Just another WordPress.com site

A Day In The Life

Every morning I wake up and I pray.  I say thanks for my blessings and I wish for a good day.  If there’s enough time to, I shower, and in there; I cry.  The mornings and evenings are when I tend to have these bursts of emotions though honestly they can happen anytime in between as well.  But they tend to build up after a night of sleeping or a day of activity.  My regrets and fears all combine for one explosive roller coaster of emotions.  Still, I am not crazy.

I wonder if I will go crazy the longer I turn around and around on this ride.  I knew it would have its ups and downs, and it would be a lot of hard work.  But wasn’t some of it supposed to be fun?  Were children meant to carry the burden of so much work?

In my heart I know the answers and that is why it remains heavy.  I saw it happen, twice.  I felt it happen in my own body.  And now I have to experience every single day the regret of not being able to go back.  The only thing that makes me feel ok sometimes is to advocate against the evil that worked so hard against me.  

There is so much corruption in our world.  I was set up for failure, as well as my babies.  I have to recognize that hurt for what it is, and release it.  Constantly.  I do that all the time.  It is exhausting.

There are things I cannot change, but many are within my control now.  Like what we expose ourselves to at home, and what we eat.   Once I took that control I saw and felt the changes that I wanted to see for everyone I loved.  Because I care.  It’s not about being right.  It’s about obsessing over health, nutrition, and immune function for several years; and having the people you care for the most discredit you and your research.

Going through the motions is easy.  I am grateful to be able to do so.  It’s the moments in between.  When I get a minute to stop and think.  Sometimes it’s a song on the radio. And I can’t help but become overcome with feelings of guilt.  I think I do bottle it up too much.  But what else to do with so much feeling?

It has changed the way I think about everything and the way I live my life.  While trying to maintain a balance where I feel as empowered and free as anything else, I struggle. 

 

Dietary Intervention

One of the most frustrating situations I have been through as an Autism parent was the lack of action pediatricians took to treat my oldest son.  He was severely constipated, at the worst point having only a few bowel movements in one month.  I asked for food allergy testing and was denied.  Later, a chiropractor ordered the tests and they revealed what we had witnessed; our son was sensitive and ‘allergic’ to so many foods.

I use the ” because in my opinion sensitivities are less severe or the beginning of a more serious allergy.  Each causes inflammation and a host of other possible symptoms.  Although I am forever grateful neither child has anaphylactic reactions to anything; there is still a need to keep up with our special diet or everything falls apart.

Unfortunately for our society most doctors are conditioned to practice medicine and not good health.   If doctors  became experts in nutrition and recommended dietary changes they may prescribe less medicine and have less follow ups.

The side effects of medication are often masked by another medication and this is how we end up with a country

How Autism Saved My Marriage

We were too young.  To have babies let alone get married.  But when I found out I was expecting our first I knew what the right thing to do was.  Even though we weren’t yet married.  We survived, and here we are almost three years into our marriage.  With two beautiful boys.

It wasn’t easy.  We had a lot of growing up to do.  We were both too stubborn and unwilling to compromise.  We both resented one another for past mistakes.  We fought often.

Then something happened.  Our oldest son got diagnosed with Autism.  It was still hard, even harder.  The financial strain of therapies and private pre-school was enormous.  We separated a few times when the stress was too much for us to be together without fighting every day.  No matter how bad it got it was never as bad as what I grew up with.  That was always my goal.

In those periods of separation I would pray he would come back to me more mature, more wise.  That he and I could both let go of the past and build on our future.  I would expect apologies.

Over a period of time I began to grow up myself.  I saw less faults in my husband and more of my own the more time I got to myself.  I began to forgive us both.  I became more mature, more wise.

We were kids having babies.  We had to deal deaths and betrayals of fathers and other loved ones constantly through out our relationship.  We became each other’s safe place.  We trust each other because we had to at some points.  And I’m glad God gave me you because he knew you were trust worthy enough before I did.  I felt faith in our love all along.

We have cried together many times.  Melting down in each other’s arms after a day of Autism hell.  We have suffered losses.  We have seen each other at our absolute worst.  When you are tested like that your bond either breaks or strengthens.

We hit rock bottom.  More than once.  But I don’t think we ever will again.  I can say with confidence we are both on the same page.  My marriage is stronger because of all we have been through.  Autism included.

The strict routines, the extra needs, the extra work, therapies, special diets, and the problems with behaviors might be enough to make some people run away when they wouldn’t otherwise.  I don’t think the divorce rate for Autism parents is quite as high as they say it is though.  Perhaps it exacerbates issues that are already occurring as it puts financial, emotional, sometimes physical, and often social strains on families.

For some of us it helps bring to light what is really important.  When you have to work extra hard to help your child learn things such as speaking, you just don’t have the energy for the irrelevant things. When you are exhausted and your spouse reaches out and helps, you build up respect and you appreciate all that they DO do.  And you let go of what they don’t.  Because the two just don’t compare.

Our little canaries have taught us more than we have them!  How blessed are we?!

Aging Out Of Therapy

As the time draws near for my youngest to age out of the therapies he has been in since he was 10 months old I am beginning to wonder; who is this going to be harder on?  Me, or him?

I say this with guilt because I know that mine is as ideal as it gets in this situation and a lot of Autism parents don’t have the same blessings bestowed.  But for the same reasons I feel so blessed I feel the need to share my experience, and to share what these women have done for me and my sons.

I was fortunate enough to have the same Developmental Interventionist, Speech and Occupational Therapists to initiate therapies with both of my sons.  As well as the same psychologist to evaluate and diagnosis them both. Reaching out to each other when they felt needed to work together on my sons’ early interventions.  My oldest was only in the therapies with them for 3 short months, but my other son has been enrolled for two years now.  And he isn’t three yet.  Saying goodbye to these therapies is saying goodbye to what he’s been so used to for most of his life.  Saying goodbye to them makes me feel lost.  How can I expect him to feel any different?

You see I think I have a good grasp.  I feel I’m finally there.  I understand how to ‘work’ with my kids and how to use floortime and any play time as opportunities to teach and learn from each other.  Every time I think I know it all one of them comes in and gives me tips just by doing what they do.  And all of this for FREE.

When I start to feel desperate I have to try to replace that feeling with gratitude.  How many people don’t know about the opportunities we had or don’t find out about them until they are too late.

I wish I had known earlier with my first son that in every state in the U.S. there are government run programs which provide diagnostic evaluations and therapies for children until the age of 3.  In a perfect world it would be top priority to extend this until at least the age of 5 or 6 when children can go to school and receive some therapies there.

But back to being positive….

As much as I am going to miss these women I think we will all be more than satisfied with all the time they spent working with my children.

Lukah has improved significantly thanks to how quickly they took action in the three short months they had.  And Jaeden, well, I’m sure that none of us will ever forget the difference in him from the beginning to the end of his therapies with them.  Talk about night and day.  He wouldn’t sit for any activity, he would melt down if they spoke any louder than a very soft tone, almost a whisper, and didn’t look right at him.  Now, he runs to the door greeting them with a hello and a hug.  Now, I’m not concerned about how either of my boys are going to ‘turn out’.  I’m concerned with if I can keep up the pace.

And I’m just plain sad.  You lose a lot of your social life when you become an Autism parent.  When you get used to seeing the same people on a regular basis, and they are willing to come into your home to work with your son through the good and bad…you appreciate them on a level that isn’t easily explained or expressed.

To them, they’re just doing their jobs.  To us, they are working miracles.  Breaking through to a side of my sons that isn’t always easy to get to.  And showing me how to do it, too.

I know there’s going to be a time when the UPS guy knocks at the door and my sons run to it calling one of their therapist’s names and it’s going to make my heart sink.  I also know that it will easily be lifted back up when I think about how lucky I am to be pining over the ‘loss’ of these great women.  I will always have them to tell about my son’s successes with just a phone call or e-mail.  They will probably always be some of the first to know, and deservingly so, because they helped create them.

When you have children you don’t say, “I hope he has your eyes, my hair, and your brother’s Aspergers!”.

When they are diagnosed with Autism you don’t say, “Hooray! That’s just what I was hoping for!”

Both of my sons went through extensive evaluations.  Multiple people weighed in on several hours of different types of diagnostic assessments and individual interpretations.  I was present at all of it.  We didn’t throw a party after it was all said and done.  There was no, “Congratulations, your son has Autism!” or, “Lucky you! Another Autistic son, you have been so blessed!”

It wasn’t the total opposite.  I felt a lot of hope and looked towards the future (most of the time) being optimistic.  Yet something had changed.  It became apparent that the melt downs weren’t terrible twos and for a few years we could rarely enjoy going out anywhere.  Absolutely no restaurants, no public parties/school get togethers for longer than 20 minutes and no family trips to friends/family houses that lasted longer than an hour or two.

“Every kid acts like that sometimes.”

Yes, they do.  But not every kid acts like this ALL the time.

Then you feel more comfortable as an Autism parent and dive into the Autism world.  You find adults on the spectrum and you are intrigued by their insight.  And then called names for wanting your children to be rid of their diagnoses.

All I want is for them to be as high functioning as you.  For them to be able to reach out to someone and tell them how they feel.  That is all I hope for at this point!

During all of this you’ll run into a parent or two that will say they choose not to ‘treat’ their Autistic child, even ‘naturally’.  Yet they believe in speech and occupational therapies.

And adult autist or not if you don’t have a child or more with the anxiety, communication, and sensory issues that mine have resulting from their Autism then please don’t put me down.

Unless you have a child who only has a bowel movement 2-3 times a month or constant runny stools 10-20 times a day, don’t talk to me about how gfcf diets do not work.

Nothing works for everyone.  Not everyone falls on the same place on the spectrum.  Maybe we all fall on some part of it and none of us can really be ‘undiagnosed’.

But when my kids’ Autism is nearly unrecognizable by myself and others you better believe that is going to make me happy.  And I am never going to apologize for that.

Overcoming obstacles is an inevitable part of being human.  Autism is an obstacle for some of us.  Overcoming it or constantly thriving with it, should be celebrated.

You were born and I came to life in a new way, too.  You gave me purpose and meaning.  I had a reason to be better.  Your father and I doted over our new baby for the next two years.

It wasn’t always easy.  New babies never are.  The hardest times occurred after your vaccinations.  We couldn’t help but notice you cried, a lot.  And with each shot your personality changed a little more, too.

We brought up some concerns we had about your development to your doctor.  She referred us to someone who came out to our home to speak to us.

After a few more ladies came out to play with you your strengths became more apparent, as did your weaknesses. 

You were diagnosed with Autism. (which you already know all about) We learned about it and all the people who have been thought or known to have it.  We knew you would be fine.  We just had some work to do!

And you were fine.  Soon, you began to eat a lot more.  You slept better once mommy made you a weighted blanket and overall your days were better once we learned about SPD. 

When you started to walk, you ran.  When you started to use a crayon, you wrote words.  When you started to talk, you spoke the most intelligent and humorous sentences I had ever heard.

I hope that when you really learn about all of this.  And you really learn about Autism.  You see what your parents saw.  You see that it is one big broad diagnosis they are trying to fit so much into.  You’ll see you are not Autism and Autism is not you.

You’ll know one day why it was extra hard for you to find your words.  You’ll know what made you lose them, and who helped you find them.  You’ll be so proud of yourself when you really can see how far you’ve come.

And that day might not be until you’re a daddy yourself.  Which I have no doubt you will be.  Your wit, your brain, and your heart will have no trouble finding love. 

So when you feel different, know that you are in the best way.  Be proud of your differences and live by the golden rule and admire others for theirs.

Just about every day when I log into Facebook I come across another study that ‘proves’ another ‘possible’ cause of Autism.

Mothers who are obese or have diabetes/hypertension…

http://pediatrics.aappublications.org/content/early/2012/04/04/peds.2011-2583.abstract

Parental Age….

http://www.annalsofepidemiology.org/article/S1047-2797%2812%2900005-1/abstract

Anti-depressant use during pregnancy…

http://archpsyc.jamanetwork.com/article.aspx?articleid=1107329

Pesticides

http://articles.latimes.com/2007/jul/30/local/me-autism30

Lead Poisoning….

http://www.jrnlappliedresearch.com/articles/Vol5Iss1/lidsky.pdf

Mercury Poisoning…  Yes. I said Mercury.

http://www.ncbi.nlm.nih.gov/pubmed/11339848

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773803/?tool=pubmed (this is nutritional, too)

Diet

http://www.clinicalepigeneticsjournal.com/content/4/1/6

Environmental…(which not surprisingly includes brain swelling from vaccination!)

http://scholar.google.com/scholar_url?hl=en&q=http://www.intentionalgrace.co.nz/uploads/89969/files/Autism_article_by_Helen_Ratajczak.pdf&sa=X&scisig=AAGBfm02jGCxpY8XCiCEB9Y0PAerLFDiFQ&oi=scholarr

I have seen ‘studies’ ‘linking’ ‘Autism’ to just about everything….PCBs, antibacterials, other drugs/depression during pregnancy, hormone imbalance, hormone disrupting chemicals, family history of Pink’s disease (aka mercury poisoning).

Yet, you still hear experts every day saying that the epidemic we are facing is nothing more than greater awareness.  While their colleagues are looking closely at things that ‘correlate with the rise’.

Of course there are chromosomal abnormalities.  Autism can be genetic.  This is very rare in comparison to the number of children on the spectrum.  I can’t help but think some of the people researching or pushing for the research have loved ones who are affected and they are honestly seeking out some truth.  But for the most part it feels like a kick in face.

My husband and I had our sons in our early twenties with no diagnosed history of Autism in either family. Our healthy, typical, babbling babies were taken from us one at a time from vaccinations.  Maybe all of these other factors didn’t help.  But the shots pulled the trigger of the loaded gun.

If it happens once, shame on you.  Twice, shame on me.  I let it happen TWO times.  The second time he reacted so quickly I knew without a doubt that this was vaccine induced Autism I had just consented to.

Autism is such a broad diagnosis that the causes of it may be a spectrum.  It may be a warning to all of us of the things we all need to avoid.

If one of your children hasn’t become a statistic there is a rising chance with each year theirs will be.

Taking control of our health was the only thing that saved my family.  At the beginning I felt so overwhelmed I never thought I could ever reach the point I have now where I truly consider my son’s vaccine induced Autism a blessing.

They have their words back, their eye contact. and their overall ability to interact and adapt to changes in their environment is built upon every day.

My sons both have developmental delays.  But there would be many instances you would be blown away by what they can do.  My sons are both on the Autism spectrum.  But that has never been able to define them.

It’s quite possible for the rest of my life we will continue to see a rise in Autism and the ‘experts’ will continue to draw their hypotheses.  Connecting Autism to almost every substance or medical ailment on the planet, even some of the ingredients in vaccines.  Yet never connecting them to the vaccines.  All while I and many more parents silently heal our children knowing what damage was done and how to prevent it from happening anymore.

It’s illogical to keep trying to figure out a link.  Whether you believe what we have known for decades or not, could you at least take a look at what WE are doing-?

Could you please do some studies on the possible causes that can help recover/reverse Autism symptoms.

That’s what our money should be spent on.  Since obviously the experts will never admit what they already know.  Why don’t we just settle it is ‘environmental’ and study how to HELP. Before nearly all of our sons and many of our daughters are Autistic and need thousands of hours of therapy to function.

Those Autism rates…they’re not on the rise.  Or are they?

http://news.health.com/2011/05/23/cdc-autism-adhd-rates/

Tag Cloud

Follow

Get every new post delivered to your Inbox.