Tag Archives: kids

Parenting lessons from a……chicken?

We have nine hens.  We use them for fresh eggs.  Every so often one goes broody.  This means she decides she wants to be a mom.  She will sit in the nest on eggs and care for them.  Now, we don’t have a rooster, so none of the eggs are fertile.  We have always discouraged the hens because they will not lay eggs while broody. 

Recently, we had another hen go broody so I called a friend who has a rooster and asked for some fertile eggs.  We moved our hen, Laurel, from the coop and put the eggs under her.  She sat like a champ for 21 days!  Then Saturday morning we woke to little peeping sounds.  We couldn’t handle the excitement so we moved her a bit and peeked under.  Sure enough a newly hatched chick. 

Well, Laurel started pecking at it and being nasty.  She did the same thing with the next chick so we removed the first three that hatched.  Then, I had second thoughts.  What if she wasn’t pecking?  What if she was picking off small pieces of shell?  What if she was trying to get the babies back under her in the right places?  What if that is just normal maternal chicken behavior?  We got brave and put the three hatched babies back under Laurel right as number four was emerging from the shell.  And you know what?  She gently moved them under her and all has been fine.  Five more babies and 48 hours later and they are all doing great!

So what is the parenting lesson?  What did I learn from a chicken?  This—

As moms, and dads and people in general, we need to trust each other.  We need to stop judging the actions of other parents as right or wrong and trust that they are doing what they know to do that is best for their family in that moment.  We all have different children.  We are all different people.  We all come from different family backgrounds.  We come from different cultures.  No baby comes with an owner’s manual.  We all do what we think is best for our family.  We should trust in that!

The parenting choices are endless.  Naturally occurring labor or planned induction; vaginal birth or c-section; medicated or un-medicated birth; breast or bottle, co-sleep or own bed; cloth or disposable diapers; jarred food or make your own; organic or not; swing, jumper, play mat; open cup or sippy cup or straw; soothe to sleep or let the baby cry it out?  And this is all in the first few months……

When you throw special needs into the mix it becomes even more complex.  You now have to choose doctors, specialists, therapies, therapists, diet, medication, education, the list goes on and on.  When looking at other parents it is easy to get caught up in what your choice would be, what has worked for you or what you view as right or correct.

Back to our hen.  She got defensive when I stuck my nose into her parenting (OK, it was my hand in her nest, but you get it).  I know I get defensive when someone starts questioning or criticizing my parenting.  I am not perfect, no parent is.  I choose and act in the moment doing what I think is best for my child/family in the moment we are in.  In a different moment I might choose differently.  You might choose differently.

I promise from now on to not jump to assumptions or judgment when I see a parent doing their best, even if I disagree.  I am not you and you are not me.  My child is not yours and yours is not mine.  We should be in this together.  Will you promise too?

**Obviously I am not referring to abusive behaviors.  Physical and emotional abuses are not acceptable and should be reported.

Numbers

With the CDC releasing new Autism prevalence numbers, 1 in 68 (1:42 boys, 1:189 girls), so close to World Autism Awareness Day I expect there to be a huge outcry encouraging us to “cure Autism” and “be aware.”  While I recognize that many families feel a cure would be a blessing, there are many families that do not want a cure.  (I do not want to enter that debate right now, I can see both sides)   Awareness is good as well, but it’s not enough.  What we need is acceptance and change.

If 1:68 children born in 2002 have an Autism Spectrum diagnosis, the National Autism Association estimates that there are 60,000 twelve year olds in the US with Autism.  That’s a lot of kids.  That works out to be almost one per grade, per class period in our neighborhood middle school.  In a few years those children will move to high school, then college (hopefully) and then the world.  Then what?

I know there will always be a push for a ‘cure,’ but that is years, decades away, if ever.   I suggest we push, today, for meaningful change that will impact our children and adults on the spectrum now, not in 20 years.  Change in funding, in services, in education, in supports but most of all in acceptance.

Many states now have insurance mandates, but many companies, for a variety of reasons, are exempt from these mandates.  My husband’s employer is one of those.  We do not get ABA as a covered service; we do not get speech therapy as a covered service.  Many families do not have access to the single most researched and effective therapy (ABA) through insurance.

Many schools do not provide adequate supports, especially in the upper grades, for students who are on the Spectrum.  Our neighborhood school was going to be able to provide facilitated support in three of seven class periods.  More than half of our son’s day would have had no supports other than the general ed classroom teacher, who may or may not have any training in ASD and education.  We live in one of the top districts in our state and this was what they had to offer.

Employers are beginning to seek out Aspies and Spectrumites who have specialized skills, and that is fabulous, but what about all the others?  Employers do not understand the unique needs of adults on the spectrum.  Many would make excellent employees, but there needs to be an effort on the part of employers and corporations to help find the right fit.  Data from the National Conference on Autism and Employment  estimates up to 90% of adults with ASD are un- or under employed.  This is not because they don’t want to work or are lazy, but because they cannot find the right job with the right employer.

According to Holly Bortfeld of Talk About Curing Autism, “The federal government has spent $1.6 billion on autism since 2006, but the money is not helping those affected in meaningful ways. We need to improve medical treatment for the many co-occuring health concerns of individuals with autism and address the wave of students who are aging out and entering an adult world with no plan for them. ” I feel we also need to improve insurance coverage and accessibility of treatment throughout the life span and the quality of school based services.  We must have more support for adults and employers.

Funding aside, we should also be working toward acceptance.  Awareness is one thing but acceptance is what we need.  We, as a culture and a society, need to learn to appreciate the way others look at or view things.  We need to listen to and accept different ways of thinking.  We need to understand that the ‘normal’ way is not the only way, the best way or often the easiest way.  We have so much to learn from individuals with Autism in our communities.  We just need to open our eyes and our hearts to them.  We need to open our minds to a different perspective……

If you are touched by Autism, please stop asking for awareness and demand change and acceptance.  If you do not know anyone with Autism, please take the time to educate yourself on Autism.  You just might find a new, beautiful way to see others and the world.

At least……is really a lot!

After having a bunch of questions on my facebook page about how our new journey into homeschooling is going, I had planned on writing about that.  Then Autism reared its ugly head and got in the way of what was going fabulously.  School started out (and for the most part continued) going very well.

(There is some back story here for new readers, sorry for the redundancy)

About the time we started our ‘school year’ we noticed the Brick getting more confrontational and combative.  It started small and was not a big deal.  We wrote it off to anxiety about homeschool.  Even though it was what he wanted and what we wanted I am sure he was a bit anxious—I know I was.  Then we thought he was missing his brother who attends public high school.  The Teen decided to join rowing crew and now practices Tuesday –Friday after school and on Saturday mornings.  So, the brick has gone from seeing his brother most of the summer to hardly at all.  While they are not super close, the Brick does idolize the Teen and love doing things with him, in a love hate kind of way.  The behaviors were slowing increasing in frequency and intensity.  

Then we thought the attitude was his way of dealing with the news that his grandfather (my FIL) was going to discontinue the chemotherapy he was trying.  He has a form of leukemia that is not curable, but, in some people, chemo can help slow the process.  The chemo was not working for my FIL and was causing many unpleasant side effects, so he decided to stop it.  The Brick saw his father cry for the first time when we told him. 

Then Hubs says to me one night “When was the Brick’s last blood level done?”  Wall-ah!!  Every year or so we have to decrease the mood stabilizer because it builds up and the levels get too high.  We did that about a year ago.  I called the pediatrician and asked for labs to be done prior to our visit, which was yesterday. 

Meanwhile the Brick is off the Melatonin because of the new research about how it impacts the pineal gland (and growth/puberty) so he is not sleeping, he lost enough weight that the endocrinologist ordered labs for growth hormone evaluation and he is more and more combative. 

We get to the pediatrician’s office and it turns out the med levels are perfect—right smack in the middle of the range where they need to be.  We discuss all the other concerns and come up with a plan.  Leave med A alone since it is at a therapeutic level, increase med B (which has side effects of sleepiness and increased appetite—bonus!), remove the ADHD med (hoping it is at least part of the weight loss problem since it is an appetite suppressant) and refer to a gastroenterologist to rule out allergies, gut issues and gastritis.  I remind the doc we already looked at allergies, Celiac and gut issues.  Since the Brick is describing some Gastritis symptoms, we stick with the GI referral.  She calls in all the med changes, I call to schedule the GI (actually got an appointment for next week with the doc we used to see) and move on.

This morning, when the Brick woke, I added the increased dose of med B and did not give the ADHD med.  I made him breakfast and reviewed the day’s school work.  I left the independent work with him with instructions to pick two items and do them while I was gone.  I get home and the work is not done.  But, he has eaten 800 calories!!  I had another errand pop up and I ran to that with the thought that without the ADHD med, he may be having trouble focusing.  Give him a second chance.  I sternly remind him that we are going to LEGOLAND Friday and he needs to get the work done; please do two assignments while I am gone.  I get home to one assignment barely started and not done correctly (out of carelessness).  <sigh> 

I move him to the classroom area and I start to explain his error—he blows up.  <deep breath> Change the assignment a bit so he doesn’t have to redo it.  Nope—he storms off.  I give him a few minutes to calm down and go talk to him.  He is almost asleep!!  As I am typing he is fast asleep—this is my child who does not nap, and does not sleep before 11pm.  I will give it until Thursday and then call the pediatrician and let her know how it’s going.  With the increase in med B being one am pill and one pm pill, we thought this might happen.  At least the solution is easy—both pills in the pm.

At least…….

I started writing this after posting a comment on my facebook page that read “And now he is sleeping……I hate med changes, I hate the adjustment, I hate the guessing and balancing. Right now I hate Autism.”  But as I have been typing my outlook has changed.  I still hate the med changes, the adjustment, the waiting to see, the guessing, the balancing, the side effects and the Autism but I have realized that at least we have a good doc who works with us, at least I have a supportive husband who even when out of town can help out with a different perspective, at least I have a supportive family and network of friends, at least we have the ability to homeschool where he is safe while his body and brain adjust, at least we have the ability to homeschool so we can work with him during times like these.

The school work can wait; we will get it made up.  The Brick is the most important piece in this whole puzzle and as long as he feels safe and protected the rest can wait.  All of those “at leasts” add up to something pretty big.

 

PS—if anyone ever tells you writing is not therapeutic, don’t believe them!

The Aspects of a Tragedy

I didn’t hear about the Stapleton family’s tragedy until this morning.  Then it was bits and pieces, no complete story.  I finally found Kellie’s blog and read the last couple entries.  Then I sought out a news report.

First, I want to say that I in NO WAY condone or understand what happened.  I do not walk in Kellie’s shoes, I do not fight her fights, live her life.  I do know there is always a choice and always help.  The help is often hard to find and when you do it is still difficult to get.  I also know that all life is valuable and that those with disabilities have just as much right to live and be happy as the rest of the world.  I could even argue that they have more right because they often fight harder, have bigger hurdles and are not treated as ‘real’ members of society.  Kellie’s choice was wrong.

But, I also understand the pain, fear, hopelessness and helplessness of feeling like you are not reaching your child.  That what you are doing to help is a waste of time and money and not helping at all.  I understand the fear of your child’s behavior, of not knowing when the next explosion will happen, what will trigger it or how significant it will be.

As Autism families, I think we sometimes feel broken.  We are not the broken ones though.  We are the ones striving to be whole and complete.  We do whatever, whenever to help our children.  We look for ways to include them, make them feel safe in a world that is often too overwhelming.  WE are not broken and neither are our children.  It is society, education, insurance and government that are broken. 

We fight to have our children included.  We fight to not respond to the stares, snickers or comments when we are in public.  We fight for inclusion.  We fight for access to ASD classrooms and services.  We fight for paras and appropriate education.  We fight for teachers to see our children’s strengths and help build them, not just look at the deficits.  We fight for speech therapy, occupational therapy, feeding therapy, behavior therapy, ABA, social skills therapy, social skills groups.  We fight for medical coverage for co-existing diagnoses.  We fight for laws and equality.  We fight for adult programs to support our children, who will grow up.

All this fighting is hard.  It is emotionally, physically and financially draining.  It leaves us feeling battered and bruised.  It leaves us feeling stressed.  It leaves our families feeling stressed.  It leaves our spouses stressed.  It often leaves our spouses and other children feeling left out or neglected.  It leaves us feeling guilty.  At the end of the day it leaves us feeling hopeless, helpless and defeated.

Don’t get me wrong, there are good, even great magical moments.  Small goals or milestones being met, new skills achieved, a day with no call from the teacher or school, a play date that lasted the full planned time.  There are even days or weeks where things seem ‘normal.’  Days when you can almost forget the battles you fight non-stop.  But it all cycles back around and the ever changing ebb and flow that is Autism shows its face again.

While we will all be quick to join one side of this controversy, I propose we do not judge this mom, this family, this situation, but that we unite and seek change.  Regardless of our stand on this tragedy, I think we can all agree that we need to make society, schools, insurance companies and the government aware of what we do, how hard we fight, every day.  We need them to be aware of hard it is and how little help there is.  We need to improve the system.

A single bad day does not drive a mom to think, let alone act on, the unthinkable.  A bad week or even year does not push us into that dark of a hole.  But a lifetime of fighting, climbing, pushing and begging that all goes unanswered does.  I have been there, in that deep dark hole, wondering how we were going to get out, how we were going to get better and move on.  It was not easy, it didn’t happen quickly, but it did happen.  It doesn’t stay sunny and bright either.  Occasionally we fall back into a hole and have to climb back out.

As you choose your ‘side’ and make your comments, either to friends, family, co-workers or on facebook, twitter and in blogs, please remember that while this mom made an unforgivable choice, the system failed Issy and her mom.

In good times and in bad…..

Image

Hubs and I were lying in bed last night discussing our anniversary and how, for the second year, we just kind of skipped it.  I was reiterating that it was really no big deal.    (In case you missed a facebook post or are new to the page here is why.  Our anniversary is June 9.  A year ago my father passed away on June 6 and his service was on the 9th.  This year as we remembered my dad’s passing, my husband’s father was diagnosed with Acute Myeloid Leukemia.  Celebrating took a backseat.)

“If I need a ‘special day’ to feel loved by you, then we are in trouble and wouldn’t be having a ‘special day’ at all.  I think we do a really good job of letting each other know we love the other every day of the year.”  I joked.

He starts to laugh and says “OK, since we express our love for each so other so well 365 days, next year we should go in opposite directions and do something for ourselves.  If we take care of ourselves we can be better for the kids and each other.”

“Nice try, but I think we do a pretty good job of getting ‘me’ time throughout the year as well.  I like spending our anniversary together, even if you power wash the deck and I clean the house and do laundry.”

We laughed a bit more, said ‘I love you’ a few more times and settled in to sleep.

Maintaining a quality relationship with your spouse is hard enough after 17 years of marriage.  Like many couples, we fall into ruts.  We take each other for granted.  We lose the appreciation we once had for the small things.  Add in a child with special needs (Autism in our case) and it becomes even more difficult.  After a day of therapies and tantrums, intimacy is often the last thing on our minds.  When we crawl in bed sleep is all we long for.

I adore my husband.  He is my best friend and an amazing man.  He is kind, compassionate, affectionate, genuine, funny, dedicated, honest, loyal and, in my opinion, pretty sexy.  He is a patient father.  He spends time with the boys.  He is has been a scout leader for eight years.  He helps the boys become the men we want them to be, the men we know they can become.  I know he feels the same about me.  But that doesn’t make it easy.

The hubs and I have made an effort, we actually have to think about it and remind ourselves, to make time for ‘us.’  Sometimes we go out for lunch or dinner; sometimes we steal a few moments in the middle of the day, sometimes we are lucky enough to get a weekend.  These small encounters allow us to rekindle our relationship and enjoy each other the way we used to.

We also take time for ourselves.  Again, small things; I may get a massage, he may go to the shooting range, coffee or lunch with a friend or just time alone to unwind, going to the gym or taking a yoga class.

It is not easy to find time for ‘me’ or ‘us.’  But—we have discovered that if we take care of ourselves, our personal needs for time away, time with friends, time to unwind and leave our hectic demanding life behind for a few moments, we are better for each other.  When we are better together, our marriage is better and our relationship grows.  When our marriage is better we are better parents.

Take a few moments for yourself today (even if you have to hide in the closet or bathroom—I’ve been there too).  Do not feel guilty or selfish in doing something for yourself.  You deserve it, your spouse deserves it, and your kids deserve it.  You will be a better person overall.

The day (OK , the second day) the Earth stood still…..

June 6th, the day I will skip next year.

June is typically a good month for us and, until a year ago, the 6th had no meaning.  My mom’s birthday is the 4th, my husband’s step mom’s birthday is the 8th and our anniversary is the 9th.  Father’s Day is in June, the beginning of summer, the kids are out of school and summer vacation is still ‘new.’  Not a bad month, right?

Last year on June 6th, my father passed away.  It was a long process; we knew it was coming.  We were relieved, for my dad and his suffering, when it finally happened, but mourned greatly for our loss.  My dad was ready; he had been for a while.  It was no surprise, but was still very hard to deal with.

As we approached this anniversary I knew my mom’s birthday would be rough, but she handled it very well.  The day (today) arrived and things started as usual.  I went to yoga, dedicated my practice to my dad and had a great class.  I tried to contact my mom (who lives, literally, next door to us) and could not see any lights on.  I knew the day would be rough and did not want to wake her if she was sleeping.  Mid morning I finally called and got no answer.  A few minutes later she called me.

The conversation started as expected…rough day, tears on both sides of the phone.  Then she tells me she just talked to my sister. 

At this point I need to back up and give some history.  A while ago….many months, maybe close to a year ago, my sister’s little ‘Toto-like’ dog got hit by a car and passed away.  She was devastated, as was the Brick.  When my sister had visited last summer, before my dad passed, the Brick fell IN-LOVE with this dog.  He was the perfect blend of cuddly lap dog and feisty little “big dog in a small body.”  Within a few weeks of the dog’s passing, she found a similar sized and looking dog that just seemed perfect.  Not a replacement by any stretch, but a nice addition to her fur babies.

So, back to today.  My mom tells me that she has just talked to my sister and that her new dog has just, like 10 minutes ago, been hit by a car.  He dug under the fence (that was installed in the last year) while my sister was working in her memory garden and ran.  Before she could get him back or get to him, he got in the street.  Oh, my!!  To have him go, the same way as his predecessor and on today of all days!!!  Obviously, she was very upset.  My mom, being half a country away and unable to do anything to help, was also very upset.  Again…the irony.  TODAY??  Really????

The day goes on and things seem to settle.  THEN!!!!  My father in law (whose wife’s birthday is the 8th) has been having some tests done for some blood/white cell issues.  Hub’s step mom called him to let him know that his dad has Acute Myeloid Leukemia.  WTF????  Really?  Not to sound selfish, but today we get this info?!?!!?  Couldn’t the tests have taken longer to get back…just a day??  Haven’t we had enough!  There are three options for treatment:  1. Do nothing and prognosis is 3-4 months  2. Chemo once a month for the rest of his life (this is an otherwise healthy active man)  3. Go through 7 days of massive chemo in the hospital, in hopes of killing all the existing bone marrow blood cells and the new cells growing back healthy, with an additional month of hospitalization and tests.  His decision needs to be made by Monday so he can be hospitalized on Tuesday after a platelet transfusion.

We are strong!  We will move through this and all else we face!  We have faced great obstacles and overcome them already!  Both sides of our family are strong and close.  We have support from and give support to each other.  I do not doubt we will move through this with struggles, tears, strength and hope.  We will recover and thrive.  My FIL will fight and do any and all things he can to heal.  Today was rough, very rough.  But—tomorrow is new day.

Ironically the ‘Daily Ohm’ reading in yoga this morning was about sending out good thoughts instead of negative ones.  About not worrying about family or friends, but sending positive thoughts and prayers forward.  Because, as we worry we fill the world with negativity and that impacts our attitude and actions as well as those we encounter.  Instead, we should send forth positive thoughts and prayers for success and healing, not worry and fret, because the positivity will carry us, and all those we touch in our day, into tomorrow.

Tonight as I reflect on a very emotional day, I send forward thoughts and prayers for healing, closure, love and strength to all of my family and friends.  I send positive thoughts to all of you, to all of the people I encounter and to the world.  In the closing of my yoga instructor……

“In each of us there is a place where the entire universe dwells.  A place that is full of love, light, peace and joy. When you are in that place in you and I am in that place in me, We Are One.” 

My Father’s Ghost…..

Well, not ghost.  Reincarnate?  No, that’s not right either.  You decide….

I was sitting in the optometrist office yesterday while the Brick was getting his vision therapy.  With only a few moments to go before the end of the session, I was trying to finish up a game on my iPad.  The office door opens and I notice a pair of jeaned legs and sneakered feet shuffle in.  For some weird reason I thought of my dad, who passed away June 6 of last year.  My dad almost always wore jeans and sneakers while at home, but so do many men.  Maybe the upcoming anniversary of his passing has my dad in the forefront of my mind.  I don’t know why this pair of legs and feet made me think of him.

I look up at the gentleman the feet and legs are attached to and the tears well in my eyes.  This man, this total stranger, could have been my father’s twin!  I stared—like socially inappropriately stared, with tears welling in my eyes!  The gentleman spoke and the voice was dramatically different from my father’s and I was snapped back into reality.  Knowing the Brick would walk out any second I fought the tears and looked back down at my iPad, still processing what I had just seen.

The inside office door opens and the Brick walks back into the lobby area and says, in a normal volume “Mom, its Grandad!” I could tell by his face and expression he knew it was not really my dad, but that this gentleman looked just like him.  The Brick had a funny sort of smile and odd expression on his face.  I asked how vision therapy was and he replied.  I stood up and we walked outside.  The Brick turned to me and said “He even smelled like Grandad.” 

By this time the tears had returned and I was shaking and crying.  I miss my dad so much and having seen someone who so closely resembled him so close to the anniversary of his passing was just too bizarre.   We got in the car and the Brick asked “Maybe Grandad got reincarnated?”  I replied “I doubt it.  He was ready to be with God and now Grandad is healthy and not in pain.”  “I know” the Brick said “but it would be cool to see him again.”

Yes, it would buddy, yes it would.  Love and miss you Daddy!

Image