Adventures in Aspergers:  An Unusual Mind, An Exceptional Heart

Autism awareness month is always special for us. I use my business to donate a portion of my proceeds to budding research in the field.  I speak in as many classrooms as teachers in my son's school area able to make time for.  My son serves as an educational platform for so many children to understand autism has no face, no look, no guaranteed identification.  One thing I've noticed, is as you get to know these individuals, the way they view the world leaves them with a childlike innocence well into adulthood. They view the world much more black and white than so many of us do!  They aren't impacted by greed, image, ego, etc. 

We recently found out about a mother who has a son around Jacob's age.  She hadn't gotten as lucky as we had and was struggling to fund the training of her service dog.  She'd had many people offer assistance, even form Go Fund Me accounts and then run off with the money.  So I decided to make this April, Autism Awareness month, a personal journey for both myself and my kids.  We'd always made sure to donate and do what we could for great causes.  But never singled out a family, gotten to know them, and brought my children in on this level.  

When my son heard the boy's story, and saw his pictures, he became overwhelmed. He knows what it's like to need help.  He knows what it's like to feel overwhelmed and alone.  Lauren was with us as well.  She knew what it was like to watch Jacob hurt himself.  Sometimes he still does.  And it scares her, plus she feels the need to protect him.  Learning about this little boy I saw their faces shadow.  And then Jacob spoke up.  "Give him all my money, mama."  Lauren echoed, "mine too, mama."  

The kids had been saving for a long time to purchase themselves desk top computers. They wanted to be able to do homework, play on Think Central, and Jacob wanted desperately to have Minecraft where he could buy expansive mods and change the whole world, recreating the game essentially with a single, inexpensive download.  

They had worked hard for the money they had earned.  They'd cared for pets: cleaned up after them, fed them, watered them, walked the dogs....They had to keep up their grades and exceed their reading goals.. They had to keep their rooms clean and do extra chores around the house:  emptying the dishwasher, loads of laundry, etc.  And they'd each earned about $500. Which thanks to the BX's tax free purchase options, was enough for each of them to get an All In One desktop.  They knew they could pick up their computers the next weekend.  

In an instant, they decided someone else's need was greater.  There was no second thought. No time to weigh options.  Even when I said, "mama is helping them raise money, that's your money."  Jacob's response was, "I can earn more.  He needs a dog to help him more than I need a computer. He can have it all,"  He was so resolute.  No mourning over losing something he wanted. No thinking about anything but another child, like him, who needed help. 

Our dog, Jack, has brought peace to his life.  Has helped him learn to settle.  Has provided him with deep tissue stimulation when he needs it.  He has given Jacob a sense of security when he desperately needed it.  And they are bonded in a way you often read about in books or see in movies.  So Jacob wants that for another boy.  And he and Lauren want to do all they can to help.  Together, they are donating $1000 of the $2500 that was needed to finish the dog training!  And I couldn't be more proud. They demonstrate the pure heart of children and the comroderie of the autism community, even among our tiniest members.

If you'd like to help, the paypal link to DIRECTLY donate to the mother Servicedogforjedison@gmail.com

This gives the funds to the family directly so no one else's hands touch them and can use them.  Excess funds will be donated to other families struggling to meet the financial burdens of paying for service dog training.

World Autism Awareness Day!

Shine the light on the whole family!

It's been a long while since I've posted on this blog!  Some may think I've forgotten it!  But life has certainly become a circus.  The kids are settling into a routine, which in my mind, means the military is going to throw a huge wrench into my life and move us so we have to spend months acclimating Jacob again.  '

He's doing well in school, reading well, and even excited to add cursive to his growing list of accomplishments.  He's taken up taekwondo, played soccer and is constantly asking what he gets to do next.  I can't wait for the day a school can put him on a track team and I can just sit in the stands yelling, "RUN JACOB RUN" in full Forest Gump mode!

Lauren is also settling into her own.  She's learned to become her own identity.  That's something I think is so important for the sibling of a child with autism!  Her life used to be defined by what he wanted. What would he eat?  So he picked restaurants and menus.  What could he handle? So fun trips were cut short.  One thing Andrew and I tried to do this year was give her the autonomy she deserved.  And shes flourishing.  She is a talented artist- taught by a local professional artist named Sharon LaPine of Limelight Studios.  She amazes me daily with her sketching in particular.  She can draw amazingly and I see that going somewhere for her.  She also is still very much the class clown.
Andrew and I often wonder if her big personality developed to try to be noticed among meltdowns and self-harm situations.

Today, on World Autism Day, I want to take the time not only to recognize the children living with autism and how wonderful, bright and kind they are.  But to recognize the toll it takes on the family.  That kind of awareness is overlooked because we love our children! I love my son to death!  I'd do anything for him!  But raising a child on the spectrum is HARD. And it doesn't make you less of a mother, father, sister, brother or grandparent to admit it.  Sometimes we need help!  The divorce rate among couples parenting an autistic child is much higher than the average divorce rate.  Research has found that parents of adolescents who are autistic have PTSD levels that match those of soldiers returning from war according to CNN.  And 30% of mothers who raise autistic children need psychiatric help and medication for depression and anxiety to cope with the day today reality of their lives!  I write this  not to create pity or to make mothers of children with ASD martyrs. But to say if you as a mother need help, you're normal and it's ok.  And if you know a mother who seems to be less social or stressed, offer a helping hand.

No two children diagnosed on the spectrum are exactly the same.  In my immediate family we have four. And all four fall in very different areas on the spectrum.  But all of them are intriguing, hilarious, intelligent, loving and special.  The world will be a different place because they were brought to it.  They are here to teach us about the power of the human mind.  To teach us different ISN'T less.  To remind us of the creativity we've lost as a society and the childlike wonder we skip over in favor of a standardized test.  They are gifts, meant to bring us together in celebration, understanding and empathy.  And that is what Autism Awareness month is all about.  Focus on the able, not on the label.

I read the quotation a while back and it has brought me joy and so I will sign off by sharing it with you today:

"It takes a village to raise a child; but it takes a child with autism to raise the consciousness of a village."

To hear more on a day to day basis about how our life's journey goes, you can follow me on Instagram!  

@thepanhandleprincess

Wings of Fire Review

World Autism Awareness Day- #lightitupblue; How awareness helps children with ASD

Photo: Lynette Sanders Photography: www.lynettesandersphotography.zenfolio.com/blog

When Jacob was two years old, he had his first major meltdown.  He was prone to tantrums and head bashing.  Since I had been a head basher as a child, my mom gave me the advice to let him do it for a bit til he realized it hurt and then he'd never do it again.  That's pretty standard parenting advice for most people.  At the time, we had no clue there was an issue with Jacob, so fed up and wanting it to stop, I acquiesced.  What followed I ended up videotaping for when we took him into the emergency room.  Within a minute, he had broken his own eye socket and chipped 6 teeth.  This is not a story we have ever shared publicly, nor do we share often.  I share it now because I want our friends, family and my readers to understand how serious and scary this condition can be.  After this episode, Jacob's doctor told me he thought he was a child with autism.  I reacted like almost every mother I know when she heard the news.  I cried and swore up and down he was wrong.  My son had broken his own bones, but I was convinced there was nothing wrong with him.  I desperately wanted nothing to be wrong with him.  I ignored every warning sign that confirmed the doctor's diagnosis, until one day, he was three years old and I realized he couldn't hold a piece of silverware.  Ignoring it wasn't making it go away, and it was time to face the problem and do whatever I could to help my child live as normal a life as I could.

My reaction was one almost all women have to an autism diagnosis.  We all have dreams for our children from the moment we find out they're on their way.  We debate different names, trying to figure out which name suits him best.  We make every decision during pregnancy and after as if it could be the one deciding factor on his future!  When a doctor tells you there's something wrong, all those dreams come back into question.  What does this mean?  Who will he be now?  There used to be such a stigma to autism, many mothers do as I did and refuse the diagnosis out of fear by labeling their child, it somehow opens them up to ridicule or judgement.  In reality, that diagnosis is the key to open the door of possibilities.

Photo: Veronica Vinopal Photography

Awareness is so important, not just for society to be conscious of those with ASD around them and know how to act and react.  Awareness helps raise funds for research, and most importantly of all, it shows other moms who will encounter the diagnosis they aren't alone.  I have an amazing support system right now that includes my mother in law, my aunt and several friends!  When Jacob is having a bad day, I am able to handle everything he throws at me because I have someone to vent to.  It feels like a betrayal to complain about your child, especially over something he can't control.  These moms know what it's like to live with a child with autism.  And while we love them with all our hearts, it's exhausting, frustrating and mentally, physically and emotionally draining some days.  One of the reasons I've become so much more open about our lives is because I hope someone who reads this knows I'm here and they aren't alone!  Through an acceptance and awareness concerning ASD, I've learned there's nothing to be ashamed about! My son is DIFFERENT.  NOT LESS.  He's a gift, no matter his abilities.  The willingness of society to recognize ASD and raise awareness helped give me the strength to be more open about our struggles and triumphs.  Hopefully in the future, more and more mothers will be able to skip the fear, and move straight to the "I'm not alone, what do I need to do first?" mindset.

Awareness has also helped raise funds for research and new therapy techniques that have come a long way to improving the lives of those living with ASD.  Jacob had to be taught everything from how to make friends, how to talk to adults, and how to make eye contact.  He had to have strength built up in his torso, shoulders and hands so he would be able to hold a pencil, use scissors or hold silverware.  He had to have feeding therapy because his mouth was so underdeveloped, he would choke on food.  He had trouble chewing tougher foods and would reject them completely.  All these therapies, based on play for children, have been developed to fill the gaps of skill and make life easier for those with ASD.  Jacob has used or is still using occupational therapy, speech, behavior therapy, feeding therapy, physical therapy and even equestrian therapy.  Each one has made his life better, made it easier for him to function, and enabled him to mainstream into an integrated kindergarten classroom.  

Jacob used to be terrified of new situations and new people.  For about a year, he could only talk to new people if he was wearing a full costume.  He felt more secure in a mask and cape and I learned his comfort was more important than mine! SO, we went everywhere with him in head to toe, superhero gear.  I was in target when a woman passing by me said something along the lines of , "There goes another mother raising a future freak because she doesn't want to tell him no."  I remember being devastated and upset.  I wanted to protect Jacob, not open him to ridicule. While most moms will say I should have told her to shove it, I felt like it was better for Jacob, who never noticed her to begin with, to not know it had happened.  Today's society is so much more open and aware of kids like Jacob, I bet I'd be hard pressed to encounter another situation like that!  The openness with which we now discuss what life is like for these kids creates an atmosphere of acceptance and love!  

When it came time for Jacob to start preschool, I was terrified to hand him over to someone else.  We were lucky enough that when we toured schools, we found one that was familiar with autism and welcomed Jacob with open arms, costumes and all.  He was treated as though there was nothing different about his attire and the kids thought it was GREAT they got to go to school with a kid who wore costumes!  Several complained they weren't allowed to wear costumes, Jacob was SO cool!  It turned out the thing that made him unique, made it easier for him to make friends on both sides.  He was more comfortable talking to new people, and the kids thought he was awesome!  Today, he goes to school like every other kid, wearing normal clothes, but I'm thankful, in that time period, there were people who understood and didn't challenge what we needed for him to acclimate.  

For all of you out there today wearing blue, thank you! You're part of the solution!  For those of you who donate money to autism research and treatment, THANK YOU!  You help make possible the therapies that have changed Jacob's life (and the lives of many other kids) for the better!  Every little bit counts!!  When Jacob gets off the school bus today, I'm going to show him the pictures blowing up Facebook of all his friends wearing blue in support of him and all the kids like him!  If you want to post a pic, just hashtag it #lightitupblue or #blueforJacob.  You are also welcome to tag me in any photos for him to see!  Together, one day at a time, we can make the world an easier place for children, adults and families living with autism spectrum disorder.  Until all the pieces fit.

The Blessings of Autism: The Rainbow after the Rain

I had a meeting today with Jacob's teacher.  We do this periodically to discuss Jacob's progress, any issues she's having with him in class and to brainstorm ways to keep him challenged and engaged.  Have I mentioned before how much we love his teacher?  There's a reason she earned a HUGE bath pamper basket from me this Christmas complete with a bottle of wine!  As we were chatting, she was commenting on Jacob's higher level of thinking.  Evidently, this week, the number of the week is 18. So everyone in the class was to write a way of making 18 and turn it in for a morning assignment.  While most kids were drawing 18 circles or apples, Jacob wrote out a word problem.  His sheet said, "I have one dime and eight pennies.  That makes 18 cents."  Lauren is studying money right now, and he's such a sponge for knowledge, we let him watch her currency lesson.  Evidently, it stuck!  It really got me to thinking though how the idiosyncrasies that landed Jacob on the spectrum have also blessed us as well.  SO, this week, I'm going to focus on all the great things in our life brought to us by Jacob's ASD diagnosis!

1.  A SUPER human thirst for knowledge

Jacob is an exceptional learner.  His brain soaks up and recalls information like you wouldn't believe. He taught himself the concept of multiplication when he was four.  Our first clue he was an exceptional learner was when in preschool, he would correct his sister's first grade homework.  He adds in his head, no fingers, even double digit numbers.  His vocabulary is expansive.  Most people who meet Jacob say they love him because he's so tiny and sweet, but he speaks just like any grown adult man would.  He sees the world around him and he is desperate to understand how it works.  When we went to the fair last year, all the other kids were enjoying the rides and Jacob was watching the gears trying to understand how the ride functioned!  He asks how rockets work, why are clouds different shapes, why do birds have to flap wings, but planes are able to fly with straight wings.  I fight every urge to simply reply, "Because that's how God made it" and find the real answer for him.  He trusts me to help him explore the world and Andrew and I take that job very seriously.

Jacob loves learning so much, about everything in life.  His favorite books are non-fictions.  He'll even tell you he knows the difference between fiction and non-fiction and there's no point in reading fiction because it doesn't teach you anything.  Sometimes, we're lucky enough to find learning experiences that allow him to both learn and engage the environment.  We've booked learning experiences for birthday parties and make aquariums and museums a regular part of our vacationing experience.

Jacob challenges me constantly to continue life as a student.  He's always learning, so I have to be as well.  He is one of the most gifted readers in his grade and he reads purely for pleasure.  Often, we'll find him curled up with a book in the corner of his loft bed or the recliner.  It makes me wonder some days what the future holds for him.  Will he be a scientist?  A doctor?  If you ask him, he'll be God or the Flash. He says those are the best jobs in the world.

2.  Jacob is an EXCELLENT character judge.

I've never met a single autistic child who isn't an EXCELLENT judge of character. If you come into my home, and Jacob doesn't like you, you may as well walk right out.  He can tell immediately if you're a good person or not. That being said, trusting you to care for him alone and determining whether or not you're a good person are two different things.  Jacob has a very high requirement for those he trusts to care for him.  While he has a penchant for cute blondes, he picks up little clues in the way people speak and carry themselves.  Although he can't tell me WHY he feels a certain way about a person, he can tell me if he likes them or not and if he's ok being alone with them.  My standards are higher even than his.  BUT I can always gauge new people off Jacob's reaction.  If he speaks to them, we're golden.  If he allows them to touch him, we will love you forever.

Jacob's teacher is an excellent example of this.  The day he started Kindergarten, his teacher welcomed him and it was love at first sight.  She has an uncanny ability I rarely see to calm him when he's starting a meltdown.  She can neutralize most issues for him.  She notices even the slightest stimming activity.  She tells me sometimes he'll call her to his desk to tell her he loves her and wants to hold her hand.  I absolutely love the fact she will stand there holding his hand while watching the rest of the class.  He knew from the moment he met her, she would take care of him.  She loves him almost as much as his mama does. Without a single word, they were partners on the journey.

3.  We have a special relationship

I'm the first to admit, before Jacob's diagnosis, I was a bad mom.  I worked ALL the time. I rarely saw him or Lauren.  I loved my children, but never showed it with my presence.  Jacob's diagnosis rocked my world off its axis.  I was terrified and did the only thing I knew how to do.  My natural instincts kicked in and I became his advocate.  I took him to every doctors appointment and therapy session.  I implemented everything in our home; I changed our diets to see if that would help; and I learned how to handle his meltdowns and diffuse him.  As a result of my efforts, not only did we see an improvement in Jacob's condition, but a relationship blossomed between Jacob and I.  I am the person he trusts most in the world.  I am the one he can not sleep without kissing.  When he's hurt he calls my name.  When he's upset, he looks for me.  This exceptional child. who in all likely hood will one day change the world, thinks I'm the most important person on Earth.  When he looks at me, I can see he trusts me unconditionally, love me: unconditionally.

I've had many friends tell me they're "sorry" when they hear about Jacob.  Many are "sorry" I have to go through this.  Honestly, while raising a child on the autism spectrum isn't easy, we have it better than most.  Jacob is verbal.  He's so high functioning, he'll be able to care for himself someday and live pretty "normal" life.  We have it better than most other ASD moms I know.  But when we have a rough spell and I find myself feeling sorry for myself, I try to think of all the blessings in our lives because of Jacob's autism.  While I wish he would have the life of a normal developing child, maybe that would be easier; I can't be sorry for his condition.  It downplays everything amazing about my son that's linked to the spectrum.  Instead, I'll cherish his idiosyncrasies.  And thank God for opening my eyes, even if it took a diagnosis.  Jacob is the reason I'm proud of the kind of mother I am.  He made me the mother I am.  Jacob is a one of a kind child.  All children are. But to mothers who hear that dreaded diagnosis and see all the rain storm ahead: just know there's a rainbow there too.  I hope you always remember to find it.

The Anatomy of a Meltdown

For those of you unfamiliar with the ASD (autism spectrum disorder) community, a meltdown may look like an epic tantrum to you.  Having lived with Jacob as long as I have, I've become somewhat skilled at picking up the clues we are headed to a meltdown.  I wish I were better at preventing them all together; but that's the thing about a meltdown:  they can't always be prevented.

Meltdowns are usually caused by a stimuli Jacob can't process or handle correctly.  I've seen meltdowns ranging from the echoing sounds of a cafeteria to the smoky air outdoors during scheduled burns.  We've had meltdowns from uncomfortable clothing, tiredness, hunger and even unfamiliar surroundings.  Something as simple as someone looking at him in a way that makes him uncomfortable can cause a total loss of control for Jacob.  While this may seem silly, and trust me, many people have recommended better discipline would solve my problem, for Jacob, these all represent things he doesn't understand how to handle.  The therapists described it to me best as when you're incredibly hungry.  When you're so hungry your head hurts, your vision starts to blur and everything everyone does pisses you off.  Someone simply tapping their foot under a table can be the straw that breaks the camel's back.  We as adults often react in these situations with anger, blowing up and then later having to apologize for our outbursts.  For Jacob, his senses can be so heightened, he finds himself in these same overwhelming conditions more often than usual.  His senses can even be so heightened that his brain interprets these stimuli as painful rather than simply irritating.

Jacob's typical meltdown follows a mostly predictable pattern.  This pattern I've discerned over YEARS of watching meltdowns occur and looking for the early warning signs.  First, he begins what seems like a pointless, repetitive action. Sometimes, this is the stomping of his foot.  Sometimes he'll begin clicking his tongue. I'm not sure if it's the spidey sense of a spectrum mom, but I've also noticed this action is usually accompanied by the twitching of his head, slightly.  From there, the reaction snowballs into self harm for Jacob.  Not all children on the spectrum have meltdowns that culminate in self harm, but many do.  For Jacob, this is usually slamming his head.  When he was only 18 months he broke open his eye socket and broke four of his teeth. Since then, we've gotten better at finding soft places for him to slam his head.  Unfortunately for me, that soft place is usually my chest.   I hold him as tightly as I can and he buries his face either in my chest or if we have access to one, a blanket to shut out sound and light.  He bashes his head against my chest as I rock him tightly and this helps settle him faster.  When this method doesn't work, all we can do is simply put him in a soft place and let him smash his head until he wears himself out or works it out.

Those meltdowns when I have to simply put him in a soft chair or sofa are the hardest for me.  Even though it's painful when he slams his head against my chest, holding him and rocking him gives me the feeling I'm helping- that there's something I can do about it all.  The knowledge I have no control over it is the worst part of all.  As a mother, seeing your child hurting- and as a result willing to hurt themselves and being able to do NOTHING to help is gut wrenching.  During a meltdown, all Jacob's senses are incredibly heightened.  You can't speak, it hurts his ears.  You can't rub his back or legs, it hurts him.  Only when he's calm can he be comforted.  That's one of the ways you can tell a meltdown from a tantrum.  A meltdown isn't fueled by his desire to get something out of me or even to get my attention.  Many times, there's nothing he wants except quiet and calm.

At the same time, I can't imagine what it's like to be Jacob.  When I'm feeling overwhelmed and out of control, I seek the comfort of others.  A hug or conversation can bring me from the brink to peace.  Jacob can't stand any of these during a meltdown.  I can't imagine being physically hurt by the touch of my mother as I felt my lowest.  The emotions of watching a true meltdown and knowing only he can help himself are enough to move me to tears.  I cry almost every time.

He's gotten much better at learning to identify when he's feeling overwhelmed and trying to reduce the stimuli himself.  That's one of the things therapists try to teach him.  He uses accessibility equipment at school so he can be integrated in a regular classroom, but decrease the likelihood of a meltdown.  He has noise canceling headphones that reduce the sound when he's overwhelmed.  A local church recently gifted us with a pair that has volume control which is amazing!  We have to pay out of pocket for any equipment he needs, so I know how expensive all therapy equipment is.  The volume control really made Jacob feel more in the loop, so we're so thankful.  He also uses a weighted lap pad at school and a weighted blanket at night.  The weight puts pressure on his muscles that helps calm him and give him more control.

Overall, Jacob's meltdowns are fewer and further between as he attends more and more therapy.  He learns to self soothe in a variety of stimming activities that help reduce his overall sensory overload. Any repetitive action that can seem odd for a spectrum kid is considered stimming.  For Jacob, his usuals include running in circuits (one of the reasons he's so great at track!), hitting himself in the head with his fists (this one we're trying to stop), chewing the neckline of his shirt, and waving his head around with what we call his silly expression (mouth open, eyes comically wide).  Sometimes, Jacob uses a made up language or regresses to a series of grunts and sounds to communicate, rather than use words.  This one surprises most people given his talented grasp of the English language.   All kids are different though.  Some children are ecolalic (repeating the same word and phrase), some shriek, and some are more physical even than Jacob.

While this has been a long post, I hope for a few of you, it helps you understand what's behind an autistic child's meltdowns.  Honestly, one of the most upsetting parts of it for me is that people mistake it for a tantrum or misbehavior.  Even parents and teachers we've interacted with, who know about Jacob's condition, have told me I should discipline better or teach him that's not acceptable behaviors.  While I understand from the outside, it can be hard to tell the difference; I can.  Jacob is genuinely one of the sweetest, well behaved children I know. I don't just say that as his mother; I can provide character witnesses.  He's not perfect, and I've learned to differentiate, disciplining when needed.   What I need from my friends and family, is not to question my parenting.  I do enough doubting of myself.  Strangers especially judge. Sometimes they stare, sometimes they speak.  Even the children in Jacob's class, who love him almost as much as I do, have asked me why he's so weird.  They've asked me why he hits himself or screams when they try to touch him.  I know they are asking out of genuine concern and age appropriate inquisition.  But it still hurts my heart.  Jacob either doesn't notice or doesn't care he's different, but as a mom, you always want your child to have an easy life of fitting in and being liked.  If nothing else, I hope you understand a little more what it's like to be the parent of a spectrum child and how exhausting it can be.  I hope you understand a little more what it's like to be Jacob.  Ultimately, this is the story of his road, his journey.  We're simply along for the ride.

Regression- A Really ROUGH couple of weeks

This week has been a rough week.  It has been emotionally, physically, and mentally exhausting.  Jacob has regressed pretty severely in his progress over the last couple weeks leading to more melt downs, lots of stimming behaviors and even some self harming behaviors.  One of the most difficult parts of a regression in a child with autism is knowing as a parent, there's nothing you can do.  All you can really do is be patient.

The reasons for Jacob's regression are personal, but lately we've experienced a perfect storm of issues- all of which could make a child with autism have outbursts and meltdowns- but together are impacting not only our whole family, but his classroom and those he interacts with daily. This entry I hope will explain what is happening with our family this week and honestly, give me a chance to vent.

I'm so exhausted, I'm having trouble even putting this all into words. I have a desire to be eloquent, but lack the mental capacity for it! So bear with me.  In the past, when Jacob would have a melt down he would frequently resort to self harm.  He slaps himself, bashes his head into walls or door frames, or has thrown his body into walls and other hard surfaces.  Among spectrum children, this is common as it provides a sensory input that in some cases can help calm them.  As a mother, it's particularly scary to see your child engage in these behaviors.  Because of Jacob's sensory integration dysfunction, he also doesn't feel pain like you or I would, so this is more than scary, it's dangerous.  Today, he had a meltdown at school so severe, they asked me to take him home. That's never happened before.

I find myself calling my mother in law, Marcia, almost daily this week.  She has a phD in special education administration, as well as being the mother of a spectrum child as well.  I have had to call her daily to ask if I'm making the right decisions; what can I do different to help him; what should I be doing?  Even beyond advice, I call because I know she will always understand how I feel.

Since it's February, kindergarteners are learning about love.  Jacob had an assignment where he had to write a few sentences about a time he felt loved and read them to the class.  When it was Jacob's turn, his paper was empty.  "I've never felt loved." was his response.  Anyone who knows me knows this child is BEYOND loved.  But for Jacob, love is a fact. I love my mom, my mom loves me.  He literally doesn't understand FEELINGS.  They have to be explained to him.  This lead to the class laughing (they thought he was being silly) and giving him examples to use, "when your mom tucks you in at night!  when your mom kisses you!  when your mom makes your favorite meal"  Jacob just started screaming and put on his noise canceling headphones. For him, those are things moms do. How is that a feeling of love?  His teacher had to give him time to settle and then sat him down and explained feeling love is feeling happy when someone you love does something for you that makes you happy.  After that, Jacob was fine!  He wrote about when we make picnic baskets and eat in the grass on Tuesdays!  But let me say, as a mom, having a teacher tell you your son told an entire class he's never felt loved....it broke my heart in two.

This week has been filled with head banging, crying (from both of us) and lots of stress.  But I try to remind myself how lucky I am. This is a period of regression.  Jacob will eventually work through what's bothering him and get back on track, progressing towards more socially acceptable behaviors.  SO many mothers live their day to day lives like this.  I know some mothers of autistic children who have it far worse than we do even in this regression period.  That doesn't make it easy for us now, but it's a good perspective.  I also like to remind myself that Jacob is so loved that even in a school where he's having issues, children rally around him and protect him. When he had an episode on the track today, literally dozens of children surrounded him trying to console him and make him stop hurting himself.  They encircled him telling him how much they love him and want him to be happy. And although that tends to make his meltdowns worse, it really illustrates to me how accepted and loved he is.

Amongst this difficult week, there is silver lining in the clouds.  He is an exceptional child who is loved by so many more than just me.  If it takes a village to raise a child, I know I'm not alone. Thank you to all of you who have been understanding this week.  I've been stressed, angry and sad.  But as I support him, you support me.  And I appreciate it more than you can imagine.