How We’re Doing Things Differently the Second Time Around

One of my biggest fears after Matty was diagnosed with Autism was “What if we had another baby?  Would we have to go through this again?”.  Don’t get me wrong.  I love Matty for who he is, and that includes all things Autism.  But honestly, I would rather not have to trek down the Autism road a second time if I don’t have to.

Once Lily came along, I decided that I would do things a lot more cautiously.  I’ve learned so much about things like the body and immune system, nutritional aspects associated with Autism, the importance of limiting chemical exposure (and much more) from my first go-round.  Here’s what we are doing differently:

• Nursing–Matty didn’t tolerate it one bit.  He constantly threw-up, and we had to start giving him soy formula.  Lily was supplemented with formula for the first week and a half until things came through on my end, and has done exceptionally well with exclusive nursing since then.
• Vaccines–I haven’t gone into the whole Autism/vaccine debate, but in a nutshell, my theory is that vaccines aren’t completely to blame on their own, but they aren’t completely blameless either.  Matty had seizures after vaccines, which stopped when we stopped vaccinating him.  We PRAYED for months over our decision to vaccinate Lily, and worked very hard with our pediatrician to come up with a schedule that would protect her, yet still work with what we were comfortable with.  Lily is ten months old today and we are just now getting to her four month shots.  We have done two at a time, waited two months before doing the DTaP shot (which we ONLY do separately), then wait another two months before doing the others.  We’ve fallen a bit behind because we will only vaccinate when she is completely healthy…not coming off of illness, when she has a cold, etc.  I made that mistake with Matty, and I won’t do it again.
• Food–I’ve done A LOT of research about food and nutrition.  I gave Matty lots of rice cereal, sodium-filled baby foods jars, wheat products, bottles filled with BPA and other nasty chemicals (and heated them in the microwave…I know…)and other stuff that I have since learned are no-no’s.  Lily has had rice cereal once, and that is because I didn’t complete my research before giving it to her.  We started Matty on solids at four months because I figured feeding him “real” food would help him sleep through the night (even though at almost six years old “real” food doesn’t help much).  We held off until Lily turned six months, and started her with avocado.  I also am making her baby food (love my Baby Beaba!) and use everything organic my grocery store carries.  Unfortunately, there are some foods that aren’t available here organically, and I have to go with what is available.  I frequently view the “dirty dozen” list when choosing fruits and veggies for Lily.
• Chemicals–We have eliminated a lot of chemicals from our home.  I use vinegar for almost everything, even killing weeds in the flower beds.  We purchased an organic mattress for Lily and put organic barriers between her and chemical-ridden items as much as possible.
• Medications–I was one of those parents who did Tylenol for everything.  Once again, I’ve done a lot more research, and have only given Lily Tylenol twice (once she crossed the six-month threshold, we began with Motrin).  Antibiotics are another medication that Matty took continually throughout his first year, and we have successfully avoided them with Lily, treating her ear infection naturally (who knew that 87% of ear infections don’t need antibiotics–I didn’t!).

Will Lily have Autism?  I don’t know.  We are getting closer to the age where I noticed symptoms with Matty, and it’s scary.  But I do notice some differences between the two.  Lily hasn’t had near the medical issues Matty had (although she hasn’t been feeling well this past week).  She sleeps so much more than Matty did at her age.  She’s pointing to objects and brings me things that she is interested in.  She watches me talk to her and tries to imitate the sounds.  Are these indicators that she is “safe”?  Once again, I don’t know.  What I do know is that I am taking precautions that I feel are in her best interests to limit that will hopefully lead to a different outcome.  But if she does?  We will have a head start on the game.

Thank you for reading today.

Where We Are

Wow…it’s hard to believe that I haven’t touched this blog in over six months.  Well, maybe not, if I’m being completely honest.  The past few months have been a whirlwind of joys, pains and growth.  Let me catch you up to speed.

Matty gained a little sister six days before his fifth birthday.  Little Lily has been an incredible blessing to our family.  Matty tolerates her as much as any big brother tolerates a little sister.  Lily, however, ADORES her big brother.  It will be a great joy to see the two of them grow together.

We had an immensely rough summer with Matty, but it was also a summer filled with progress.  We struggled with lots of sleep issues (Lily has conquered sleeping through the night, whereas Matty has not).  And we had lots of poop issues.  Sorry, but there’s just not a nice way of saying it.  Turns out Matty was having terrible yeast overgrowth, and once that was resolved, so was the poop issue.  But great things also happened.  He started to talk, single words here and there (poop being one of them).  We also learned “tea” (thank you Lydia), “cook” for cookie and “beep” for chip (no idea how that came about, but he is consistent in calling them “beep”).  Matty has also learned to be more attentive and is doing some more sign language (thanks again, Lydia).  He is making animal sounds (pig, duck, snake, horse and owl).  He’s attempting to use the potty.  All wonderful things.  And he transitioned to kindergarten beautifully, which we were very fearful of since he spend three years at the same special education preschool. We are very proud of how well he is progressing.

So, you are up to speed.  Hopefully I will have a new post next week, one that I really think you will enjoy.

Take care friends.

 

Change…

Autism and change.

Two words that are super common in my household.

And as much as I use them, you would think they have some super connection.  They do.  The connection?  They don’t connect. (That makes sense in my nine month pregnant brain.  I hope it does to you.)

One thing that I have learned pretty quickly is that folks with Autism have a lot of difficulty with change.  Matty is no exception.  This past year, Matty’s resistance to change in anything (routine, shoes, placement of furniture…you get the idea) has been more pronounced.  It’s been one of the tougher obstacles to tackle, especially with the meltdowns that generally occur from said changes in public.

I’ll use the example of shoe shopping.  Matty is rough on shoes (see post from last year).  We go through about one pair every month or two because he is just rough.  So, for about the past five to six months, we had this awesome pair of shoes.  We tried different shoes, but going to the store and even attempting to put another shoe on his foot?  Not so fun.  I swear that people in Kohl’s thought we were torturing the poor child.  Nope, just trying to put a different pair of shoes on his feet.  It didn’t go over so well.  So, we were very blessed to buy the same pair of shoes three times around.  Yeah, we even did the four state tour to get the shoes.  That is how resistant to change Matty is.  Well, this past go round for shoes, we weren’t so fortunate.  We found out that (a) Matty had grown a size and no longer would fit in those shoes and (b) said shoes were discontinued anyway.  So, I had no choice but to purchase a different type.  I let Matty open a few boxes of shoes in his size, and each time, the shoe was placed back in the box (actually, I’m being nice.  He threw them back in the box).  I even had the audacity to try and put the different shoes on his feet–much to both of our dismay.  Matty curled up his feet and kicked and started screaming, and I felt like doing the same.  I finally picked a pair, paid for them, went out of the store and decided to try at home.  It didn’t go much better.  Physically holding down your child to put on shoes while he is screaming like you’re shoving splinters under his fingernails?  Not my idea of a fun day.  We spent about an hour kicking the shoes off, both of us melting down because of CHANGE.  But we kept on going, and by the next day, the shoes stayed on the feet for the majority of the day.

So, what is my point today?  Well, the whole point of this blog is about raising awareness.  I can’t count the dirty looks I’ve gotten from people because my almost five year old is melting down because things have CHANGED.  I know there are plenty of other Autism moms out there who would flat out agree with me on this one.  And I’m pretty sure that we all want the same thing–understanding.  Don’t just assume that we are mothers, fathers and caregivers who don’t have control over our kids.  We aren’t.  We are doing what may come easily to most people.  But we don’t have the same circumstances.  So, please, think before you pass judgment on a mom or dad and a child who is melting down.  We are trying to work with CHANGE.  And we hope others will CHANGE as well.

Thanks for reading today.

The Journey Continues

Welcome to another year of The Thirty Days of Autism Project.  Although I anticipated that this would have been a one-time deal, I decided on another go ’round.  However, this year will be a bit different, mostly due to the fact that our family will be expanding in the next few weeks, and I’m sure I will be otherwise preoccupied 🙂

Anyhow, this year, I will be posting as I can, and as ideas come to me.  The one thing I learned from last year is that it’s best to write as things come up, while everything is fresh, and sometimes raw.  I will probably revisit some of the same topics as last year, and discuss how things have changed.  I am excited to once again share the fears, the tears and the joys of parenting a child with Autism with you.

Day Thirty

Autism is Love

Welcome to Day Thirty.  I know I am a little late, but we are here, and we are at the end.

I have said many things about Autism.  Some things have been difficult, some things positive.
But there is one thing that I would like to say about Autism.  It is pure.  It is not deceitful.  It is honest.  It is love.

I don’t know who said this, but I am going to use it anyway–“People with Autism do not lie, do not judge, do not play mind games.  Perhaps we can learn something from them.”

Autism has taught me so much.

It has taught me patience I didn’t know I had.

It taught me how to communicate without words.

It taught me that things are in God’s hands, but He is more than willing to give me the tools.

It taught me that a four year old child can still hold your hand

And give you kisses

And smiles

And love

Without caring what other people think.

It taught me to love without limits.

I thank you so very much for sharing this experience with me.

Day Twenty-Nine: Where I See Matty Next Year

More Happiness

Matty–

You amaze me.

Every day you change–some for the better, some not for the better.

I look at you and I see nothing but potential.

I see growth.

I see hope.

Next year, when I see you, you will

Be talking

Be interacting

Be healthy.

You will continue to touch the lives of

Your parents

Your grandparents

Your teachers

Your church family

And those around you.

You will be able to tell me when you hurt.

You will be able to throw a ball back and forth to another child on the playground.

You might take a nap on occasion, though I’m not going to hold my breath.

You will anxiously await your turn to sit on Santa’s lap

and leave carrots for his reindeer.

You will sit down long enough for Mommy to read a passage out of the Bible to you, and maybe an Elmo book, too.

You will be able brush your own teeth

And use a fork

And a spoon

And put your shirt

And shoe

And pants

On by yourself.

You will love and be loved.

You will continue to touch hearts and

Lives.

Matty–

When I look at you

I see opportunities that are

Endless.

I see hope.

Day Twenty-Eight: Autism–A Day and Night Job

Work and play

By now you know that Autism is a full-time job.  Collecting data, preparing food, coordinating with umpteen hundred service providers, administering vitamins and other medications.  But I also hold down a full-time day job as well.  Doing what?  Funny you should ask.

I hold a degree in social work, and have worked in various fields over the last ten years from foster care to domestic violence.  Now, I proudly serve individuals with intellectual and developmental disabilities.

I got into the field just by chance.  I was looking for something part-time, so I could spend time with Matty and also have a career.  The job in the paper sounded perfect–event coordination, advocacy, fundraising for individuals with intellectual and developmental disabilities.  Long and short of the story, I got the job.  And I got a firsthand account of what Autism looked like, and noticed that it was remarkably similar to what was going on with Matty at home.

I was very, very blessed to be working in the field at the same time that Autism made itself known in my household.  I was also very, very blessed to have many professionals at my disposal who knew the ins and outs of the various systems and could point me in the various directions I would need to go.  Without that experience, I don’t know if Matty would be half of what he is today.

I now work for an organization that assists individuals with all disabilities–hearing, vision, intellectual and developmental (including Autism)–obtain meaningful employment.  I was fortunate enough to be involved in the development and instruction of twelve-week training course for individuals on the Autism Spectrum to learn job skills, ranging from social and safety skills on the job to actual task analysis of working in offices, outdoors, with animals, food service and some other specialty areas.  Several individuals have obtained employment, which makes me so proud.

Some days it is difficult.  But the overwhelming majority of days are awesome.  I feel fortunate to have Autism as a day job, and purely and utterly blessed to have it as an evening one, too.

Day Twenty-Seven: It’s the Most Awful Weekend of the Year

The Bloom is a bust for Matty

Every year, on the last weekend of April, the area where I live is overthrown by carnies, funnel cakes, crafts, carnival games, cotton candy and grown men and women who look like a pink and green flowers upchucked all over them.  Yes, it is the Shenandoah Apple Blossom Festival.  Not many cities shut down for a festival, but this one does.  City and county government, schools, banks, nonprofits–they all close to celebrate two days of carnivals, parades, craft shows and all sorts of other stuff.  People come from around the nation to this thing.  It’s a big deal.

And in my house, it is a really big deal, but not for the same reasons.  It’s a big deal because a supposed fun event turns into sheer chaos and is just overall not fun for Matty.  On Friday night, there is a huge firetruck parade–I’m talking two and a half hour parade.  There is music, bagpipes, sirens, etc.  Most little boys Matty’s age would be drooling at the sight of so many firetrucks, but due to Matty’s sensitivity to noise and bright lights, it is not the greatest of occasions.  But, since my stepdaughter is “neurotypical” (which means her brain functions as a typical person’s), we try to engage in the fun of the festival for her sake (plus it is like a huge class reunion for my hubs).  We tried to prepare Matty for the parade–we brought his gun earphones, stim toys, etc.  He was having a great time until the bagpipes started–from a half a block away.  I placed the earphones on, but he ripped them off immediately and had a huge meltdown.  Needless to say, Matty and I left.

Today, we attempted to go to the carnival.  He enjoyed looking at the ferris wheel from the car, but as soon as we got out, another huge meltdown.  We hadn’t even made it to the entrance before I asked for the keys and immediately left.  I started to cry (because I am a huge crier) because I feel like Matty is being deprived of something that most kids his age would enjoy.  Just like Christmas.  It is absolutely heartbreaking when your child can’t enjoy things that other kids can.  Fortunately, a friend from church was home and I was able to spend the day with her and her little boy, which made me feel a ton better.  Left to my own devices, it probably wouldn’t have been pretty.  I would have sat in misery, angry that my child couldn’t do something that he doesn’t even understand anyway.

My point today is one that I have already made.  Autism is isolating, not just for the child, but for the family as well.  While I love my child with all my heart and all my soul, it is so hard not to be jealous of all the other kids who are able to enjoy the event.  I can picture them in their twenties or thirties, talking with their parents about some of their greatest memories growing up were going to the Apple Blossom Festival.  I want to give Matty the best and create wonderful memories with him.  It’s hard to even know what, if any, kinds of memories I am creating with him now.  So to you parents like me, you are not the only ones who feel alone and sad.  For parents who don’t share in my experience, please offer your support–a kind word, a listening ear.  You will make more of a difference than you will ever know.

Day Twenty-Six: What I Would Give…

Matty–

What I would give for you.

For you to be able to speak to me.

For you to experience childhood in the most wonderful way.

For you to not have to fight for the simplest things.

For you to feel safe in your community.

For every environment you walk into to feel warm and welcoming.

For you be able to play with other children.

For you to have friends.

For you to have the world at your fingertips.

For you to have every opportunity you desire.

What I would give

To see inside your head.

To understand what you are feeling.

To take away your pain.

To make the world understand that you are amazing.

And gifted.

And brilliant.

And worth every minute of every sleepless night

and every dollar of hard-earned money

and every ounce of respect from the world around you.

Matty, I will give all I have

because all you are is

all I have ever dreamed of.

Day Twenty-Five: Babycakes…Part Deux

More Babycakes...Be Still My Beating Heart!

Let me just say that Jesus has a great sense of humor.  I searched every book store in the county for this book, and after two hours of searching, I opened an Amazon.com box that had been in my hallway, and lo and behold, there it was.  Babycakes Covers the Classics–Erin McKenna’s second cookbook (courtesy of my favorite Laura H.).  As you may remember, I ADORE Babycakes.  They have the best gluten-free, dairy-free, vegan treats around.  I fell in love with making their icing from the first cookbook (even got some of my coworkers hooked on it),  and have even made the Triple-Chocolate Fat Pants Cake for his birthday. There isn’t a week that goes by that there is not something created from the Babycakes cookbook in my kitchen.  So, really, this made my day.

This second cookbook has a lot of really great recipes in it.  I was very excited for the Rice Krispy Treats–not  only because Matty and I love them, but because all the other gluten-free ones that I have tried tasted like cardboard.  But not Babycakes.  Coconut oil and vanilla were the two ingredients that really made the zing in the recipe.

Rice Krispies the Babycakes Way

I made this on batch on a Wednesday (pictured to your right) and by Thursday, we had a few crumbles left (Who am I kidding?  I couldn’t even take a picture of a complete pan without first digging in).  Yeah, they were THAT good.  And you can ask my husband.  Matty and I are very picky about our Rice Krispy treats.

One of the things that I most looked forward to in the cookbook was the donuts section.  Before we got the official word on the food allergies, Matty could down a whole box of Tastycake white-powdered mini donuts without blinking.  It was heartbreaking having to take those away from him, not only because he loved them, but because I loved giving them to him.  But thanks to Babycakes, I can now create those lovelies in the comfort of my own home–and they can be healthy, too.

Throughout this project, some funny things have occurred to me, and one of the funniest has to do with the fact that most of my favorite memories involve food.  And what do you want to do with your favorite memories?  Recreate them and pass them down.  But when your child has Autism, you can’t recreate those memories exactly.  You have to tweak them, change them up.  And thanks to Babycakes, I can.  Thank you, Erin McKenna!