A surprising voicemail message… December 6, 2010

I got a surprising voicemail message from Punkin the other day.  “Mom, I’m in the principal’s office and I’m supposed to call you and tell you…  Well, here’s what happened…”

He got in a fight.  There has been a boy at school that has been pushing his buttons since the first week of school. He has sent him home with bruises.  He has issued threats such as “I’m going to kill you.” or “I’m going to stab you with…” (fill in the blank with things such as push pins, safety pins, pencils, and pens).  I think Friday was Punkin’s breaking point and he defended himself.  The unfortunate part is that he said he pushed this kid and didn’t mean to push him as hard.  When the boy fell, Punkin went over to help him up and be sure he was okay.  Unfortunately, the boy responded by pinching his stomach and threatening to stab him again.  “Mom, I don’t know why I got so mad. But, he scared me and I just wanted it to stop.”   It didn’t last long because, “this teacher came out of nowhere and stopped our fight.”  When he was asked by the principal to tell her what happened, he responded with, “Do you want to know from the initial incident or just what happened today?”  Part of the Asperger’s is that matter-of-fact approach.  They can be very blunt and are consistently clarifying things.

Given the time of year, I couldn’t help but think of the famous “Scott Farkus” fight in the movie, The Christmas Story.

It’s a hard balance wondering how to respond to any physical response to these things.  I don’t want him to be involved in fights – EVER.  However, I want him to know that he has the right to defend himself.  He should not have to deal with constant torment.  He has been such a trooper through it all.  I was half expecting this to happen at some point. Someone gave me some good advice: “Never swing first, but always be the last one swinging.”  Like she said, right or wrong it’s been what she has taught her kids.  I think it’s sound advice for us.

It was a very good learning experience for all of us.  He has been very quiet about it because he knows it wasn’t the best response and he is very sorry.  However, I think he understands that he had to defend himself.  It would really be fantastic if it were one of those stories that I hear about with boys where this happens and the message is clear that nobody is going to get away with pushing this kid around.  I’m very proud of him because he can verbalize better what is bothering him and he has walked away from many situations that in the past would have been moments where he shuts down and internalizes the bullying.  He also felt sorry about it after it happened.  The Punkin a year ago would be placing blame, making excuses, and being sorry wouldn’t be part of the equation.

He’s one of my heroes in life.  He is making so much progress and while this event was horrifying to some degree, he gave me a little something to smile about with his descriptions of the event.  His honesty was amazing!

SUCCESS!!! November 19, 2010

We have had a great week with Punkin! He has struggled since the beginning of the school year.  However, this week we got the news that he read to a group in Reading AND he sang a solo in Music.  In addition, he voluntarily shared his lunch one day with two kids who didn’t have one and shared his snack with a girl in his class who said she was hungry.  Anyone in my shoes knows how much of a success all of this truly is.

Apparently, he did a terrific job reading a science text in front of his friends.  His teachers said that the other children showed respect by not looking at him when he asked.  I’m just picturing how that went and chuckle a bit at the thought of how that must have sounded to the other kids, but love the fact that the teachers allowed him to be himself and they were there to support him.

I have sat through so many programs at daycare and school where my mind is busy with two very different thoughts:  1) he must be scared to death and I wish I could rescue him and 2) why won’t he participate, doesn’t he understand how important this is to ME?  The latter was selfish, I know, but I wanted to be that parent that got to hear her child sing.  I wanted to be that parent with videos and pictures of her child smiling and active in the school program.  That wasn’t my experience.  Instead, I have many pictures with his back to the audience; a fearful or upset look on his face; or plain absence because he hid behind the piano and nobody noticing until after the program was well underway.  I’ll admit disappointment and more than hint of jealousy at times.

But, what I DO have a child who makes up silly songs and deep songs about his feelings when he’s alone (and sometimes for me).  He sings along to Bon Jovi.  The Goo Goo Dolls are a favorite.  He sings “Where the Cowboys go” instead of Warrant’s “Where the down boys go.”

Punkin is doing it! He’s more than surviving.  He’s starting to really become more aware of his surroundings.  He’s more aware of his self worth and what he has to offer.  His resilience, patience, and growth is astounding and I’m one proud mom.

This is a great day.

On the Edge – Mental Health in Utah October 31, 2010

I just watched On the Edge – Mental Health in Utah for the second time.  There are some very inspiring people out there that are trying to make a difference.  They gave us a factual picture of mental illness and inspired me to never give up.  Although it’s written for Utah, with Utah stats, I’ll bet most states are in the same boat.

I’m in the process of trying to convince my employer that mental health parity is important.  It’s frustrating to put so much effort and time into this effort while knowing in my mind that I’m probably running head-0n, straight into a brick wall.  It won’t stop me from trying.  It isn’t right that behavioral health is consider less important that physical health and covered on different terms.  Wish me luck!!!  Who knows, it just might actually work.

Here is the link to to the program if you would like to check it out.  http://www.kued.org/ontheedge/

The video is available online or you can request a DVD copy.  There is a lot of good information available on the site, too.

Best wishes to you all!

Change can be so difficult! October 16, 2010

Again, it’s been way too long since I have posted.  I hope that you are doing well.

Remember my promise to keep this as positive as possible?  Well, that’s the primary reason for not posting.  There has been some regression over the past several weeks and I honestly have not been feeling particularly positive.

New school. New bus. New teachers. New kids. New/untraditional school curriculum. Need I say more?  This is a lot for anyone to take, let alone with child with Asperger’s who does not adapt to change as quickly as many other kids.  Needless to say, Punkin has had some hard days.

The bullying began just the second week into school with bruises on his back.  He told me that the kids hitting him were laughing so he laughed.  He really believed that they were trying to be his friends.  We were offered a big time educational opportunity here.  Those that hurt you are NOT your friends.  Their laughter is not what you think, Punkin. Crushing to him, but necessary to understand the difference.

Third week began with kids (different ones) trying to poke him with a safety pin.  When he told me, it seemed so far out there that I didn’t respond right away.  However, when another child said, “Yeah, people are mean to [Punkin] on the bus.  They are always trying to hurt him and yesterday they tried to stab him with a pin.”  The following day I walked up to him on the playground to find him being pelted with rocks and dirt.

The kiddo has developed a throat-clearing tic that we hope is temporary.  In addition, he has developed and new hobby.  He loves to help clean the black scuffmarks off of the floors at school.  That has become somewhat of an incentive in some of his classes.  He feels like he’s doing something important and helpful to the school.

The good news is that we have started to participate in an Autism Social Skills group.  He goes once a week and is taught things that most of us don’t even think about.  He is learning to read people’s faces.  He’s learning to better understand cues from voice inflection and body language.  These kids are absolutely amazing!  The individuals conducting the group sessions are incredibly compassionate and professional.  I’m meeting some incredible parents who have a common bond.

We’re settling in and keeping ourselves occupied with strategies to make things better.  We’re working diligently with the Special Education Department and school administrators to be sure that he’s adjusting better and getting some education in while he’s there. Each week is a little better than the last.

Here’s where the reflection of the positive aspects come into play today.

• My son is incredibly resilient in ways that I never would have imagined.  Who in the world would happily jump on the bus and endure what he has had to endure?  He doesn’t shed a tear.  He doesn’t complain.  I guess it could be considered a fault because he isn’t communicating exactly what is going on, but he is trying everyday for things to be better.  He’s not hiding in bed and refusing to go to school.  He likes his teachers and knows that they are there to support him.  He is teaching me so much!
• Without Punkin’s diagnoses, I would not be who I am today.  His situation has reinforced my compassion for others.  It has given me an opportunity to grow intellectually.  I have been given tools that help me talk and listen to my son in a very constructive way.  I wish I had had those skills for his older brother!
• I am part of an amazing “club.”  This club doesn’t judge.  They don’t see the faults.  I see these amazing children of ours maneuver the world in a very unique way and their parents trying so hard to do their best.  We all look exhausted, sometimes defeated, but the love in that room is AMAZING.  The way that these children teach me to be a stronger person is an incredible gift.

I hope all is well with you and your families.   Thanks so much for listening and God bless you.

Love,

Momma Punkin

BACK TO SCHOOL September 4, 2010

It was the first day of second grade this week.  Wow!  It’s been a quick summer.  Our family was very involved in getting a new charter school up and going.  We liked the environment as it was proposed in the charter and believe that they are able to provide a flexible learning style for kids.

Although we were super excited to see the school year start, there has been some apprehension.  Adjusting to change isn’t one of Punkin’s strongest traits.  We were grateful to touch bases with a few of his teachers and let him get a sense of the lay out of the school just before it started.  But, he’s still nervous and complains about a stomachache and headache everyday so far.  He’s picking his poor thumbs raw from the nervous energy.  He’ll get through it and we were prepared for some transition issues.

I had two emotional “mommy” moments the day of the open house – watching them put up the letters of the school name on the building and watching Punkin’s mentor teacher sit down next to him and talk for at least five minutes about how she is there to help him and she understands that life gets overwhelming for him.  She promised she would be there for him.  The school guidance counselor did the same.  The special education teachers did it, too.  Yes, I said “teacherS.”  This school has two!  Tears.  Seriously, tears.  And, dang it, now they are coming again!

He was excited to get dressed in his uniform and wait for the bus.  He needed a little help going up the stairs alone.  But, he did it!  His wave as he drove past made me feel so much better.  He came home excited, but ready for the X-Box.  He’s definitely a boy!

Some of the other tendencies are coming out – he’s not sleeping as well, he has some meltdowns that seem irrational, and he’s sure that people aren’t sitting next to him on the bus because they don’t like him.  We’re working on the bus issue by trying to remind him that everyone is new to the school and not sure where they fit in yet.  Things will get easier.  I will have to watch the “funny kid” who likes to slap him on the back, though.  Punkin says he doesn’t mind, but I do!  The other things will resolve over time and with an established schedule.

Punkin had some great friends and experiences at his last school and great sessions with his psychologist that have prepared him to make this change with some confidence.  We are looking at this change as giving us hope with more access to additional services, a better schedule, and the ability to play with friends in the afternoons.  We are so grateful to have understanding employers that allow us to do this for Punkin.  We’re proud of him and looking forward to seeing him grow another year older.

Impulsivity and Lack of Understanding July 26, 2010

Well, Punkin’s world of ADHD and Asperger’s truly converged in a scary way.  ADHD brings impulsivity.  Asperger’s brings the lack of understanding as to why we were so concerned about his actions.

Here’s the story:

We were with my mom and my siblings and their families at the state amusement park.  We enjoyed the day and all in all, Punkin was on his best behavior.  He and I rode the airplane ride together.  I rode in one car and opposite of me, you could hear Punkin squealing with the delight while the planes spun higher and he adjusted the sail to spin it more and more.  I was enjoying the ride, eyes closed, feeling the wind and listening to him laugh.  As the ride slowly stopped moving, I continued with my thoughts.  The impulsivity got us at this point.  I heard a bit of a commotion and turned to the inside of the ride and there was my son on the ground in the middle of the ride running towards me.  The look of sheer joy and victory was on his face.  I screamed for him to stay where he was as the ride continued to circle around him.  By now, people are yelling and he is in a ball on the ground.  When the ride finally stopped, I called him over to me and asked him why he did it.  His response was, “I thought it would be fun to jump out while the ride was moving.”

The helplessness that we have felt on many occasions was back.  I looked over to Papa Punkin and he was helpless as well outside the fence of the ride.  I looked at the ride operator who looked mad and confused.  The cousins watching responded with, “Did you see what he just did?  That was cool!”  Through it all, Punkin, just couldn’t understand why people were so “mad” and yelling at him.

I talked to him about the way we were scared that he would get hurt.  I told him that acting that way could mean that they won’t let him ride on any rides.  Papa took him aside and had a talk as well.  He told him about setting an example for others and how his actions sent the wrong message to his cousins.

The teaching moment for Punkin was that there are rules of the rides and it is not acceptable to jump from something that is moving.  The teaching moment for me is that I can’t let my guard down.  I have to watch and be ready for the unexpected.  I also need to be sure that he knows different emotional states appropriately.

I’m glad he was okay and that we continued to enjoy a great day with the family.  My little guy was great at taking turns, he was much more adventurous than ever, and watching him respond to this lesson was amazing.  He didn’t have any meltdowns and used two words sincerely, “I’m sorry.”

LITERALLY!!! July 14, 2010

“Q: Why aren’t ghosts good liars?

A: You can see right through them.”

Seems simple enough, right?  Punkin was reading a joke book to me while we were in the car and I had to explain many of the jokes to him because he didn’t understand the meanings.  The concept of the meaning of seeing right through someone was more difficult to explain than I could have imagined since he has a very difficult time understanding certain jokes and common sayings.

“I’m so hungry I could eat a horse.” (Mom, nobody could eat a horse.  Why would they even try?)

While talking to his psychologist today, we were discussing how well he is doing.  He has been able to determine when he is anxious and needs to walk away from a situation.  He asked for time to collect himself and we’ve been giving it to him.  It’samazing!!!  The psychologist told him that she was proud of him.  She couldn’t believe how far we’ve come in six months.  She said that in the past he was likely to blow up rather than walk away.  The look on his face was a combination of terror and confusion.  He immediately questioned what she meant by “blowing up.”  His mind works in a way that he had believed for a split second that there must be a grenade in his body.  He questioned, “You mean I could literally blow up?”  She had to back up and rephrase by saying “meltdown.”  He was so relieved.

“There’s more than one way to skin a cat.” (Mom, why would someone skin a cat?)

It’s a trait of Asperger’s that can bring some humor to the situation.  However, we are learning that we need to explain these sayings and clear up any misunderstanding of terms and language as quickly as we can.  We want him to be able to act appropriately and not get lost in conversations.  It’s a little tricky because we have so many of these sayings in our culture.  I challenge you all to really look at some of our sayings and see if you can picture them from a different perspective.  It’s how those with Asperger’s see the world.  It makes it quite an interesting place.

Rocks Rule!!! July 9, 2010

One of the aspects of Asperger’s that is frustrating, yet can be fostered in a positive direction, is the obsession with a certain topic (or “topics”).  While Punkin has many interests where he turns into an encyclopedia about the facts: natural disasters, Bakugan, and Star Wars, he has never faltered in his love for ROCKS.  Anywhere we go, a few stowaways find their way into his pockets.  Unfortunately, they aren’t always discovered until the unmistakable clanging coming from the laundry room.

My grandfather always had a knack for finding beautiful rocks and even started his own jewelry making enterprise.  While cleaning out the house, Punkin has been in heaven.  He came home with a wonderful collection of some tiger eye that he is holding close by.

We found him a few books on rocks and geology that he has already starting reading.  I figure if he’s interested, we’ll keep it that way.  Maybe someday we’ll all see him on the Discovery Channel teaching us about volcanoes, dinosaur history, or the Grand Canyon!  Maybe he’ll follow in Grandpa-Great’s footsteps and make some great jewelry.  Either way, it will be fun to see where he takes this interest.

Alphabet Soup July 3, 2010

NAMI, CHADD, IEP, AD/HD,

WCJ, WISC, Oh My!!!!

I’ve been thinking about all of the people and groups that have helped us in the past year or so since we found out about Punkin’s diagnoses.  It’s reassuring that there are so many people out there who are willing to help others.  I thought I’d pass these resources along to you which is where “Alphabet Soup” come from.  They all have their role in the treatment of our son’s conditions.  I am grateful for what they do and hope to repay them somehow in the future.

All of the elements of this new world we live come with a new vocabulary and acronyms galore!  I’m sharing those groups that have helped me since Day 1 in the process of finding the best care and support for us as a family and for Punkin as he progresses through life.  This is just a start because there are too many for one post.  You’ll also find the links to their websites on the right of this page.  See “Parent Resources.”

NAMI – National Alliance on Mental Illness:

This was my first exposure to our “new normal.”   They had a NAMI Basics class that helped me understand the overall aspects of mental illness, its treatment, and the resources available.  It is held for six weeks, two hours per meeting.  A group of parents sitting together and finding out they are not alone was incredible.  Your state is likely involved with NAMI already and you can find local chapter information on the NAMI main website.  I’m scheduled to certify as a trainer in August.  I’m thrilled that I have the opportunity to help others.

UPC – Utah Parent Center:

The Utah Parent Center was one of my next phone calls.  This is staffed by parents who have been through the same challenges and are there to share their experiences.   They have been particularly helpful by sharing their expertise in the school setting – the testing, IEPs, and Section 504s.  Oh, and they’ve been very helpful in explaining what all those acronyms mean!   If you aren’t in Utah, you should try searching for a Parent Center in your state or consider calling them to see if they can refer you to the Center in your area.

CHADD – Children and Adults with Attention Deficit/Hyperactivity Disorder:

CHADD has been helpful in providing information and support for the ADHD diagnosis.  They also have local chapters that you can identify by visiting their website.  I just finished their Parent-2-Parent class.  It was taught by a mother of three children who have ADHD.  It was seven weeks of really good information that helped me understand ADHD so much more than I had.  The class had two other couples and we had a great time sharing our stories and crying together.

LDA – Learning Disability Association:

LDA is a national organization whose mission is to help individuals with learning disabilities of every kind.  I attended theirannual conference and learned so much about the basics of certain learning disabilities and ways to ensure that I understand the testing process in the school system.  They had an amazing speaker who spoke about his life with ADHD and how he was able to get his Ph.D. at Brown University.  It really helps to see the success stories!

Again, I have added these links to the right (“Parent Resources”) and will add more as they enter my world.  If you know of any, please feel free to share.  I’m hoping to learn from you, too!

Time for Goodbyes July 1, 2010

It’s definitely been a while since my last post.  The Punkin family has been BUSY with regular events of the day, but we had a major life event.

Unfortunately, we had to say goodbye to Grandma-Great last weekend.  She was 92 years old and really lived the life I admire and want to emulate.   She experienced life and taught me so much love, forgiveness, and patience.  She loved her grandchildren and great-grandchildren as much as life itself.

I worried so much about how Punkin was going to take it.  One of his biggest fears that we are working through is the worry of death.  I know that any kid at his age (7) would struggle losing someone close to them and understanding the magnitude of the loss so I’m not sure how “different” he really is with regard to this.  However, since he has struggled with depression to the point where he had talked in detail about killing himself, I do worry probably a bit more than I did when Brother Punkin went through the loss of Grandpa-Great at a slightly older age than Punkin is now.

Thank goodness for his psychologist.  She talked to him a bit about it before the funeral and advised us to let him take the lead in how he wanted to handle it.  She really cautioned us about him seeing her in the casket, but otherwise felt that going through the funeral services would be good for him.

He sat in the corner in the foyer with his Nintendo DS most of the time.  Right before the family prayer and closing of the casket, he wanted to come in.  He still didn’t look at her, but he was there with our family.  He hugged me and let me know he loved me as tears streamed down my face.

I was honored to be a speaker for the services.  Just before I went to the podium, he started getting emotional and scared.  He expressed that how he was feeling with his words and told me that he was feeling extremely sad and needed to leave the room.  He stayed for my part and then Daddy helped in him the foyer of the church.  He experienced as much as he could, recognized his limits, and we were sure his needs were met.  I can’t tell you how much I appreciated Daddy for his support and allowing me to take care of things and be the loving support to Punkin that I wasn’t able to be at the time.

The experience showed me how far we’ve come as a family.  In years past, we may have been more apt to tell him he had to sit still, be quiet, and couldn’t leave the room.  However, knowing his limitations and feeling safe to express them avoided the inevitable meltdown that we would have had before.  The death of my grandmother was a blessing because she is no longer suffering.  However, it didn’t take away the pain of saying goodbye to the most gracious person I’ve ever known.  Having coping tools available for Punkin and ourselves made the difference in enjoying the celebration of her life rather than enduring the pain combined with the stress of having a child acting out.

This is dedicated to Grandma-Great.  Without her influence of support, love, inspiration, and confidence I would not be the person I am today.  I only hope that I have some of her qualities in my toolbox and can share with everyone around me.

Love, Momma Punkin