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

I certainly haven’t been a consistent blogger.  I blog often when I need some sort of therapy, so I guess if you’re expecting sunshine, I should provide some sort of disclaimer.       That was it.

My headaches are back, I’ve been seeing a chiropractor at my midwife’s suggestion.  I really like her – she reminds me of a friend in Edmonton.  She was honest enough to to tell me that if the headaches were structural I’d see some improvement almost immediately, and if it wasn’t then seeing her wasn’t going to do anything except drain my bank account.  I liked that she was honest.  So far, while I can now shoulder-check again, my head still hurts.

It might be time to see a neurologist again, or a least put the wheels in motion since I imagine I’ll be behind those who need to see one for more pressing matters than persistent chronic headache of unknown reason.  Truthfully though, I imagine that a Neuro is going to look at me, see my normal MRI, and prescribe a drug we haven’t tried yet.  I know why my head hurts, I think it’s stress related.  I tell myself often that there really isn’t much new stress that should be causing this, but the new stress creeps in when I’m not paying attention, and suddenly with reflection I realize how much I have been worrying.  I don’t need a neurological exam, I need a vacation.

I tend to be a bit pessimistic, I think it’s a defense mechanism.  If I can imagine the worst outcome then I’ll be relieved it didn’t happen.  Except it does nothing, but to raise my cortisol levels, give me a headache, and leaves me exhausted.

We had reached a plateau with Elijah and I think we were starting to slide downhill a bit again.  Kyle saw it less than I did, but I think Elijah may be developing a sensitivity to soy and rice.  Great – a further restricted diet.  I started to do some research and joined the biomedical support group here at Autism Services.  Everyone had great stories, and they all had something different work for them.  Great – more info to wade through.  After thinking about trying a much more restricted diet to heal Elijah’s gut (If you’re wondering why I’m talking digestion instead of brain,  I have a post I’ve been working on, on what I think are the core problems that cause E’s Autism.  It’s emotional and I keep having to edit for simplicity, it’s in progress, so check back to understand later) the thought was overwhelming: we’ve just gotten to a point where Gluten-free Casein-Free is easy.  Kyle was hard to convince, as usual I do the research, try and understand how it works, and Kyle shoots it down asking scientific questions past my realm of understanding.  Making me feel lofty and unintelligent.  Whenever I think about changing our treatment of Autism, I have not only to figure out if it could be something that might work for us based on E’s symptoms, but I must also get through Kyle’s wall of demanding peer-reviewed, double-blind papers published supporting such a thought.  Finally, after much talking, and much crying on my part, to try something new, we’ve implemented fish oil (omega 3’s and 6’s) daily as well as general vitamin support, enzyme therapy, and a pharmaceutical probiotic.  Deciding to keep the SCD diet in out back pocket if we saw no change. We’ve had some amazing success: better eye contact, more willingness to be touched and cuddled, a pop up in language skills, and better concentration.  All also noticed by Elijah’s therapists and teachers.  Yay!

But wouldn’t you know it, it has also come with a regression.  Yes – he’s better and worse.  Sigh.  He’s angrier and has gone back to biting and screaming.  Not just yelling, an ear piercing scream that hits the decibel and pitch level where your ears start to crackle then ring.  Over and over and over again he’ll scream.  It hurts the ears, and usually Petra and Natalia will start to cry when he does it.  We had actually been though this once, outgrew it, and now we’re back.  My head hurts when when I wake often , really my patience for such a practice is low and it makes me want to cry too.  It makes me not want to wrap him in my arms, but to stuff him in a box and close the lid.  Sometimes wrapping him in my arms does help, but it looks nothing like the comfort a parent offers a hurt child at all.  He does not cuddle in and sink in to my love slowly softening his cries.  He thrashes, kicks, bites, and I have to squeeze harder and harder until the deep pressure I’m providing offers enough stimulus to calm his raging nervous system, which often means me sitting on him or physically restraining him.  This used to be more possible, but being quite pregnant these days I’m often kicked, punched or headbutted in the stomach, and I can no longer risk such injury.  It’s not a matter of him actually trying to hurt me, but of exhausting his rage.  So lately the deep pressure confinement isn’t as possible as just letting him scream himself out and that can take awhie.  It comes at the drop of a hat – happy one minute, outrageously frustrated the next minute his Lego tower falls over, or his sisters do something to drive him crazy.  I don’t think I can truthfully write the experience of his screaming out.  I could videotape it, but I don’t want to become the type of parent who tapes her kid to prove  how horrible he is.  Writing about it is hard enough.  I hope that maybe the above mentioned interventions are helping an that means that it’s Candida yeast die off causing him to feel miserable and therefor it will be passing and worth all of this.  I really hope, I want to believe even.

I haven’t really meet any new friends here yet.  We’ve gone to a new moms playgroup, but it was all parents of babies, so my big kids didn’t really fit in.  We thren found a homeschooling group that was looking to have some meet ups to get our kids together,  they all had kids from babies to about 6.  Perfect.  Friday we had plans to visit an educational play area for kids during the day.  Kyle was going to be at work, so it was going to be just me and the kids.  In the end we picked up another mom from a nearby town and headed in.  The night before I prayed fiercely that Elijah would be calm and good.  When he’s good, he’s good, and it’s no problem at all.  We got there and he played so well with the other kids he was laughing and having a great time.  Until he wasn’t.  Someone took a toy from him, he tried to get it back, he was pushed, he pushed back, and then he bit the other kid.  I was horrified.  He was scolded and that’s when the screaming and trashing started.  So we had to leave, but it wasn’t an easy thing.  We still had to get coats on Elijah, Petra, and Natalia, and force the family we drove to leave with us.  Elijah ran away several times into the mall where the kids museum was, so I had to hold on to him while he struggled, and try to dress the other kids all while he screamed that painful scream causing everyone nearby to stare and some to stop and watch.  I shouldn’t care, but it was humiliating.  In the end I had to sit on him in the parking lot because he was screaming and kicking, as I tried to get him in his carseat.  This caused a car to stop and a woman to get out and ask if we needed help.  Umm… no, my kid is just having an autistic fit.  I apologized to the bitten kid’s mom, she was super about it, but I just don’t know if we can go back.  No matter what, parents are going to wonder if we just let him get away with everything after a display of screaming when disciplined like that, and they likely aren’t going to trust their kids around him.  I feel like we can’t have the opportunity to make new friends, because who knows if a good day is about to go sour at any minute.  I can’t abandon two little girls when their brother needs my full attention, so it seems that we may not be able to go out anymore unless Kyle is with us.

Honestly I wish I were back in Edmonton or Chicago where people got to know us when Elijah was little and his quirks were easier to forgive.  Back in a place where we already had friends and some support.  Where people loved us.

As you can imagine this lack of social skills has left us with no one we can leave Elijah with when we go into labour.  We are signed on with the publicly funded midwives, and they do home and hospital births.  Except they won’t do homebirths outside the city limits even though we fall under the same healthcare jurisdiction.  We would just hire a private midwife, but when Saskatoon needed midwives to run the publicly funded option the 3 midwives in the area signed on.  So there are no privately licensed midwives in Saskatoon or area currently.  So our options are to leave our kids with a stranger by hiring someone from a service or bring them with us to the hospital.  Even before Elijah’s recent fits, he’s tough to keep still in a chair waiting.  Especially when there are so many cool buttons and gadgets to play with in a hospital room.  I fully expect that he will be asked to leave which would mean I get to labour in a hospital all by myself.  Not exactly the scene I had hoped for.   My midwives seem to understand, and are willing to make an exception, but I have to have approval from the program director and the health region chairwoman.  As of yet I don’t know if my letter begging them to make an exception for us has been approved.  More and more I wonder if I truly have stepped off the deep end.  I wonder if adding another baby is going to be a huge mistake, something not wonderful, but damaging to all of us.  I’m not managing well with the three I have, in fact I feel as though I’m failing miserably, how in the world will we get through with four. One should never doubt God’s grace, but I doubt my capacity to contain it these days.

These are the big things I guess.  On top of it all are the small everyday stresses that every parent must face, the fact that our boiler must be replaced because it is unrepairable because parts are no longer available – a 30,ooo dollar expense, that will gobble up every cent we currently have in the bank, debating about flu vaccination and H1n1, a topic I’m ready to be free of, and trying to decide about school next year.  Where I’m sure I will be again forced to weigh my decision to homeschool, and then defend it.  A decision I’m already wavering over, knowing full well what is best, and wondering if I can manage one more thing

Just lately I feel like everything is a struggle that I must fight for everything, from getting my kids dressed, how I choose to medically treat our kids, to how I am allowed to birth our baby.   Don’t get me wrong, I will continue to fight, my children deserve it, but lately I’m just a little bit tired, my house is cold, and I’d really like to have a friend to sip tea with, who understands Elijah isn’t bad – he just has a harder time adapting to change, while our kids play at our house where Elijah thrives because he knows the rules here.

I have more thoughts, more ponderings, over what exactly a person is supposed to be able to take in a lifetime, about what Godly purpose such low spots serve, why some can bear great weight and others crumble.  Thoughts on whether the worst in life is truly the worst, or weather that which slowly erodes us is.  Is it meant to shape us or break us.  Thoughts about why some families find their recovery, and others like ours so far, must work constantly wondering if we’re on the right track, or doing all the wrong things, while the good true answer, lays waiting perhaps never to be tried or found.  Wonderings on whether a recovery is even possible for everyone, or a hope to be chased.  I wish, like most of  you likely do at one time or another, for a glimpse in to the future.  I just want to know if Elijah’s future is better or worse.  Will it be like this forever?

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Comments on: "Does the provincial health plan cover Travel Agents?" (7)

  1. goingtobeadaddy said:

    I wish I could offer you advice but I rarely have the right words and I definitely don’t know the future. All I know from what I have read and what I have heard is that you are doing anything but failing so I think you can push that concern out of your heart. Be strong, hold those you love dear and I assure you the rest will take care of itself.

  2. friend,
    I am here for you for all of these things…I can take care of Elijah while you’re in labour…I can be there in a jiff (or as quickly as my car allows). We’ll work it out somehow while we chat on the weekend over tea…
    love you!

  3. Oh Erron! All your thoughts and feelings…I’ve been there. I AM there. It’s so hard and most people just cannot understand no matter how hard they try. I have no idea what services are like in Canada but do they offer respite care at all? Or personal care attendants? These are people who could go with you to appts and playdates as well as help in the home.

    If only birth were more predictable I’d fly myself out to Canada and watch your little ones for you. Let’s not eliminate that idea all together. I remember feeling panicked about who to trust Brady with while I was gone.

    Angela

  4. Erron,I’m starying at this repy box, and I know I don’t really have anything to say. But I want to make sure I reply so you know that I heard your words, and that your in my thoughts, and I wish I could do something more than that.
    You and Kyle are doing a great job. You have already made tremendous changes in your lives to try and give your children a better life. And I think they’ve already got a better life. You’re amazing.

  5. While we have not met, from what I have read you are strong and loving mother. I don’t think you are failing. You love your children. You do the best that you can. On some level, they all know that. They feel that love. That will fortify them. And over time, you will feel it coming back.

  6. Hey Erron,

    I am having a quiet night at home, and having a chance to read up on my friends. I just wanted to say that you need to keep getting out and meeting people. The ones that don’t understand your family and not the ones you want to be friends with. And every parent has the moments when their kids make them feel embarrassed. That is their job in life. James had plans to bring up crying fits Nathan had as a baby when he is asking to borrow the car later in life.
    Anyways, we are excited to see you guys next weekend. Baby bump and all.
    J

  7. Hi there Erron,

    Well, I friended you on Facebook for that silly Farmville game, but then I saw your profile and was led here. I have read your struggles and joys with fascination and admiration. I just wanted to say that I hope you find some more social outlets here in Saskatoon. I know how hard it can be to move. We moved here from Calgary 5 years ago and only a couple of years ago did I feel like I had a real friend. Not sure how you know Lorena, but I know her through homeschooling, and there are several circles within that, and then there’s also the Attachment Parenting group, which I’m sure you are a part of. I was part of the Newcomer’s Club when I first got here, and that was very helpful because those people did not have established social circles, so were very open. Good luck to you.

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