Wednesday, November 30, 2011

Happy Bloggerversary To Me

Today marks one year since starting this blog.  I want to say thank you to everyone who actually takes the time to read my ramblings, complaints, and blessings.  It really means a lot to me.  I started the blog as an outlet during a tough time after Isaac's official diagnosis and as a way of letting others in on our journey with pdd-nos.  Since then, I've been blessed with many emails, private messages, and comments from family, friends, and strangers giving their support or seeking some resulting in a bigger community or "village" than I ever thought possible to raise Isaac in.  This has been the biggest highlight of all. 

Other highlights include author Kim Stagliano commenting on a post or two. Hey- a girl likes to rub keyboards with an actual published writer now and again!  Also, being asked to participate in the S-O-S Best of the Best was very flattering.  But what I love most about this blog is being able to look back to see how far we've come since Isaac's diagnosis.  I'm grateful for that and for all of you.  Here's to another year of blogging and making progress with my love, Isaac.

Sunday, November 13, 2011

It's the little things

A night where Isaac helps make, tries, and likes a new food (mashed potatoes)? Check.  This happens once every six months- maybe less.  I'm a firm believer in re-trying things, because even though it might take awhile (or years) my picky eater eventually acquires new foods.  Extra points for it being a vegetable.

Eating cooked rather than demanding raw broccoli? Check.  Sure he waited until it was ice cold to eat it, but that still counts, right?

Sleeping through the night after a night of night terrors? Check.  Packed the protein in yesterday and he had a much better night of sleep.

Making it through Sam's Club with the terrible lights and TONS of people without a meltdown? Check.

Reading a couple of sentences from a book to his grandparents over Skype and making this mom really proud? Check.

What little things are you thankful for today?

Friday, November 11, 2011

Night terrors, bug bites, and other Friday night fun

It's not quite 11pm and the count of night terror episodes is already up to two for the night.  We've been waiting for a night like this since Isaac started a round of Amoxicillin earlier this week for a rogue bug bite.  Rogue meaning that it had the start of cellulitis.  Bad reactions to bug bites are a fun thing he inherited from me.  Aren't genetics grand?  Amoxicillin seems like a pretty low-key medication.  I mean it's one of the few prescriptions that pharmacies hand out for free.  They even flavor it and slap some red dye in it to make it more kid friendly, and for most kids it's probably just fine.  But for a kid with a funky gut it's both helpful and harmful.  Being on Amoxicillin means that Isaac cannot take his daily dose of probiotics that help keep his gut yeast under control.  I've been trying to be good about giving him more fat and protein to help with this during this time, but it's pretty inevitable that about half way through a round of Amoxicillin the yeast monster rears it's ugly head and the red dye catches up with him which results in a night of my little boy screaming, crying, and rolling around his bed off and on in his sleep.  We've learned that it's near impossible and not helpful to wake him during these night terror episodes.  I have to say that I have a really hard time seeing him like that- it makes me want to cry.  Luckily, Andrew is in tune with the sensory side of Isaac's issues and comes to the rescue right when I feel pretty helpless.  Tonight he tried applying pressure (kind of like joint compressions- for those with OTs)  to Isaac's back and torso and calmly shhhhhh-ing him repeatedly.  After a few minutes of this Isaac eased back into quiet sleep.  It's nights like these when I wish we had a weighted blanket.  Instead I laid my rice pack on his back for some consistent pressure/weight.  It's like battening down the hatches before a storm- except there are no Johnny Depp looking pirates around to swab my floors.  That would make this Friday night a little more fun.

Wednesday, November 9, 2011

Going Granola: Managing without medication

There are no absolutes.  These aren't just the words of a liberal blogger- they are truth to anyone living life outside of a bubble.  These words are especially true of those living on the autism spectrum.  Our experience with pdd-nos and our son will not be a carbon copy of yours.  I can and will only speak from our own experience.  I guess that's the preface I want to put down while participating in  S-O-S Best of the Best, Edition 12: Medications and Their Use with Special Needs Kids.  I am honored to have been asked to contribute to such a helpful site. 

To begin, I might as well come right out and say it; we don't use medications to treat any of Isaac's issues in relation to being on the spectrum.  So far, thanks to his diet, we haven't had to, and I have to say I'm glad.  While I'm not so "crunchy" that I won't eat at McDonald's, I am someone who opted for a tubal ligation over being on birth control.  I'm just not a fan of side effects- known or unknown.  Trust me, I went the biomedical route for Isaac with skepticism, and continue on it occasionally grieving the easy days of just sending him on his way with a cup of Goldfish Crackers like any other warm blooded American kid.  However, The Diet is our anti-drug.  And as my husband so delicately puts it, "the only side effect of a gluten free/dairy free/ Feingold diet is that it's a pain in the ass."  I know his angst is rooted in the cost, preparation, and availability of food for Isaac's very tailored diet.  He's almost over wanting to crawl under the table while I grill unsuspecting servers about ingredients and how food is prepared when we are out to dinner.  Almost.  But the reality is that changing Isaac's diet has kept us from an almost certain need for medication to treat hyperactivity, extreme mood swings, night terrors/seizure-like episodes, and sleeplessness.  Not to mention all the skin and digestive issues he used to have.

Not everyone has this experience, and I can definitely see where medication would be necessary and helpful for many kids with special needs.  For our son, removing dairy, then gluten, then certain fruits, vegetables, and dyes from his diet almost immediately remedied the problems listed above.  Adding a probiotic powder to the regiment is the closest thing to daily medication that Isaac receives.  The best part of a diet versus medication for us is that we get to tweak and adjust it immediately and according to his needs.  There is no waiting for a doctor, psychiatrist, or any one else.  When I notice that Isaac is "off" for days in a row I know it is time to adjust his diet to get him back on track.  Somehow, someway, we were paired with an occupational therapist who was also a trained nutritionist when Isaac was receiving services from Early On, and she stocked us with the information we needed to go granola. Today we're not only managing his pdd-nos, sensory processing disorder, etc. without medication- we're thriving.  And for that, I'm grateful.

If you would like to know more about our journey without medication, please visit the posts below:

For a basic overview of our dos and do nots with food:

Our experience and approach with removing dairy:

Our experience and approach with removing gluten:

About yeast issues: 

An article I wrote about the pros and cons of a gfcf diet:

An article I wrote introducing the Feingold diet:

Monday, November 7, 2011

A parent/teacher conference story

You know those credit card commercials in which they list "priceless" things?  Well, I got one: A parent/teacher conference that doesn't make you want to slide under the desk and buy a box of doughnuts and bottle of wine on the way home?  Priceless.

I think what made this conference tolerable to begin with is that it was with the two people from school that know Isaac best; his teacher and his social worker.  No OT, speech therapist, or weird old guy there to whisper amongst themselves while I was sitting right there.  No feeling like I had to defend my son to people who only see him once or twice a week.  In fact, the three of us had a good laugh over some of Isaac's trademark antics.  The boy is stubborn when it comes to doing things his way, but is slooooowly becoming more flexible.  He likes to argue with Miss Minda about what comes next in the schedule, but will double check his picture schedule and backhandedly admit that she was right.  "Music IS next, Minda!"  "Yes, I was right then, wasn't I?"  Isaac scowls and will not fully admit that she was right.  I wonder which parent he inherited this trait from.

I loved hearing the words, "I have no concerns about your son academically."  Apparently there are two books in the classroom that he can read cover to cover.  Also, they use in the classroom just as we do at home.  Miss Minda is making sure she keeps feeding his interest in learning to read.  They have "book boxes" that they share with one other student.  They take turns carrying their box to a comfy spot to read basic beginner books together.  "A is for apple" type books.  Isaac is currently sharing a book box with Austin- the boy is his class that is pre-verbal, and to my eye- more classically autistic.  Minda told me that Isaac is excellent with Austin- which was my favorite part of the meeting, the news that made me most proud of my little boy. We've talked a lot about being nice and trying to help Austin when he is upset and crying.  I'm glad our talks are transferring to the classroom.  I will take my sometimes socially awkward, but very kind kid over a bully any day.  Flexibility in routine, some motor skill/writing issues, and social quirks are the wrinkles to be ironed out over the next year before kindergarten.  Compared to last year's list I'd say that's a fairy tale of a parent/teacher conference.

The End.

Sunday, November 6, 2011

Grateful and obsessing as usual

There is a trend on facebook right now where people post things they are thankful for every day.  I have to say that it's been neat to see people really striving toward gratefulness every day- even if it is only on facebook.  While I have yet to take part in this trend, I would like to mention a few things that I'm thankful for here.  Today Isaac went down for the children's message at church without me accompanying him for the first time, and he sat and did fine.  The service itself was unusually long as today is All Saints Day, and I found myself growing antsy after the hour had come and gone without the service ending.  Isaac did as well as any four year old could in that situation, and I'm grateful for the people sitting near us that took his fidgeting in stride.  I'm thankful that last year's anxiousness about him starting Sunday school and leaving the church nursery has proven unnecessary so far.  He's really growing up.

There is a situation, however, that has Andrew and I scratching our heads lately.  Every time Isaac is approached by someone unfamiliar he becomes silly, won't make eye contact, and talks in a high cartoonish voice- refusing to answer any questions or to say anything that makes any sense at all.  No amount of coaxing or guiding gets him to act as expected in these situations.  I even gave him the option of looking at the highest point on a friend at church's shirt today instead of at his face, but I think by that point he was already overstimulated and ready to go home.  In fact, I know he was.  He even turned down going to Five Guys Burgers and Fries after church- saying that he just wanted to go home.  Still, this situation occurs a lot.  Last weekend we ran into one of Isaac's parapros at Target.  She was with her kids and introduced them.  Isaac immediately stopped behaving and started running around the racks- refusing to say hi or answer questions for a woman he sees 5 days a week.  I'm going to go ahead and just say that I know that this is pay back for my childhood.  If I were Isaac in that situation I probably would have said some smart ass remark that would have been far worse than any hyper activity he displayed that day.  I'm pretty sure I would have said something like, "You look too old to have kids that young.  Are you sure you aren't their grandma?"  Because that's the kind of kid I was.

As comforting as it is that remarks like that don't typically cross Isaac's mind, the obvious lack of social skills here has been the topic of discussion more than once in the past week.  The only thing I can think of is sitting down and writing a social story for him- it worked for teaching him to answer how old he is when asked.  I wonder what the chances of getting Andrew to draw the pictures this time are...

In other news, I found this book today,

 and am thinking of purchasing a copy for our family doctor as a reference book.  I honestly think she'd be interested.  I would also like to buy a copy for everyone that rolls their eyes at me about Isaac's diet.  I'm sending snotty mental waves to all of you- you know who you are.  It looks to be the most comprehensive and highly rated book about the topic of dietary interventions.  I know that a change of diet does not help everyone on the spectrum, but it did help Isaac.  Anyway, if you're interested in learning more about the food land we live in, or even just eliminating un-helpful foods, this looks like a good place to start.  In the meantime, I hope you aren't getting sick of my usual cocktail of obsession and gloating as you'll most likely be seeing another post after tomorrow's parent/teacher conference.  Hooray!

Tuesday, November 1, 2011

A year later

It's been a year since Isaac was officially diagnosed as being on the spectrum.  Looking back, I'm glad that days like these are no longer the norm.  There is always a lot to work on when you have a kid with special needs, though.  And when you think about that to-do list as a whole it can be a bit overwhelming- as in, holy crap how am I not getting a salary for this job- overwhelming.  IEPs and parent/teacher conferences bring that list to the forefront of your mind and you are either energized or feel really, really deflated- depending on the day.  There is a temptation toward perfection, which seems really silly when you're dealing with special needs kids, especially young ones.  But as a parent you want to do everything right, right now.  You want to be consistent 100% of the time.  You don't want to let one teachable moment squeak by, and you end up driving yourself crazy.  You think that every one else's kids are perfect and that you're the only one dealing with what you're dealing with.  You feel isolated.  Or maybe that's just me on a bad day.

On a good day, I remember that I need to pick my battles and let Isaac be four.  And on good days I remember that I don't need to "fix" everything all at once, but that if I just take one day at a time and work on our to-do list we will still make progress.  What that's looked like for the past couple of weeks is that we pick ONE thing to intentionally work on each day.  Some days that means that daddy takes 10-15 minutes to do scissor work with Isaac.  That went smoothly once I reminded him that our son is right handed, not left handed.  Some days it might mean that we get on and work on phonics stuff- or pop in a video on sight words.  Today it meant getting out a sticker workbook to practice our crayon and pencil grasp and coloring inside the lines.  My eye is still twitching.   You know you have a kid with motor skill issues when you would rather work on math than coloring.  Half way through I was reminding myself that there is a breakfast stout with my name on it Thursday night when I go out with a friend of mine.  By the end of it I was the one who needed some time in the bean box for some sensory therapy.  So we did that.  Tomorrow I think I'm going to take a field trip to Office Max to find some pencil grips, because I really don't think I can make it to Christmas coloring with Isaac without them.

One day at a time, one skill at a time is how we've come so far in a year.  I have to remind myself of that and be grateful.  Here's to another year of working on life with my love.