Tag Archives: parenting

The conversation–how and when to tell your child about Autism; our version

How and when to tell your child he or she is different and special is a huge topic of debate. I see it all the time on facebook pages. I generally respond- with a very condensed version of how we handled the conversation. I thought I had blogged about it, but apparently not. So here it is…..
The Brick was older, as ASD diagnoses go, when he was diagnosed. At five he got an ADHD diagnosis, and then at seven got a behavioral/mental health diagnosis. It wasn’t until just after his eighth birthday, and a year of us not being fully satisfied with the diagnosis and services, that he got an ASD/Asperger diagnosis.
As an SLP who worked with lots of little ones with Autism and Asperger I couldn’t believe I had missed it, but you know what they say; “If you’ve met one child with Autism, you’ve met one child with Autism.” And—that’s a whole other post.
Since the Brick was older, he was very aware he was different than the other kids. He learned differently, behaved differently, played differently, was, and still is, simply different. He would ask ‘why’ and until we got the Asperger diagnosis, we didn’t really know how to answer him; we did our best though. As we waited for our evaluation appointment, and all through the testing process, we know he heard the words Autism and Asperger, but never asked what they meant.
When we received the diagnosis, I cried. Not in fear, or sorrow, but relief. We had a name, now we could face it with knowledge and strategy! Within a week or so of receiving the diagnosis, the Brick had a rough day and asked what was ‘wrong’ with him. I fought back the tears and sat down with him. Hubs sat with us and we started talking. It went something like this…….
“You know how everyone has things they are good at and not so good at? Some people are good at math or reading or sewing or building things but might not be as good at cooking or gardening or writing. Daddy is really good with wood working and fixing things, but mommy isn’t. Mommy can sign and grow vegetables, but daddy can’t. (Brother) is really good at math and reading, but can’t keep his room clean. We all are good at some things and not so good at others.
Sometimes when we aren’t good at something we need extra help. If you can’t see well, you get glasses. If your teeth aren’t lined up right you get braces. If someone isn’t very good at reading they may stay after school to get help. If someone isn’t very good at cooking, they could take a class. If someone has trouble walking they may go to physical therapy and may even need to use a walker or wheelchair. Mommy, daddy and (brother) all wear glasses or contacts; we need help seeing well. We see people at (speech) therapy that are in wheelchairs; they need help walking and getting around. (Brother) needs help with his behavior because of his ADHD so we work with him.
You are great at building with LEGOs. You have an amazing imagination. You are so creative and funny. You are so good at figuring out how to make something work. But, you aren’t as good at staying calm when you are mad or talking with kids to make friends. You know what though? There are actually a lot of people in the world that need help learning some of the same things you need help learning. It’s called Asperger Syndrome. It is named after the man who figured out that some people are really good and this group of things, but need help learning that group of things. His name is Hans Asperger. And, you fit into the group of people he discovered. So doctors will say you have Asperger Syndrome. All it means is that you are good at some things, but need help with other things. And, you know what else? Now that we know that you fit into this group of special people, we can help you better. We love you for who you are, no matter what you are good at or need help with and we will always do our best to help you and find other people to help you if we can’t. OK?”
A few days later we Googled ‘people with Asperger’ and compiled a list of people he would recognize. Since he was a bit older it was easier to find people. If they were actors or actresses we paired them with a movie he had seen. If they were musicians we paired them with a song. And we definitely mentioned Satoshi Tajiri, the developer of Pokemon.
That is how we had the conversation with our son. It worked well for us. I know it helps him to identify with a group of people who are, more or less, like he is, to know he isn’t the only one, to know he isn’t alone and that others have the same challenges. Over the years he has identified with the good that Asperger brings him. He, at times, hates it and wishes it away, but that won’t happen and he knows it and we work through it.
We believe in speaking honestly with our children, at an appropriate level. What and when you have the conversation with your child is up to you. We believe telling the Brick the reality early on, facing the elephant in the room, has helped him, and us.

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.

Friends

I wanted to take a moment to thank my friends for sticking with me.  I know I am not the most responsive friend.  I try to be there when you need me.  I try to respond with a phone call when I hear you have something, bad or good, going on.  Sometimes I only get a text sent.  I try to be there to support you and lift you up when you need it.  I do my best, I promise I do.

With all I have going on as a ‘homeschooling mom of a child with Asperger’ and a hubby that travels quite a bit for work, I do not live up to most people’s criteria of a good friend.  I do not call or text regularly, but rather sporadically.  It is not that I don’t care.  There are just some days that I do not get to the phone.  I mean to.  I think of it 10 times during the day; while in yoga class, while in the shower, while schooling my son, while cooking a meal……

I have had many friends come and go.  People who do not understand the life I lead, who don’t see the daily stuff.  I have had acquaintances not turn into the friendships I had hoped to foster.  

So, Thank You.  Thank you for knowing who I am and what I stand for.  Thank you for knowing that you are always in my heart, thoughts and prayers.  Thank you for not giving up on me.  Thank you for standing by me.  Thank you for understanding my life and my son!

I love and cherish each of you!

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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.

hindsight

The Brick has been out of sorts the last two weeks.  At first we blamed it on the upcoming full moon.  He seems to respond to it the three to five days beforehand.  Next, we blamed it on some schedule changes and the Teen’s back to school schedule changing since he decided to join rowing crew.  After that, we thought it may be my father-in law’s (FIL) medical condition (He was diagnosed about 3 months ago Acute Myelogenous Leukemia.  It is an incurable form of Leukemia.  He has not been responding well to the chemo therapy treatment to slow/manage the process.)   Then last night Hubs asks when we last had the Brick’s med levels done.

A-HA!!!!!

The Brick seems to go through a pattern with one of his meds.  He will take dose A for about a year, then his levels get too high so the doc backs off the dose.  Then, about six months later he will start to get agitated and combative, more in the evenings but during the days as well.  Guess what?  It has been about 6 months since the med dosage was decreased.  I will call tomorrow and request labs so we can have the results for our visit after Labor Day.

The last two weeks have been really rough; I am very relieved that we think we know what the issue is.  We hope.  But there may be more to come.

This morning we told him, we had already told the Teen, that his grandfather has decided to stop chemo therapy.  It is not managing the Leukemia and he has some negative side effects.  We knew this would come, we hoped it would be further in the future.  We live close (about 45 minutes away) and see him and his wife often.  We know this will have an effect on the Brick.  My father passed away just over a year ago after a relatively long period on Hospice.  This is not new to us but seems so unfair.  Our boys just lost one grandfather that they were very close to and now they are losing the other.  We do not know how long we have.

We had plans for brunch next weekend, but my FIL was feeling pretty good this weekend and my sister in law and her daughter are in town, so we went over this morning instead.  It was a nice meal and time together.  We spent a little time at the yacht club pool after we ate, so the kids could swim.  There were two other families there.  All in all things went well, but the Brick was ‘off’ and confrontational with his brother and me.  I know the Brick doesn’t always have the mental health/emotional vocabulary to express himself well and that he will often ‘act out’ when dealing with anxiety, unfamiliar emotions and stress, so I gave him a little more slack today than usual.  He was riding home with Hubs and I was taking the Teen so we could run some errands.  I kissed him bye, said I love you and sent him off.  One of the other moms there comments, “We love them when they leave.” And she chuckled.   It struck me so strongly that I was speechless.  I quickly gathered our things and the Teen and left.  In hindsight I wish I had thought to say

“I always love him.  It’s his grandfather dying and his Autism that I dislike.”