

Friday, 8 March 2013

A Great Way to End the Week!!!!

This afternoon I received an email from Jack's teacher entitled "today".  I have received many such emails by this point in the year, similarly titled.  The body usually contains "Jack fell asleep twice", "Jack refused to...." or "Jack broke....".  So ok, my heart sank just a little.  Imagine my surprise and delight when this is what it said:

We had a celebration in our reading group today because Jack wrote the words "do" and "this"  completely by himself on a white board with a dry erase marker!!!! Whooohooo! :))))

Well halleluiah!!!  Not only is it not bad news, it's really great news!  Today marks one week since I started doing "alternative homework" with Jack on the IPAD, which is all fine motor work for about 30 minutes a night.  It's a bit easier to write on the ipad (you don't have to press down as hard) and it sure gives you a heck of a lot of encouragement in the form of cheers, confetti, funny scenes to watch, etc.  I don' think this little success story is a coincidence.  And it's such a testament to what a great teacher he has- how encouraging she is. 

So how does one celebrate with two gluten and dairy free children?  Chick Fil-A of course!  And thrill of thrills we went "in" the restaurant, something Jack is always begging for and mommy almost never does.  Just a heads up for any other mommies that have their hands full.  If you go pretty early the cashier will come to your table if you are by yourself with little kids, take your order like at a sit down restaurant and bring the food out.  At least at the one we went to tonight.  Nice!!  The boys had a blast in the little play area.  Nate really just ran laps and laughed, but he was really happy.  Jack was playing well with the other kids, which was really nice to see...

Here's hoping the trend continues all weekend!  

Thursday, 7 March 2013

Bummer Girl

Having a moment, so bear with me.  As I have mentioned before, I have Nate with me in the afternooons.  He was just standing next to me while I was on the phone, doing a lot of verbal stimming, which comes out like very loud humming.  I turned to ask him to be quiet- and then it hit me.  He has no idea what that means.

Don't get me wrong, a year ago, he wouldn't have been standing next to me, he would have been wandering.  I know that's an improvement.  But he's three.  3.  And I can't say these simple words to him with any confidence that he comprehending what I am saying. 

I have been heading down this road again with him lately- getting depressed.  And that's when I do that very dangerous thing- I go back and look at all of the pictures of him looking at me.....before

Bad idea.  Really bad idea.  Deep breaths.  He is ok.  Deep breaths.  He is currently pulling on my sleeve screaming b/c he wants tortilla chips and I am not getting them fast enough. Progress.  Huge progress.   It's all ok.  Just needed to vent for a minute.

Wednesday, 6 March 2013

"You Don't Understand"

I will start by saying that I abhor that statement.  Not because it's untrue, but because of what it implies about the person you are speaking to.  That they are too naive to grasp what you are going through, unable to listen to what you have to say or offer any legitimate opinion about it.  I used to say this a lot when I was first a mother (ahh, the good old days)- I had an argument with my little sister at one point about it- and I can say I genuinely apologize.

I should know better.  I am a nurse.  I talk to and comfort people all day long who are in situations that are beyond anything that I've ever experienced.  Transplant patients?  PARENTS of transplant patients?  This is who I talk to every day. 

I don't understand what they are going through.  How could I?  And my sister didn't understand what I was going through with two little kids and a full-time job.  How could she?  Understanding isn't everything.  Empathy is.  I have heard from friends and family a few times that they are hesitant to talk about their problems around me anymore because they seem like nothing compared to what our family is going through.  Bull pucky.  Yes, problems are all relative, that is true, but that is of no importance to me.  If I love and care about someone, I want to know about their problems, I want to talk to them.  For God's sake, I remember some of the stuff I used to get upset about- it does seem minor now (bad hair day, fat day?)- people listened to me anyway.  The gravity of my issue wasn't the point- the support was.  I am well aware that although our family's problems are significant, they are not earth shattering in the grand scheme of things- my children are safe, we have a roof over our heads, we have jobs.  I guess I would hesitate before talking to a cancer patient about my boys for this reason- but you know what?  I worked with cancer patients for quite a while, and they want to talk about something else besides cancer!  Same goes for my transplant patients.  How many inquiries about my personal life do I demure to answer on a daily basis with my patients? MANY. Everyone wants to think about someone else's problems at times- if nothing else, it takes their minds off their own.  I'm no different.

I have wonderful relationships with 95% of my patients.  We joke, we laugh, they cry, I listen, and I love it.  I feel that I am very responsive to my patients' needs.  So when I got an angry voice mail today saying "you don't understand, stop judging me".......on and on....I almost fell out of my chair.  I had bent over backwards for this person- worked my butt off to help them obtain services that would not normally be available.  Now it turned out that this person thought I wasn't returning their calls when I was- I was calling their old phone number, they had changed it without mentioning it to me.  Easily cleared up.  But it left me shaken for some reason.  "You don't understand."   I don't claim to understand, but I am committed to helping in any way that I reasonably can, and judgement does not and cannot come with this territory.  That goes for my friends and family too. 

 I know that those of you who are so supportive of us share this same view.  I get that you don't fully understand- how could you?  I hope you never, ever do!  But your empathy is priceless to our family, and I love each and every one of you so much for being there. 

Sunday, 3 March 2013

Steam Mop Madness

I think I am scaring my husband.  Seriously.  I have mopped the whole downstairs twice this weekend- with a big smile.  This is why

I am in LOVE!!!!!  I have never been a woman who got excited about an appliance (except my dyson), but this is AMAZING!!!  I told my mother in law that I might just love it more than my children.  Kidding, but still.  We have two kids with fine and gross motor issues (aka they spill A LOT), a labrador and all hard wood and tile floors.  The boys have sippy cups that leak all the time.  I allow this because the cups almost always have supplements in them and it's more important that they ingest them than me having clean floors.  However, it has been driving me crazy.  Mopping was not helping, scrubbing on my hands and knees wasn't helping.  I would finish, wait for the floor to dry, try to walk across it and inevitably feel a sticky spot.  I came close to throwing the mop across the floor.  The Swiffer was even worse- completely useless.  A couple of my coworkers were talking about their steam mops, and even though one of them was a bit disappointed with hers, I was feeling desperate.  So I pulled up Dr. Amazon.  I got the mop on last Monday and have done the entire downstairs about 3 times in the last week.  All times added up probably took less than an hour.  And my floors look awesome!   You just dump water in the little tank, turn it on, wait 30 seconds for it to heat up and basically use it like a vacuum.  It sanitizes the floors with steam.  This particular one has a tank for cleaner as well, but I only used that the first time.  However if you do use it, you can control the amount of cleaner it releases- floors are never soap sticky either.  The mop pads can be thrown in the washing machine.

My life is busy and stressful.  It is amazing what something as simple as clean floors can do for the psyche!!!  Anyway, completely off topic but very worth sharing- anyone who mops go get one!  Seriously

Our New Tools

Quiet weekend here, although that's not how it started out.  Natey and I spent Friday evening at an urgent care center after he woke up at 4pm with a REALLY nasty ear infection.  So now have added antibiotics to the mix, but he has improved rapidly and seems to be a pretty happy camper today.

I have tried to spend a fair amount of time doing some enrichment stuff with the boys this weekend.  We have been trying out apps on the IPAD and we have found a few that both boys seem to really enjoy.  Nathan is getting in on the action- there is a shape sorter app that cheers and throws confetti when you get the shapes in the right spot, and he seems to dig this.  We recently purchased the chair and tray that his home visit therapist uses, as it is a great way to help him focus.  I have been putting him in this and working on the shape sorter there.  It really really helps.  Here is a pic of the contraption:

Probably the biggest thing we are using the IPAD for right now is to improve Nate's communication.  I downloaded an app called My Choice Board and it seems to be pretty user friendly.  It is basically a PECS (picture exchange communication system) that is digital.  The advantages of this are many- you can't lose the cards your kid needs, you can change them as frequently as needed with very little effort, and rather than with most PECS programs, you can use actual photos instead of a nonspecific picture of a toy.  This is important because Nate is really not able to generalize objects yet.  For instance, if he wants HIS ball, he will need a picture of that exact ball in order for him to understand what he is asking for- not just another random ball.  Obviously the goal is to get him to generalize, but first he needs to identify objects by name consistently.  And we are not there yet.  I am making each "board" only 2 or at the most 3 choices, as I don't want to confuse him.  Another handy feature is that you can record your voice naming the object, so that when the child touches the picture they hear mom's voice saying it's name.  We are just familiarizing him with the program at the moment, I am really really hoping this helps him communicate his needs and decreases his frustration.  He wanted chips today (he loves tortilla chips with a passion) and when I told him all done he proceeded to hit me about 5 times.  I repeatedly grabbed his hand and said no hit, but he was really ticked off and would start again if I let go.  I DO NOT want to go down this road with him- how do you discipline a child who has such limited comprehension at this point? 

Anyway, the apps we are using most with Jack are fine motor related.  There are many cool apps that work on letter formation. Jack has always had issues with this, one of the major problems is that he refuses to form his letters "correctly".  He often insists on doing it backwards.  These programs will not allow that, physically they won't.  So he is forced to do it the "right" way.  There is one app called "sky writers".  It consists of an airplane that he moves along the outline of a letter- when he does it correctly a trail of clouds follows the plane.  Yes, I'm serious.  VERY effective.  There is another app which we haven't actively used yet called choiceworks- similar to pecs in that it uses pictures, just in another way.  It's a picture schedule.  Something that will benefit Jack greatly- it will help ease his anxiety by showing him what's coming next.  I plan to try it first with our morning routine- I want to see if it can help decrease the number of tantrums he has before school.  Right now I would say he usually has about 4 before he walks out the door for the bus at 8:40.  Waking up, taking supplements, getting dressed, choosing breakfast, choosing a program to watch before school, and then the usual meltdown when I tell him it's time to leave.  I guess that's more than 4.  The program also has a timer- I think I will set it for the last 10 minutes before it is time to leave to see if it helps him "get ready".  Fingers crossed

As with all "interests" with Jack we have to be careful with the IPAD.  He could easily get obsessed with certain things.  For instance, we have this animal identication program for Nate- but Jack is obsessed with horses and if we let him he will sit there and hit the horse picture until the cows come home (ha).  He is also getting really into the wii- air games of course.  Mommy cannot deny it, she too is obsessed.  It's FUN!  Of course we have different goals- I am trying to find all 80 destinations, and Jack continues to look for unique ways to crash.  But he is evolving- he has figured out how to land the plane without crashing it on the beach and in the water (it's a seaplane).  Back to his fixations though- the game takes place in a cluster of islands and at one point a humpback whale popped out of the water.  If you recall, this is a past "area of interest" for him.  He proceeded to beg me to play the game for him over and over again until we could find the whale....again and again and again.  I had to nip that in the bud after a bit.  Despite this, I can honestly say that this game is great for his fine motor skills and his focus.  Landing on the water takes some serious manuevering- and so does crashing into a specific window on a building.  So that's progress. 

Saturday, 2 March 2013

Changes for Natey and Mommy

The end of this week has been a whirlwind of sorts, so so busy these days.  Even at work it’s the like the transplant Gods have gone crazy and I am being slammed with new requests and new patients to assess.  I don’t mind the busyness, but if we could keep it to one or two areas of my life at a time that would be nice. 

Yesterday I went to the special needs care center that I am considering for Nate- it is called the Cisco Center.  I have mentioned it before with regard to Jack and the little soccer camp he attended last summer.  I will be honest, my goal, when I decided to work from home, was that I would never have to put my children in a daycare center, that I would keep their care in the home.  I had several reasons for choosing this option- more individualized care, fewer germs, easier breastfeeding, and close proximity for hugs throughout the day.  Another biggie was that I was terrified of daycare- especially when the boys were infants.  I mean, how would they tell me if someone was mistreating them?  And of course, this aspect has unfortunately not changed with Mr. Natey.  He can’t tell me- so that is a big concern.

Right now, Nate is in school daily from 8:30 until about noon.  On Mondays my mom has agreed to come to our house so that the home visits with Miss Gwen can continue.  So that leaves Tuesday through Friday afternoons.  Luckily, this center is flexible and willing to do odd days, and half days.  Huge blessing there.  And the bus is willing to drop him at home on Mondays and at the center the rest of the week.  I call this facility a daycare because right now that is the purpose it will be serving for our family.  But it is much much more, and Nate will have the opportunity to take advantage of some of the other benefits that come with going to this center.  It is run by a retired special education teacher and his wife who is a speech pathologist.  She does speech therapy sessions there, they have a social skills group, they have a picky eaters group (huge issue for kids with autism), they are setting up an OT room with a zip line and swings.  They also do life skills type things like cooking, and they are a certified pre-K as well and teach different subjects each week.  During the summer they have a variety of camps, which the boys would be able to participate in if they are there for daycare at the time.

Did I mention this place is a mile from our home?  After agonizing about this for the last 4 months (since the sitter told me she was moving), I have come to this conclusion.  The benefits of sending Nathan here far outweigh the risks.  The center has an excellent reputation, heck even Nate’s bus driver seemed excited to hear he would be going there.  Nate’s current teacher is coming to the center to observe some of her students with behavioral issues- b/c they don’t have issues when they are at the center.  Two of Nathan’s classmates will be with him every afternoon.  He may not notice this yet, but I am hopeful that he will in time. 

Letting go of the time I get to spend with Nate during the work day is going to be extremely difficult.  It has always made me feel a bit better about having to work, and been reassuring to know what is going on in my boys’ days.  But the time has come for me to sacrifice this time.  Because Nathan is going to benefit tremendously from being in this setting- and right now that is just more important for him.  And he will still see me before school, after work and on the weekends.  I know that many kids are in this situation from the time they are 6 weeks old.  I am lucky that I have had this time with them.  And I am lucky that they will still be close by.

There is another aspect that I need to mention.  For the past 6 years, I have had at least one child, a full-time job, and very part-time daycare.  I have become an expert juggler.  I am not trying to toot my own horn, it is simply true.  I can do my work rapid fire, I can sit on conference calls while folding laundry, I can mute my kids screaming while having a discussion with the medical director.  I can find the time to go here and there and everywhere in the midst of my work day and still feel at the end of the day as though I have given my job my all.  Many moms feel torn between work and home life, but this experience has been a pretty extreme case. The amount of stress I am under on a day to day basis- the feeling that I am splitting myself in two (and sometimes three and four) is very real.  Plus, being the parent nearest the boys during the day, pretty much all of the appointments and meetings fall on me.  And we are talking 3 days a week most of the time.  I can’t even fathom what it will be like to be in my home office and have no other responsibilities except my job.  Right now, my daycare is there from 12:30 to 2:30 each day.  That’s it.  And of course Nate is in school in the morning.  But I work from that point on until 5pm with one kid until 4pm and then both boys until 5pm.  If I pay for a half day at the center for Nate, I can pick him up at 5:15.  I don’t think I will go this late every day, but the point is, if I am having a crazy day at work, I can do that.  I won’t have to wait until the kids go to bed to put in more cases if the day is busy.  I can just do my job.  Wow.  I am thinking that this might allow me to be more “present” with the boys when we do spend time together in the evenings.  Still, the thought of packing my three year old a lunch makes me a bit sad.