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Archive for the ‘Autism Spectrum Disorder’ Category

Beauty – what is the cost to my health?

In the past year, our family has begun to look carefully at what we are putting in and on our bodies for a number of reasons.  With the passing of my sister due to cancer, we are looking at how we can reduce our exposure to toxins and chemicals in our environment that put us at increased risk of cancer.  I have lost some of the most significant women in my life to cancer, and I don’t ever want to add my daughters to that list!  We also are looking for any environmental links that may help relieve some of the symptoms of autism that the kids struggle with.  I have been struggling with health issues for almost 2 years related to a hormone imbalance and endocrine issues, both of which have been linked to exposure to the use of paraben, a preservative used in over 13,000 cosmetic products.

We figured that if there are ways that we can reduce the amount of chemicals we use in our daily lives, that is a good thing.  So we have started in baby steps.  We started with the obvious things, like reading food labels, buying fresh not preserved, etc.  Then we began looking at the things we use in our home on a daily basis.  We started with cleaning products and laundry detergent.  These seemed like big inconveniences to change, and I didn’t really think I would like the results.  But I DID!  It takes less time for me to make a batch of laundry detergent or whip up some air freshener than the trip to the store to buy it.  And then I realized how much money I was saving by not buying a $12 bottle of laundry detergent, $6 bottle of bathroom cleaner, and the $5 bottle of air freshener.  I realized how much less waste we were producing by not replacing the spray bottles of cleaner or gallon jugs of laundry soap.  I also like the results I get from my homemade products better than the store bought.

So then I started researching personal care items.  Boy, have I gotten an education!  One of the most significant exposures to chemicals that we face on a daily basis is our personal care products!  Shampoo, toothpaste, deodorant, cosmetics, nail polish, moisturizers, sunscreen, perfume, and more!  These products are marketed as necessary for daily life.  The average person uses 15 to 25 different products each day that contain at least 200 different chemicals!  And only one percent of the chemicals that are found in our cosmetics are safety-tested ingredients.  We slather, brush, rub, and beautify ourselves with CHEMICALS!  We pour the stuff on our bodies, layer upon layer, increasing our exposure to toxins and preventing our body from releasing toxins, on a daily basis!  Not only are we exposing ourselves to all of these chemicals, we are mixing them to form a cocktail of chemicals.

This is a scary thought.  The thought that the products I love, the perfume I can’t leave the house without, my favorite nail polish color, my beloved shampoo, could all be harmful to me is overwhelming.  Almost every brand of these products on the market today contain harmful chemicals. Everything from Lead in lipsticks to SLS in everything that foams (shampoo, toothpaste, shower gel),  Mercury in Mascara, Propylene Glycol in moisturizers along with DEA, TEA, MEA, PEG, Fluoride, Mineral Oil, Coal Tar, Formaldehyde, Aluminium.   The list goes on and on.  

The European Union recently passed a law banning the use of suspected CMRs —  carcinogens, mutagens or reproductive toxins — in any cosmetics sold in the  25-member EU. The major U.S. cosmetics companies that sell abroad have had to reformulate their products to conform to these guidelines, but most haven’t changed their formulas sold in the U.S.  The FDA does not review the safety of cosmetic ingredients.

So how do you know what to look for?  Marketing of products tends to be misleading.  We buy things that are advertised as natural, hypoallergenic, fragrance-free, or organic, thinking that we are making the right choices.  But it is important to read the ingredient labels.  Below is a list of chemicals that you do NOT want to find listed in the ingredients.

According to the Safe Cosmetics Campaign, avoid the following chemicals in  cosmetics whenever possible:

Butyl acetate, Butylated hydroxytoluene, Coal tar, Cocamide DEA/lauramide DEA, Diazolidinyl urea, Ethyl acetate, Formaldehyde, Parabens (methyl, ethyl, propyl and butyl), Petrolatum, Phthalates, Propylene glycol, Sodium laureth/sodium laurel sulfate, Talc, Toluene, Triethanolamine

We LOVE our pretty things.  It is hard to imagine not wearing make-up, not using nailpolish, not coloring my hair.  There are some things that I don’t anticipate us EVER giving up.  I don’t see any of us as vain, but we do feel better about ourselves when we look pretty.  However, we have decided that we want to be informed about what we are buying and minimize our exposure to chemicals that are known to be harmful.  We are beginning to wean ourselves off of some of the daily chemical cocktails we are pouring onto our bodies.  We are also getting involved in The Campaign for Safe Cosmetics to voice our concern and encourage change in how the cosmetics industry is regulated.

Over the next few months, I invite you to join us in The Beauty Project.  Through The Beauty Project, I will chronicle some of our changes, how we are adjusting to doing without our favorite products, and what we are replacing them with.  We have already experienced some epic fails, but we have also found some new favorite things!  I’m excited about our journey and where this is leading.  I encourage you to make just one simple change today.  You’ll find it’s easier than you thought it would be.

For more info on how to get involved in the The Campaign for Safe Cosmetics, click here!

Soothing the Angry Beast

One of the most challenging and heartbreaking behaviors of Asperger’s that we see in Bass is anger.  It is a part of Asperger’s that frustrates me, scares me, and pisses me off!  For a long time I did not know how to help Bass manage his anger.  But without even knowing I was doing it, I was slowly giving him the tools he needed.  It’s amazing how that happens!

When Bass gets angry, it is like trying to defuse a bomb before it explodes.  I have learned to watch for some of the physical signs that anger is building, but sometimes it just comes out of the blue.  It can be really scary for Bass to have such overpowering emotions, especially when he does not fully comprehend what he is angry about.  It was really scary for me, and for a long time I allowed that fear to control how we dealt with his anger.  Once I took that control back, we all feel more in control!

I talked in an earlier post about fight or flight and the physiological responses of the body.  It was an important piece of the puzzle for me in helping him and the rest of the family to understand how and why this happens.  So I decided to begin the same process in learning to cope with Bass’ anger.

The first is to understand the basic phases of anger and how it plays out in kids on the spectrum.   I will walk through what some of the key things we have learned about what a meltdown looks like for us and some of the tools we use to help as we encounter each phase.

THE TRIGGER ~  In children with ASDs the trigger may be too much stress, getting stuck in a thought pattern, sensory overload, anxiety, the inability to communicate feelings/needs, frustration over social issues, or any combination of these things.

ESCALATION ~ Escalation can go from zero to  60 in a milli-second!  You may not even have time to process what may have triggered it.  You are busy trying to head it off before it reaches crisis phase.  There are times when I am able to step in at this point and help Bass de-escalate – if I can get him distracted or off-course, help him by giving him the words to express his frustration, offer him a snack or a cold drink, give him space and time to use his tools to de-escalate.

Bass sometimes tries to de-escalate with food.  He will head to the kitchen and begin tearing apart the cupboards, looking for something to soothe the angry beast building inside him.  We have worked hard at getting him away from that tendency.  His tendency to gain weight is already high because of his meds.  So we have been trying to educate him on healthy choices every day.  We just don’t even bring the high carb, high sugar foods in the house anymore, because during a rage, these are the things he looks for.  I have found that keeping him nourished throughout the day with small snacks and making sure he stays well hydrated in general makes for a happier Bass!  He is pushed over the edge much quicker if his reserves are low!

But there are also times where no matter what he does or I do, there is no stopping it.

This is DEFINITELY NOT the time to begin arguing or questioning his feelings.  He does not need to be told that he is being irrational or silly.  He needs to be respected and listened to, even when he is being irrational and silly.  To him, whatever has upset him is life and death.  Not validating that is a quick way to escalate the situation!

We also try to eliminate all outside distractions.  When we are home, we ask his sisters to find somewhere else in the house to be.  We try to limit him to a specific area, instead of him flying all around the house.  There are times where he cannot get his thoughts to come out through spoken words.  We encourage him to write down what he needs to say.  We encourage him to listen to music.  We do not put a limit, within reason, on the volume of his music.  This works a lot of times at helping him de-escalate.

If Bass is able to stop the cycle at the Escalation phase, this is the point where we reward him for making good choices.  We verbally thank him for taking a time-out, praise him for keeping his emotions in balance, and find a way to reward it.  The reward can be as simple as suggesting that a hug would be good (we don’t hug him uninvited, but we allow plenty of opportunities for him to hug us), a ride in the car listening to music with either his dad or I, a drive to a local restaurant for some quiet time to sit with coffee and a snack and talk.  We have had some of our best talks and breakthroughs by hanging out at a local restaurant.  It is a safe place for both of us.  Our discussions are civil and heartfelt.  We do not yell or get upset.  We have talked about bullying, middle school, puberty, girls, emotions, life, relationships, family, friends, and so much more.  We also use this tool during the post crisis phase as a way to discuss what Bass is feeling, to help him identify his emotions and learn better ways of managing them.  This has been invaluable time for us and for Bass.  Never underestimate the value of your time in your child’s life.  They listen more than you think they do.  Being able to relay some of my own experiences with bullying, relationships, family, and anger management at his age have helped him to realize that he is NOT alone.  Being able to put myself back in that place and help him understand that I really do realize what he is going through has been invaluable to him and to me.

But, alas, we are not always able to get him to de-escalate!  And then we are in CRISIS MODE…

CRISIS MODE ~ He has fully ramped up.  We clear everyone out!  Meltdown has occurred!

We have provided clear rules of behavior for his rages, ensuring that he does not take his rage out on people.  There is never to be physical violence against another person, and he follows that rule.  He is not allowed online when he is in a rage.  If he wishes to express his feelings, he needs to do it directly with a person, not online.  He is not allowed to destroy property.  He is not allowed to leave the ‘safe zone.’

In the past he has become physical.  He has kicked holes in the wall, broken doors, smashed glass, broken a skateboard in half, turned mattresses off of beds, knocked dressers over.  As he has gotten older, his meltdowns have gotten scarier, for him and us!  He is over 200 pounds and 6 feet tall.  His strength is enhanced by his rage.  As we have learned how to better cope with his anger and help him learn some tools to manage his emotions, we have seen less and less physical destruction.

He has a punching bag in the garage.  He has a kicking bag in the back yard.  He can walk laps around the outside of the house.  He can crank his music.  He can throw eggs at a tree.  He can scream into a pillow.  He can spend some quiet time with his dog.  We have even taken a whole watermelon and allowed him to smash it with a hammer.  It was so much fun and such a mess, that the crisis was quickly averted.

Crisis mode is also the point where fight or flight kicks in for Bass.  We reinforce with him at this point that if he leaves our property, the ‘safe zone,’ we have no choice but to call the police in to assist us.  There has been a time or two after putting this into place where he just cannot pull it together and leaves the ‘safe zone.’  It was really hard the first time for me to call the police, but I did it!  He is crafty when he takes off, and it has taken several hours to locate him at times.  When he is located, he really panics.

It is really important that your local police be educated on Asperger’s or ASD’s, no matter how young your child is.  This is your opportunity to begin that education process, so that when or if you ever need help, the tools are already in place.  Call your local police department and ask for an Emergency Form.  They will give you a form to fill out, providing them with details they would need in case they are called in to assist you.  If you have a younger child or a child who is non-verbal, it is a good idea to create an emergency contact card or bracelet that they carry at all times.  Make sure to list on the card/bracelet that the child is on the spectrum.

There was a time that Bass was out of control after being located by police.  The things he was saying and doing were really just him panicking.  If the police had not been educated, he would have found himself handcuffed and thrown in the back of a squad car.  He would have been institutionalized immediately.  Because our local police department has taken steps needed to educate their staff, they handled the situation with grace and dignity.  They were able to convince Bass that he needed to return home with us.  They were able to talk him down.  They allowed us to call our counselor in to visit with Bass (at midnight) in order to assure his safety, rather than bringing a strange social worker in from the County.  Because they knew us and the situation, they were able to determine that the statements he was making about what awful parents we are were unfounded.  We were able to get their support instead of their suspicion.  They were able to help us help Bass.

RECOVERY ~ It may take longer for kids on the spectrum to recover from a meltdown.  It can seem like forever to reach this point, and even when you get there, you’re walking on pins and needles trying to avoid a new flare-up.  It is so important for Bass to have time alone to recover.  He needs a moment to breathe, to allow his body to recover, his breathing to return to normal, his brain to relax, and for him to realize that he made it through the crisis.

The key is to listen to your child.  Allow them to tell you what they need at this point.  If they don’t want to be touched, don’t touch them.  If they want solitude, allow it.  If they want you to help them settle down, create a soothing routine.  Some of the things that have helped us when Bass was little and with Lulu is running our fingertip over their eyebrow, rubbing their back, reading, music, quiet time outside under a tree, swinging.  It takes some trial and error, but you are the expert on your child.  You will find the ‘thing’ that helps in this phase.  Trust your instincts.

POST CRISIS ~ Think about how you feel after a meltdown with your child.  You are drained, exhausted, relieved its over, feeling a little guilty for what some of your thoughts or reactions may have been, sad that you weren’t able to stop it.  Your child is likely feeling all of this and more.  They are tired, emotionally spent, physically depleted, and feeling a lot of uncertainty and remorse.  It is important to help them begin to replenish their physical energy with a snack and a cold drink. They will need reassurance that you still love them.

At the end of an episode, I always take a small snack and some milk or juice and just set it next to Bass.  I don’t even say anything to him.  I watch how much energy it takes for him to try to stay in control.  And when he’s not able to stay in control, his energy reserves are depleted!  I have found that in order to help him get back on track, replenishing his body is NECESSARY!

I have also found it necessary to reassure him.  The past few rages we have experienced, Bass’ outbursts are hurtful and filled with rage.  His vocabulary has become very ‘colorful’ during his rages.  This devastated me the first time I heard it, because that has NEVER been allowed in our house.  Even the word stupid is a big no-no.  But once the floodgate opened and he realized that those colorful words were a real expression of his anger, they seem to just spew forth.

However, when he is in post-crisis, he really beats himself up over what he has said.  He knows that the things he said aren’t true.  He knows that he would never use those words in daily life.  He knows that the things he says are very hurtful.  And he is so remorseful and disappointed in himself.  We take a moment to reflect on what he could have done or said differently.  We discuss that language and words hurt.  And then we close the topic by reassuring him that there is never anything that he can do or say that will make us stop loving him.  He still beats himself up for a day or two, but he realizes over time that we forgive him and that he needs to forgive himself.

This is a fairly new thing for him, and I am confident that just as we have guided him through the rules of physical violence, we will help him find more constructive ways of dealing with his anger.  I think the next tool we are going to add to our arsenal is that he can spew whatever made-up words he chooses, but he is NOT allowed to swear.  He’s a pretty creative kid, so I’m curious to see what kinds of words he comes up with.

It has helped me tremendously to consciously recognize the stages that Bass’ anger goes through, so that I can help him recognize and become more aware of them.  We have begun to replace some of the angry thoughts with more positive statements that he can repeat to himself.  We have given him tools to help him realize that these feelings are overwhelming, but they aren’t going to last forever.  And probably most importantly, I have stopped being afraid for long enough to take control of the situation so that he feels less out of control!

When you are soothing the angry beast, you can feel lost and alone.  Please know that you are not.  There are many parents out there who are learning right along with you.  Feel free to use the form attached here to begin a ‘Soothing My Angry Beast” book with your child.  Print out sheets as you need them, fill them out together, and create a binder for your child to review.  This can begin to give you both an insight into what some triggers may be, what body cues your child is recognizing as their anger builds, and some of the things that are working at helping them to soothe themselves.

Soothing Angry Beast

Fight or Flight and Asperger’s

I am fascinated by the fight or flight response that Bass has when under a lot of stress.  It has been a scary and oftentimes stressful experience as a parent to know how to begin to deal with the extremes of fight or flight.  It has been helpful to me to learn the basics of why it happens, and then to begin to learn different ways to help Bass cope with those intense feelings.

What does fight or flight look like for Bass?  Well, when faced with a stressful situation, in the past, he has needed a physical release for what is happening.  For awhile, he would just run away.  He would run blindly down the road.  It would take us hours to find him, many times with the assistance of police.  (More on police and Asperger’s in a future post).  We still have that reaction on occasion, but it has gotten much better.  We created other releases that are safe and acceptable.  The rule is that he DOES NOT leave our yard, and in most situations, he can now abide by that.  Other acceptable releases for the fight or flight response in our house include walking laps around the outside of the house, using the punching bag in the garage or the kicking bag in the yard, or listening to music.  When he is using music to cope, we do not put rules on volume, within reason.  If he needs to listen to his music loud to begin to reorient himself, we allow it.

I will make the disclaimer now that I am NOT a professional.  I am just a mom who has found that by learning as much as I can about Asperger’s, I feel less out of control when things get out of control!  I hope that some of the things we have learned are helpful to you, but please don’t take my word as law!  I don’t ever want to have that kind of power!  🙂

So what is fight or flight?  It is a basic human response to a stressful situation.  When confronted with a stressful situation, we are faced with two choices.  We can fight or flee from a threatening situation, or we can fight or flee towards something that is needed.  In many situations, we use a combination of fight and flight to achieve what we need to survive the situation.

The physiological responses of the body in the fight or flight mode can be drastic, ranging from acceleration of the heart and lungs, constriction of blood vessels in parts of the body and dilation of blood vessels to the muscles, dilation of pupils, loss of hearing, tunnel vision, and more!  It is understandable how scary and confusing these physiological responses could be to a young child if they don’t have the ability to pause and reflect on why they are feeling this way.

One of the most important things I learned in order to help Bass when he’s feeling under stress is that there is a moment where the brain pauses to take in information.  Is this a dangerous situation?  Why?  What is my response going to be?  It has taken some practice to get Bass to pause in that moment, to realize that he has a moment to figure out what the intentions are of people around him, to develop a plan, and then to respond to the situation.  This has been a huge part of helping him.  I think it is also important to note that I don’t believe we could ever have gotten to this point without medication to counteract some of those physiological responses and some counseling to begin to help him process information in a new way.

I know that there are many opinions on medications and children.  I want to say that this was an agonizing decision for Jon and I.  We entered into medication only when faced with a dire situation, and then we did so with caution and education!  We honestly probably waited longer than we should have, but it is difficult to accept that your child needs to utilize brain altering chemicals.

We researched every medication that was recommended to us, and we took it SLOWLY!  When we did not like what a psychiatrist was telling us, we were not afraid to say NO!  That brought its own set of issues, but in the end, he is OUR child!  And we also take into account what Bass has to say!  It is, after all, his body!  We entered into medication by informing Bass that medication will in all likelihood be a lifelong need for him.  We educated him on what he was taking and why, what his medications are, what they look like, and what doses he takes.  He can tell you a lot about what and why he takes medicine and what it does for him.

There is new research that is showing a relationship between dopamine abnormalities in the brain and Asperger’s.  Dopamine is a catecholamines neurotransmitter, or brain chemical involved in communication between neurons. Catecholamines are a part of the “fight-or-flight” instinct and also stimulate pleasure pathways in the brain. Elevated levels of dopamine can cause an increase in pleasure-seeking activities, which explains the repetitive behaviors and fixations that are common in Asperger’s.  On the flip side, dopamine levels over long periods of time also decrease, causing irritability and fatigue.

Neuroleptics and antipsychotics may be helpful in controlling some of the symptoms of Asperger’s, because the medications block the dopamine receptors in the brain.  Much more research is needed to understand how and why the brain works the way it does for those with Asperger’s, to help control symptoms that affect their lives.  There is no quick fix or easy answer.  I hope this very basic explanation of what happens in the brain can help you as a parent pause and reflect on what your child is going through in those moments filled with panic or anxiety.  We all feel compassion for what our kids go through on a day to day basis, but in those moments of fight or flight, it has helped me to have some of the information that leads to a full understanding of how their body works and why.  It has helped us make more informed and educated decisions on how we as parents should be helping Bass.  And it has certainly given me more compassion for why he is reacting the way he does and what steps I can take to help him learn better ways of coping.

Here are some links to posters we use in our house.  We have these in our office (where Bass goes to listen to music, on our dining room bulletin board, and hanging on the frig!




The speakingofspeech website has a TON of social stories and visuals for a wide variety of topics, from friends, daily living skills, interrupting, turn-taking, and much, much more!  Great website!  We have found that Bass is a visual learner, and having these posters around are great reminders for all of us!

Puzzle Pieces & Pageantry

While we have discovered that pageantry on a budget is fun and exciting, it is also stressful at times!  So in an effort to ease some of the stress on Queenie, to alleviate some of the worry for Mom, and to allow Dad to leave work for a little while each day, we have been working hard all winter on a new product line for Happy Girl & Co.  The purpose of Happy Girl & Co. is to help Queenie raise the funds she needs to be competitive in this year’s Miss Wisconsin Teen USA pageant in September, to offset the expense of a formal gown, interview outfit, shoes, accessories, make-up and hair, as well as hotel and travel expenses.  All of these expenses add up to a good chunk of change!  In addition to that, Queenie also needs to raise $900 in sponsorship money.

“Why should I care?” you ask.  “What difference does it make to me if Queenie is in this pageant?”

Well, here’s why it matters to me.

Last year, I am proud to say that Queenie placed 6th out of 39 girls in the Teen division in the Finals of the Miss Wisconsin Teen USA pageant.  With that honor, she won a scholarship of $29,000 to Lindenwood University in St. Charles, Missouri.  Queenie also competed in the Spokesmodel Competition.  The Spokesmodel Competition was a combined category with Miss contestants and Teen contestants competing for the same prize.  Out of almost 80 girls, Queenie won!  Her reward for winning is a $5,000 scholarship to the New York Film Academy.  These scholarships will be the difference for her!  The money she earns through competition will allow her to attend college.  It is a tremendous achievement!

Queenie fundraising at our local farmer’s market

Queenie is also passionate about Autism Awareness!  Through her fundraising, she is able to use her poise and grace to educate others about what autism is and how it affects families.  She feels honored to be able to do that.  Queenie is blessed with beauty.  With that beauty comes responsibility.  As much as Queenie would love to ‘win’ the crown to be able to affect change, she realizes that through the power of her beauty, she is able to affect change every day through her words and actions.  That’s why she’s so beautiful!

One of the products that Happy Girl & Co. has created are Puzzle Piece Magnets.  Why puzzle pieces?  Well, autism is often symbolized with the picture of a puzzle piece.  The symbol was first used by the National Autistic Society to show something about autism:  our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in.’  It has since become an international symbol of autism.

Our take on the puzzle piece as it represents autism is a little different!  Autism Spectrum Disorders have been described as a disorder made up of 10 separate puzzles all dumped into one box.  Reserachers are in the process of trying to sort through the box to find where each piece belongs, and to which puzzle.

We believe that instead of using the puzzle piece to represent something that is missing or puzzling, it should be used to show the unique and beautiful characteristics of people on the spectrum.  Separately each piece has its own colors, textures, shape, and size.  The same can be said for each person on the spectrum.  They each have their own special gifts, talents, beauty, and individuality!

It is our privilege as family members, friends, teachers, co-workers, and community members to help children and adults on the spectrum uncover their gifts and create ways for them to share and celebrate their uniqueness!  Queenie hopes to use the Happy Girl Autism Awareness Magnets as a tool to educate others in THAT way!  While she lives with some of the daily challenges that autism brings to families, she has also seen first-hand the beauty of autism and the blessings that autism holds.

So, find us at the Lake Mills Farmer’s Market.  Like Happy Girl & Co. on facebook.  Visit Queenie’s website at www.reachingforthecrown.weebly.com.  Whether you are able to support her through a financial contribution or an encouraging word, I hope you can take something away from getting to know a little bit about her.  She’s on her way to fantastic!

“I believe in pink. I believe that laughing is the best calorie burner. I believe in kissing, kissing a lot. I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles.” ~Audrey Hepburn

Oh, As*!&%perger’s!

Asperger’s Syndrome, a developmental disorder that affects a person’s ability to socialize and communicate effectively with others.  Children with Asperger’s Syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.  Asperger’s syndrome is generally thought to be at the milder end of the autism spectrum. While there is no cure for Asperger’s Syndrome, children can learn how to interact more successfully in social situations (paraphrased from Mayo Clinic.com).

Where to begin? The words, Asperger’s Syndrome, have been a part of our lives now for 3 years.  We knew for a long time that Bass struggled with many things that neurotypical children did not.  We brought things up with his pediatrician from the time he was an infant and were pushed aside as overprotective and worried parents.  But a parent knows things that physicians do not.  In many ways, when we got a diagnosis, those words were a relief to us as parents.  We finally had an answer, a starting point for helping him.  We were able to begin to deal with the information, develop a plan, advocate EFFECTIVELY for him, and the ‘bad parent’ feelings were subdued.  When Lulu Grace began struggling, I felt like we at least knew what we were dealing with this time around.  It didn’t make getting her diagnosis any easier, but we didn’t feel quite so overwhelmed.

Bass and Lulu Grace are amazing gifts, beautiful children full of more compassion than I’ve seen in the pinky finger of most people.  Bass still gives me hugs, just because!  He is SO smart.  Although he struggles with school, he aces standardized tests, scoring in the highest percentiles.  Lulu Grace hates school, but carries a song in her wherever she goes.  She has a great sense of humor and sees things in unique ways.  I cannot imagine our lives without their quirks and cleverness.  On the other hand, our family has struggles that we did not anticipate.  We have had to develop our own mode of operations, to learn that it is important to choose our battles carefully, and develop the ability to say, “We’re not perfect, and that’s okay!”   We have ALL had to learn new coping skills, ways to step out of the situation at hand and not let our emotions take over.

So here’s my secret…  There are days of chaos, where no matter how well we have planned and tried to foresee potential situations, Bass or Lulu Grace just cannot cope.  On these days, I know as a mom that this is the most important time for me to be able to keep my cool.  It is my role on those days to support them, guide them, and give them the tools to begin to create healthy and effective patterns of coping.  Oh, As*!&%perger’s! is the image I get in my head on these tough days.

If you’re an Asperger’s parent, I hope you can identify with the phrase!  I don’t use it because I want to ‘define’ my kids or excuse their behavior.  There are times where something simple becomes a huge obstacle course.  I get so angry to see Bass and Lulu Grace struggle with things that come so naturally to other kids.  I don’t want to take that anger out on those around me (which I have to admit I have been guilty of doing!).  I don’t want to get upset with them for not being able to navigate something that seems easy to me.  So I have decided that on those days, the best thing for me is to break my cardinal rule of always talking like a lady and scream in my head, “Oh, As*!&%perger’s!”  It certainly doesn’t solve anything, but I feel better!  And then life can go on…

Butterflies & Lilacs

Welcome to My Stained Glass Life!  I’m so excited to begin the journey of writing and sharing my life with you all!  Today’s post feels a little bit like the first day of a new job.  You’re putting your best out there, have on your favorite outfit, a manicure, lipstick on.  You are practicing in your head all of the ways you are going to show how awesome you are.  You are so excited to jump into something new, with a stomach full of butterflies.

Well, okay, maybe it’s not like a new job, really.  I’m sitting in my favorite nitey wrapped in a blanket on a Saturday afternoon.  My kids keep interrupting my thoughts and keep trying to sneak a peek at what I’m doing.  I really should put a load of laundry in the washer.  But I’m still all pumped up, so excited to jump into this new part of my life, and I’m full of butterflies.  I just read my About page to my husband, and he was so proud!  He went out and picked me some lilacs, put them in a vase, and set them on the desk next to my laptop.  He gave me a kiss on the cheek and told me he was proud of me.  I guess my About page has made an impact!  You should check it out.  🙂

So what can you expect from my blog?  Well, goals for the next few months are to share some quirky fun food, gardening, and decorating ideas, bring you a few articles I’m writing about bringing out the best in your child with Asperger’s and link to the latest autism research.  Our family’s life can get crazy and is definitely unpredictable.  We will share our mistakes as well as our successes, because our take on life is that the missteps in life add character!  And we certainly are a bunch of characters!