Tag Archives: ASD

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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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!

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Social skills, another set back and perspective

We went to the ‘intake interview’ with the new social skills therapy company today.  The brick was excited about the prospect.  Here is the program……two hours an evening for a week (total of 10 hours) of social skills training (this is where they introduce the kids to the concepts of social skills, why they are important, how we use them, why we use them and get them used to the lingo), then a planning meeting where all the middle school kids pick what they want to do for outings during the bi-weekly events all summer.  Plus there is a bowling group that also meets bi-weekly.  Sounds pretty good, right?  The brick thought so too.

We arrive and go back with the director.  She starts the ‘get to know you so I can be sure we put you with the right group’ conversation and questions and the brick does ok, until he gets bored.  Then he starts using poor social skills (playing with his shoes, not looking like he is paying attention, laying on the couch) and gets called on it.  INSTANT shut down and he leaves the room.  I know he is going to the lobby and that he will not leave, so I leave him alone.  Great, we just failed the interview!

The director and I continue to talk and it becomes obvious very quickly that she does not think he is ready for the group.  I do not fully disagree, but where else do we go?  What else do we do?  To work on group skills, social skills, getting along with others you need a group.  You cannot achieve these skills in 1:1 behavior therapy.

I am in tears and pleading our case.  She asks if this is ‘typical.’  Hhmmm?? How to answer….Do we see this daily? No.  Is this how he responds to anxiety ridden new situations where he is called out? Yes.  Help us, please?

She goes on to finally state that he is not going to be allowed in the adolescent group because they cannot risk his walking off.  I get it; I really do—but now what?  What about the 5th grade LEGO group?  She suggests.  YES!!!!  He will be the oldest, but only by a matter of months (he will be entering 6th grade) and he LOVES LEGOS!!  That may work.  She also suggests we arrange more 1:1 therapy, but more for counseling than ABA. Ok, maybe??

Meanwhile, he has come back into the room, sulked, been asked a few questions and thrown the tissue box at the director’s feet.  SIGH!!!  Really bud??  You want friends!  You want help!  You want to learn these things!  You told me so.  You tell me so regularly.  Why do you strike out so much???  I am so confused!  Out he storms again.

The director and I wrap up.  She says “I am not giving up on him.  Let me figure this out and talk with some of my staff.  We will get him in somewhere.”  Really?  You are going to work with us?  You are not just going to send us on our way?  I think I love you!

We wrap up and the brick and I leave.  I am still teary and he knows it has to do with his behavior.  I try to downplay it, but still let him understand that I am upset that he sabotaged another activity.  I do NOT use those words with him though.

Then he says “Can I go apologize?”  WHAT??  “YES!  Yes you can.  Do you want me to come?”  So in we go and he apologizes.  The director responds with something like “Thank you, it means a lot that you came back.  I hope you decide to come back and join one of our groups.  We would love to have you.” 

SIGH!!  Maybe this will work out……

We head home and I drop him at the house so I can go work.  I am off to do speech therapy with an 8 year old with Down Syndrome that I have been seeing since before her 2nd birthday.  I have seen her grow up, I adore this family!  I walk in to a stay home dad and the girl.  The dad states he has bad news to share—he looks like the world has ended.  My first thought—they lost Medicaid and they have to drop my services.  Nope—worse!!  Her heart condition has worsened and she will need open heart surgery, fairly quickly, because her heart is double the size it should be and one of her valves is basically not working, it just kinds flops around not really controlling any blood flow.  And when she has eye surgery a few years ago, they almost lost her several times because her oxygen levels drops really low when she is on anesthesia.  The surgical team was supposed to meet Monday, but were actually meeting at that moment and they are scheduled to go in next Friday to discuss the surgery plan.  WOW!  I fight back tears.  After the last two hours this was not what I needed to hear.  I love this child and her family (probably more than I should—there is a professional line).  They will be in my prayers….

And I thought my day was bad?!?!