living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Archive for November, 2010

Run Away

I wish there was money in savings to head on a vacation.  Nothing extraordinary, a few days in Disney World would be just about right.  Really, I  just want to get away.  Two years ago when we went, there was some whining spells and such, but really, it was a nice break from life.  Break from life!  That’s what I’m really after.  Everyone was happy, and we woke up each day with the excitement of knowing that, that day, was going to hold something new.  The shiny kind of new, a new/exciting/marvelous “something”.   Sometimes just getting away form your surroundings is enough of a refreshment to keep you plowing through life.

A vacation is plausible, a vacation is a realistic wish because what I would really like to travel far, far away from is reality.  Well, my reality anyway.  I want to go somewhere where babies don’t die, Grandmothers who are the epitome of love and who make the world a more beautiful place are ever aging and never leaving, where there is no Autism and the fear that it’s struck our family twice doesn’t exist.  Where I’m always doing and saying the things that will form my children into the kind of adults I wish I could be.

Two nights ago I couldn’t hold back tears any longer. It was 1:30am and all I could do was cry.  I got out of bed and drew a bath.  I can’t remember if the day was bad, or not, likely it was ordinary, meaning I was tired and the kids were needy.  I remember feeling for the millionth time that I am not the one to raise an Autistic son, that there is not enough in me to do it right.  Then somewhere in the night I remembered how my Babby used to hold my face cupped in her two hands, look up at me (she was a tiny person), and say:  “Erron you are a beautiful mother, you have patience, and your kids are so blessed to have a mother who is able to guide them with such love and patience”, and suddenly I was sadder because, surely now, from heaven she could see how untrue that was.  How when we are alone my patience is thin, how I fail when Elijah screams, or eats some bit of crap off the floor, or when he won’t stop running on the furniture, humming, or spinning. How I fail to be patient when Petra refuses to eat lunch and then 12 minutes later asks for a snack, and when the answer is no asks for a drink then.  How Natalia’s whinny baby bit makes me want to scream and how Micah…well I’ll get to Micah in a bit.

I will likely never get to take a break from Autism, but worst of all, neither will Elijah.  I want a recovery for him, so badly.  I want to believe that he can be normal.  Why can’t my kid be one of the ones who comes out of it? I want to try everything, and yet I’m afraid to.  What if we try everything and we can’t fix him? What if the age where one treatment would have worked is past us?  I have no idea what the future will bring, but I’m afraid it’s going to get harder, and we’ll just keep trying everything.

And there’s a terrible fear within me, that I may have to go through it all over again with this new baby.  The Lord may know the scale of my life better than I, but I don’t know if I can right the scale with another Autistic baby.  I spend most of my pregnancy aware of whether I’m nauseous enough, is the baby moving, always a flicker of fear, but always watching, wondering if  my baby is normal, hitting milestones, is just a way of prolonging my state of on the edge.

I feel like I haven’t taken a deep breath in years.

I think it has happened twice.  I don’t know.  For all of you who may have wondered if having another boy scares me.  It does, not just a little, it has me terrified.  I feel like it’s already begun.  He is a baby of extreme emotions very happy and very angry.  Most people see the very happy baby, because there are enough arms to always be holding him.  He needs to be held all the time, putting him down means he trashes about or cries, and yet, he pushes away and pinches when you are holding him.  He flexes all the time trowing his head back and arching his back as he screams.  He likes to bury is head into things.  He is all about vestibular movement.  He doesn’t sleep, good God, he doesn’t sleep.  He gets 9 or 10 hours at night often waking 4 or more times, never less than 3, and naps once or twice a day, sometimes only for 45mins, sometimes, on good days, longer 2-3 hours, but a good nap often means no second nap.  A baby his age should sleep 16 to 18 hours.

Everyday I worry.  Everyday I beg whoever is listening, God, the universe, whoever, not to burden me with 2 spectrum kids, but we all know it doesn’t work that way. We’re not all dealt a equal portion of hardship, so we could be the ones who have two.

Maybe I’m over analyzing, maybe I’m seeing things that aren’t there because I’m afraid.  Maybe I am.  I hope I am.  I hope it’s all craziness and fear.  I hope I look back, and think ‘I wish I had enjoyed his infancy more, instead of  investing so much fear into it’, because if I have to think ‘I wish I enjoyed his infancy more because I know things are gonna be this hard forever’ I don’t know how I’ll press forward without falling apart, without wanting to run away.

Anti-that-kind-of-parentite

Wanna do something controversial?  Have a baby.  Seriously.

I’ve read a few posts on other blogs recently on parenting styles, and then I spent some time talking with my friend Jodelene last night who is also a mama.  A mama going through a trauma, so she has different diversity parenting issues to deal with than me.  Also my friend Monica‘s blog posts have been rattling around in my brain (this one and this one.)

All of it has me reflecting on parenting.   Parenting styles, specifically, and tolerance.   You see I love Monica’s post, I don’t agree with it all, I personally think that we still need to fight for breastfeeding.  I think too much lips service is being paid to breastfeeding, doctors say breast is best while handing new moms a can of formula, just in case. Women are still being asked to cover up, or to take it to the bathroom, or are being discriminated against by articles like this one (hmm they did remove it).  On the other hand, I think she’s right, women who choose to bottle feed are also being discriminated against.  I know I have been quick to judge in the past.  If a woman has truly been presented with all the information to make an informed choice, I believe she has a right to chose, even if I don’t make the same one.

Everyone comes from different parent sets, and some of us feel the way our parents did it was right.  After all we all turned out okay, right?  And some of us want to steer in a completely new direction, opting to do it in a different way, then the way we were raised.

It seems to me that parenting style are increasingly being categorized with catchy titles.  Ferberizing, Baby Lead Weaning, Baby Wise-ing, family bed etc. etc.  Unlike in the past where we mostly just called it parenting, and you did it your way, and we did it ours.  Now we have books, websites, experts presenting at our mom groups on the merits of ‘their’ way, all putting styles, and the ‘rules on how to implement them, into neat little boxes.  And the problem, as I see it, with labeling, is that it leads to exclusion, other parent discrimination, and the us vs. them mentality.

Are you a monster if you let your baby cry it out?  Are you  creating an unhealthy attachment if you let your kids sleep with you?  Should you go to jail if you spank your kids? Are your kids going to be uneducated idiots if you homeschool, or allow them to chose their own educational path by unschooling? If a “typical hippy” mom with her baby at the hip, breastfeeding uncovered, while handing her older kid a raw vegetarian snack, starts talking about how fantastic the epidural was, should she have her sling revoked?

When Petra and Elijah were born I started a company that made slings and other baby products, so needless to say I was of the babywearing camp, however, I wanted nothing to do with an AP parenting group.  Why?  Because those Attachment Parenting moms and dads believed that you should wear your baby 24/7, and I couldn’t live up to that standard.  Imagine my surprise when I learned that was not the case at all, and that an AP group would have been a great fit for me.

You see, I’m pretty crunchy, I think.  I have strong views about how I feel is the right way to parent.  Sometimes it’s a rousing success, and sometimes it’s a complete flop.  Both these experiences help me to shape the way I parent the next day.  The way I raise my kid shouldn’t have to conform to a way, but I must admit I get hung up in it too.

The other day Micah was miserable.  I was tired.  He kept pinching me, pushing me away, but didn’t he want to be put down.  He wanted to nurse, and bite.  He needed sleep, but the arching of his back at the moment his eyes fluttered shut kept jerking him awake, and the screaming had me fearful we might have another ASD kid in the house.  I had him in the sling, the wrap, the mei tai, he wanted nothing to do with being worn.  I rocked him in the chair.  He was changed, and fed.  I tried nursing him, over and over, he clearly wasn’t interested.  I tried homeopathics, and then Tylenol in case of teething, or other unknown discomfort, and after several hours it seemed personal.  I’m rational, I know it wasn’t, but somewhere in the moment it felt like he was punishing me , that he was forcing himself awake of his own choosing. Didn’t he know I have other kids to care for too, a home schooling lesson ready, a puppy who just pooed in front of me, and lunch, an hour late, to make?

I wanted to hurt him, I really did want to.  Finally I set him in his crib, and went to call Kyle to sob and vent, while he wailed.  We don’t let our kids cry it out.  That day I left him to cry.  Some would have me believe that I risked brain damaging my child by allowing him to cry, maybe I did, but I should have put him down sooner.  I was seriously at the end of a rope, but I felt like I couldn’t put him down, because I would be abandoning my ideal, I had a box to conform to.  It was a box of my own design on some levels, and one imposed upon me on others.

The whole ordeal left me to wonder how many kids are perhaps brain damaged by a parent who snaps, because they are to involved in a parenting style to break the rules.  In the end I spoke with Kyle, admitted defeat reluctantly, and asked him to come home because I was a ‘crappy’ parent who couldn’t handle it.

My good friend Kim, who I felt was the shining example of how to execute perfect attachment parenting, surprised me one day.  She told me of a story the she had either read, or heard, in the news of a new mom who killed her infant baby by crushing it’s skull in a incident of frustration.  Expecting condemnation on the horror of it, instead she said something to the effect of: unless you have kids you can’t know how easy it is to feel that way.  As a new mom, at the time, I was so relieved that I wasn’t the only one.  So, we talked about how sad it was that she would have to mourn her baby, while many would likely feel she didn’t have the right to mourn because it was of her own doing.  I loved Kim a little more that day, and I love her a lot more today, she is one of my moms I look up to.

I don’t know where the parenting books are going to take us next, what the next ‘way’ will be.  I don’t see that things are going to get less separated, in fact I believe it will likely become more so. I wrote an article for The Shape of a Mother that asked moms to embrace each other as moms, instead of stacking themselves up against others to see who made it though pregnancy the least ‘badly’ that included this line:

No matter who we are on the outside, we all want the same thing for our children, room to grow, happiness, and love. How we provide that, is as diverse as our physical appearance.

So, I now say embrace each other as mothers regardless of how your body is changed, and love each other as mothers, and fathers, regardless of how you parent, as long as it is done respectfully, with love, without willful harm, and with the intention to form a well rounded, tolerant, beautiful grown person.  After all, parenting has always been diverse, it always will be, and learning about diversity is the best way to understand it, and to decide about the ways you would like to raise your children.

My parenting style is likely to continue to change, at least I hope it will, as I find the best way to get though to my kids and to feel good about the choice I’m making.  I also hope I can make myself more open to other parents even if I would never do it their way.

Fighting for Someone Else’s Kids

I like a good fight.  I don’t like having my feelings hurt, but I’m all for a good fight for the sake of my children.  A while back my Autism Support worker called to say she had recommended my name to be a part of a provincial forum on policy change.  YES! I was excited.  I want to be part of the group that makes it happen, that shines a light on our province’s Autism support policies.  Weeks go by, and I figure my name wasn’t picked, oh well, too bad, I guess maybe some other time.

Then on Friday, I get a call asking if I would like to attend the meeting on Monday night.  Yes, Monday of the next week three day away.  That same day, another phone call, they needed my address, so they can courier me a letter.  I don’t have an address, so I had Kyle email her his work address.  They were going to try and send it one day express, so that it would be there that day, or Monday.  It never came.  But I did get an email to say it had been couriered, and in case it didn’t come they sent it as an attachment.  Ummm… hello?!?  Seriously.  Why courier it then?  Please tell me that the government doesn’t feel that  it’s okay to spend 25 bucks to send me a letter they can send as an attachment, but feels it has the right to quibble over whether my compounded prescription can be covered?

Here is the letter: Focus Group for ASD and FASD

The meeting consisted of a group of  12 parents, some of us were alone and some were parent couples, voicing  concerns for 9 families.  It started with the facilitators giving us a questionnaire, where we had to write in our answers.  There were 5 or so with questions like: Describe your child’s limitations? What are the challenges you face providing daily care?  Describe what types of things we could add to the services offered to help with your child’s emotional, mental, physical, education and/or spiritual well being? All with about 2 inches of space under them for filling in answers.  It was explained that we would be given a bit of time to fill them out, and then when it seem like most people had stopped writing, we would start the meeting (it started at 6:30 and had an end time of 8:30) .  I think they were surprised to see people using the backs of their papers, and eventually told us to wrap up because we would run out of time.  Now why in the world would they not email that kind of thing to us ahead of time?  So we could compose clear answers. The kind without the use of arrows pointing to the rest of the answer scribbled on a separate spot on the paper, and so that the answers could be clearly constructed,well thought out, and made with input from both parents/caregivers.  Shame on them for not figuring that out, or was it a time wasting ploy? I hate being all conspiracy theorist, or contemplating alternative motives, I want to believe it was just an oversight, I’m just not sure.

The group discussion started with a question about the services we use and find helpful that are already covered by the health ministry.  That was summed up quite quickly.  Then on the deficits.  I have to tell you among parents there was no fighting, no one disagreed with anyone, and no one felt anyone brought up an illegitimate concern.  In fact people would raise their concern, and most people would bob their heads along, or shake their heads in disbelief.    It seems our government  is more keen to provide group housing and make work projects for less capable adults, than they are to providing the types of therapy that will help these kids, at a time when they are most able to benefit from therapy, therefore becoming more capable of socialization and standard education, thus making them future tax payers instead of future tax burdens.

If you want an example of ridiculous policy here is one from one mom.   A little boy makes use of a weighted vest to help with behavior modification, he goes to daycare, the government pays the daycare an allotted amount of funding to provide the little boy with a vest, specifically fitted and weighted to his needs.  When the daycare later says they are not capable of the type care the little boy needs,and they should find daycare elsewhere, the family can not transfer the vest to their new daycare because…wait for it… it belongs to the old one.  The family can not apply for new funding for a vest because they have used up the allotted funds available to their family in acquiring the old vest.  Now a child specific vest sits unused in a daycare center, and because people are weird about what’s theirs, the daycare won’t give it up, all because through current government rules the funds are sent to the daycare not the family, and so it’s the daycare’s vest to do with as they please.

After many well spoken arguments presented with feeling, emotion, passion, and drive to get what we need, we are told that the information gathered from our meeting, along with info gathered from parent groups, like the one we were in from Regina, LaRonge and one other place I’m not familiar with, nor can remember, will be combined and written up into a report.  Then sent to the ministry for review of policy.  Well in my opinion,  there goes our voices,  there goes our power.  I just don’t believe that my statement that we NEED!! funding for basic therapy, in order to get these kids to a place where they CAN behave and socialize in a more normal way, thus, giving them the best chance to feel like they belong in our society, is going to be bulleted to something like this.  – Parents feel there should be  funding for Occupational, Speech and Physical therapy, as well as funding for other therapies of their choosing.  We don’t get to know when our information is presented, or what kind of change will come of it until/if there is a policy change.  Hey! SASKATCHEWAN POLICY MAKERS!!  How about having parents directly involved in policy change?  How about instead of sending someone to report back to you with what parents are saying, you come hear it for yourself!!  Come on!  Please at least look me in the eye and say no.

I never want to go into a meeting with my dukes up, no one wants want to help someone who seems impossible.  I never want to go in to a meeting completely passive either.  From now on we go in with our arms down and our fists curled.    Our province won’t release prevalence data, they say there is no way to know when a child is diagnosed. Funny thing, ask any parent when their kid was diagnosed and they can tell you, I bet a majority can give you a date and what the aproximated time was too. It’s a life altering thing.  I know from Autism services what the Saskatoon birth rate is annually, and using the commonly held belief that 1 in 150 children fit on the spectrum somewhere a good guess on how many kids should be referred to Autism services can be extrapolated.  Sadly Autism Services is seeing nearly 5 times the “should be” number come through it’s doors.  Many parents believe that Saskatchewan Autism rates may be linked with the higher than national average rates of MS cases found in our province, but with out prevalence data there no way to correlate.  The Government is HAPPY to tell us that they are investing another 5 million dollars for ASD and FASD, but without prevalence data there is no way to know what that equates to, or how it disperses per child, let alone how Saskatchewan compares to other provinces.  To me it seems that prevalence data may be being withheld on purpose.  There goes my inner conspiracy theorist again.  It hardly seems grand to dish out and extra 5 mil, if everyone were to find out that it needs to blanket thousands more kids than one would think, or that something in our province is amiss and we are facing a diagnosis epidemic.

It feels like I’m fighting for someone’s kids.  The change is slow.  I wonder if Elijah will have time to benefit at all.   I said in the meeting, on some level it’s okay if it’s all for someone else because someone needs to start the push, but it feels unfair, and if we don’t start working on it now with the way Autism rates are rising, the province is going to have a much bigger fight in the future, so they ought to start setting it right, today.