Sorry, but I hate it

It's a beautiful sunny day outside.  To any other area most likely nice, but not quite the big deal it is here in Syracuse.  After all it was just -7° just two days ago and now it's in the 40s. This, my folks, is a  big deal.

Zach cried and screamed for almost 60 minutes straight this afternoon. It was a "good day" at school.  He likewise had a "good day" at the doctors where he goes Monday through Friday at a clinic immediately after school. And then he came home.

A "good day" - a good chunk of us special needs parents probably cringe at these words.  They are vague and  yet sound so positive, don't they?  Most of us figure out sooner or later that what they meant is not that our child progressed or excelled at school, but rather, they didn't give the teacher a hard time.  Sometimes, a good teacher who is conscientious about their job will actually mean "good day" from the perspective of the child and mean, despite any behaviors, the child rose to some challenges and got through them.  Gauging what a teacher means by saying "good day"is part of the lovely complex nature of raising a child with autism.

We are lucky that this year, for the first time, we get a lot more communication about Zach's day.  I will never take that for granted.  We have seen noticeable progress with Zach - the kind of progress that we don't have to take data for because it is obvious.   Yet, for some things, we still need that information.  Zach's aid is such a blessing.

There is a contingent of those who have autism, most likely Aspergers, who are adamant about not calling autism something that is medical.  They are offended that people grieve continually for their autistic children.  They call parents who attempt to treat their children's symptoms using alternative medicine or behavioral techniques abusive.   I struggle with accepting all these group's notions.  Indeed, autism is a spectrum - variant from person to person.  A snowflake disorder, where no two individuals present exactly the same symptoms.  There are those who can more seamlessly meld into the rest of society - maybe not altogether unnoticeable, but well enough that the general population make few waves.  Then there are those who people would rather not see, try to ignore, and will evoke commentary on the order of: "should be sent some where". 

 They are all part of the same overarching diagnosis, yet so different with needs so varied.  One autism activist goes as far as to say that:

It is not possible to separate the person from the autism.

And:

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

From Jim Sinclair, Don't Mourn for Us, "Our Voice," the newsletter of  Autism Network International, Volume 1, Number 3, 1993

 I am afraid that Mr. Sinclair and I are going to have to agree to disagree on this one.  My son is way more than autism.  I also am wholeheartedly glad to have him in my life.   Perhaps some of this derives from the fact that Zach for the first approximate year and a half of life, did not show signs of any autism.  In fact, he lost his skills - his eye contact, language, pretend play.  He regressed into his autism - as roughly 1/3 of those diagnosed do.  
........
My son began crying over 2 weeks ago, gesturing to his head when asked where it hurts and what hurts.  Yes, we have run programs to teach him to identify body parts and also to give him mechanisms and manipulatives to communicate his needs with.  Not everything has a special education solution.  His inconsolable crying for hours at a time, especially when in the middle of the night, has to be one of the hardest features of raising him.  He is suffering, and his autism plays a huge part in not alleviating if not directly causing his suffering.  When there is suffering, there is pain.  When there is pain, we attempt to alleviate it using a scientific/medical model.  We spent the better part of 2 days addressing the source of his pain with doctors and dentists.  The answer? Unknown.  The decisions? Treat ear infection, swimmers ear, and possible abscess tooth. (It could also be something neurological or a migraine - but how could we know?) 

Did I mention how he cried at these appointments? Big hot steamy tears off his sweet face as he at times flailed, other times gestured for me to hold him, and yet at others grasped my hands.  Witnessing his agony and torment?  Gut-wrenching, and therefore exhausting. One literally has to learn to not respond the natural way a parent would in order to do the right thing - and what is the right thing? When there are no answers, the only consolation I can give him is to be there, and I can not let my stress show.  That often means checking out on my own emotions.  Throughout sometimes hours of this, in order to let him know that I care, and that I am there for him, if he happens to figure out what he needs and can relay that information to me, I am there to respond.  Otherwise, he is not alone and that is all that can be done for the moment, the best there is. Oh - communication issues due to autism.  Torture.

Yes, it is at these times that I truly hate autism.  This is not the same as the grief one feels because of "shattered dreams" this is knowing this disorder has so much consequence to HIM, not me. For one to tell me that my care for my child and not wanting a child to suffer makes me in denial of loving him because I don't acknowledge him as autistic first, well, I take issue with that.  I will always love my son as the human he is, filled with fear, desire, pain, and joy like his neurotypical counterparts. 

If you do not suffer because of your autism, than I suggest that you not tell me that my son does not.  Projecting your experience with it is a natural human reaction - us humans are notorious for this lack of perspective even when not autistic.  But there are other people with autism who will talk about the suffering - the pain, the need to strike at themselves, the alienation, the exhaustion.  Not all believe it is just some alien form of being human, nor do they view it as a personality trait.  It has manifested itself as something much more intolerant, requiring support way more than understanding.  For these people, we must look to ways to alleviate their suffering.

And then there is the Catch-22.  We are scheduled to have a weekend away - not far, just a 20 minute drive where there will be no children, or dogs, or autism, or doctors, or phones ringing off the hook.  Steve and I are to connect again, and revitalize.  That means it goes against my being there for Zach during a particular time of need.  This has been scheduled for months.  It tooks months to find someone willing to stay with our kids.   

I learned a long time ago, that one of the recurring troubles in my life was involving timing, and ours usually stinks.  So for the first time in 6 years, Steve and I were to get away for an overnight and not be selfish, but to do self care, and a dilemma is faced again. Frickin autism.

 

I have Faith, In my daughter especially

On Family, and Our Beautiful Daughter:

As Valentine’s Day approached and I double checked the family calendars for the various events we were scheduled for, I realized that I had double booked our family for one evening. (Not an unlikely occurrence as I am getting older, and stress and sleep deprivation has taken their toll.)  Sophia was supposed to attend a Father/Daughter Masquerade Ball that evening for the Girl Scouts.   When I realized my mistake, I went back and forth of what to do.  Many siblings of special needs children often feel that most of their parents’ time and attention is given to the child with special needs.  This is no different in our case, than in probably many other families.  We are aware of the issue, and try to purposely take time with our daughter, spending one on one time with her.  This dance was to be that time with her father.

I spoke with the husband, and our initial reaction was to cancel our outing at Eastern Hills. Easter Hills, a Bible church located on the opposite side of town, was sponsoring a “night out” for couples with children with special needs and their siblings. A fantastic opportunity to get care for BOTH the kids, in a fun atmosphere (they set it up like a carnival, including carnival games).

At some point, I prayed on this, and mentioned it again to my husband.  Yes, I am a woman of faith, I have an above average IQ, have studied graduate level science, know the history of religion and persecution (in both directions I might add), am a critical thinker and a skeptic, but also possess an intuitive ability that has helped me to make good decisions as could be shown statistically.  Call me crazy, but do not call me ignorant.  We decided to tell Sophia what had happened, and let her decide what to do.

2013 Father Daughter Dance

We sat Sophia down, explained that Mom had double booked, and wanted to know what she wanted to do.  While she expressed that she did want to go to the dance, I saw her become somewhat pensive.  Then she said: “Mom, Dad, you never get time to go out on a date.  I think you should go.”  And that was that.  We questioned her many times to make sure this truly was her decision, and indeed, she was unwavering.  

Why this surprised me in retrospect, I am not sure.  Indeed I have seen her countless times at this point be very selfless with her brother.  In fact, just recently, in an attempt to help Steve and I get more rest, we have attempted to get Zach to sleep the whole night in his whole bed, even upon waking.  Zach picked up on this rather quickly, and instead of waking us and attempting to hop into bed with us, he actually has hopped into bed with his ever-loving sister.  Yes, he has awakened her, and yes she has complained and we had to take him out of her room.  But one day, she actually said after a restless night with her brother, “I hope you got some sleep Mom.”  

The night of our date night, I was nervous.  Dropping off any child to people relatively unknown can make any a mother weak in the knees, but a special needs mother, even more so.  But also in the back of my mind was what my daughter had given up for us.  Would she have a good time? Had we guilted  her into this decision?

When we arrived to the chaos of picking up our children at the end of the night, how happy we were to find our daughter playing, and in fact, not wanting to go.  Both of our children were so happy.  The ride home, Sophia told us of the wonderful evening she had.  There is a saying that a mother is only as happy as her saddest child. Well, for that evening, I can say that my family and I were as happy as anyone could be. It was a gift given to us by not the scientific community, but by people of faith.

I saw many families who I know at the event, and I know how much it meant to all of us to have this evening.  

I also am incredibly proud and humbled to be raising a most amazing daughter. 

Can She Reach Her 50 Boxes Donated to Local Food Pantry Goal?

Can you help Sophie reach her goal?
She has 35 boxes donated to local food pantries - can you help her reach the goal of 50?

That's just 15 more to go!

She also has reached 167 of her goal of 250 boxes total sold. 

That's 83 more to go....

Please let us know if  you can help her out with her cause!

It's That Time Again: Girl Scout Cookies for Sale!

Sophia is making a request...
She is selling Girl Scout cookies - if you would like to place an order - please send an email leanne.morphet@gmail.com and tell me how many of which type you would like. We are willing to ship - but have to pay costs to do so out of pocket - so please consider that when purchasing. (Please note cookies are $4/box)

Sophia has a goal...

Last year Sophie (and the rest of us!) were overwhelmed with the generosity of our friends and family.  Not just because she met her goal of 250 boxes sold - but we were surprised to have 42 boxes to donate to a local food pantry.  Sophie is hoping to top that number of donated boxes - listen to her message above.... 

Sophie with her Donations in 2013 to the St. Joe's Food Pantry - Can We Top This?

One Donation Two Causes
Also - if you don't want the cookies - but want to donate anyhow, we are taking cookie orders and delivering them to a local food bank for distribution - help two causes at once! Please make note when ordering.

Allergies/Intolerances/Nutrition Info
If you need nutritional and allergen information about the cookies that can be found by clicking on each cookie above.  

• There are several nut-free (without peanuts or tree nuts) cookies: Trefoils, Thank U Berry Munch and Thin Mints.
• Little Brownie offers 8 cookie varieties - all without high fructose corn syrup.  
• There are no hydrogenated oils in Trefoils, Do-si-dos, Dulce de Leche, Thank U Berry Munch and Savannah Smiles.

You Matter More Than You Think

We had Zach's 7th birthday party a little late this year.  Let's just say things  never stop around here and call it good for today's post.

So we invited his classmates and some old friends to a local bounce house to celebrate.

Zach had some difficulty - and went through periods of running and jumping, to periods of finding a small confined space to compress himself into and watch the others.  It was interesting to mix those with special needs with those typical kids - and even more interesting to watch the families and their reactions to the situation.

I have a tendency to have extreme alternating feelings of  people in general, one day thinking they are all heartless and untrustworthy and the next finding them warm and even inspiring.  I feel I never just tolerate them as I know others do, it's almost always one extreme or the other.  When I look at my son and his behavior at the birthday party, I have to laugh and say "the apple doesn't fall far from the tree now, does it?"  I have been plagued with social anxiety since I was a kid. I see him engaged and then self isolated, and I get that.

My anxieties about social situations have certainly impacted my relationship and treatment of Zach.  I have had to get over some of my baggage in order to advocate for him. (I would like to add that I certainly still have a ways to go.) When I deal with people regarding my son that are not "in the field", and even sometimes with those who are, I expect the worst.  I trust no one.  I feel that it is only my love that accepts who he is.  I question whether the human condition is truly capable of more than just tolerating my son.  Are there really those who can actually engage with him, interact with him, value him, be inspired by him?

We live in a society that defines success by achievements of superlatives.  Those who do the unthinkable, the unimaginable, who break records, who produce results. The winners.  There are stories of talent and determination, combined with hard work.  Certainly admirable qualities. But I am often confused at how one man's dedication to himself and his craft is often construed as heroic.  I think these ideas diminish the potential in the rest of us who are on other paths, and by doing so, we often times don't pursue to be the successes we were meant to be.

As my previous story indicates, I think that every one of us matters more than we realize. That's because I truly feel that every one of us has the ability to make a difference in someone else's life - that goes beyond our obligations and our own families - to extend ourselves, take a risk, do something we are unsure of or are comfortable with, for the sake of someone with whom we are not expecting anything back in return.

The thing I love about the story, is the relationship these not so disparate ordinary families make, but the fact that one family's act will now connect to them to another family for as much time as they have on this Earth. They didn't have to do it; they were under no legal requirement, nor religious imperatives, nor moral directive, nor did any logic prevail that this would offer them some equivalent in return for their efforts.  It was hard, even unfair, but yet it was good.  They made a huge difference in someone's life, and most when they watch that video will feel sadness and joy at the same time.  That complex feeling, at odds with itself but simultaneous, culminates into what I feel is the definition of life.

So here I stand, far from the winner's circle with my dear son, Zach.  At age 7, I have no idea what his future holds.  It could be easy to say that he will never achieve what others will, so why try?  Or I could "delude"myself that I have a genius on my hands and strive to have a best-selling novel as I chronicle our journey as others have done. There are more and more books about non-verbal children who suddenly find their way into the world with the rest of us as they learn to communicate.  They have offered those of us with non-verbal children hope, which the reality of time could dash.  If my son never enters the world of communicators, does that mean he has less value?  Does that mean he is not a success because he never fails to overcome his obstacles to be more like the rest of us?

Back to Zach's birthday party we go:
Mother of Gabriellat to me at Zach's birthday party: "My daughter was insistent that we go to this party. I told her that we were going to get invited 20 parties, and she said that this is the one she wanted to go to. "

When Mom inquired to her daughter as to why she HAD to go to Zach's party over anyone else's,

Gabriella stated:  "We have to go!  Zach is special!"
Mom then asked why he was special: (not knowing of Zach's diangosis)
Gabriella replied: " Well he has autism.  But he's special because he's my friend."

That mother, looked right at me with tears in her eyes, explaining that her husband was out of work, she was waiting tables at a local restaurant, and that money was tight,  and said:
"Well, I realized we just had to go!"

I told her we asked for no presents, just PRESENCE.  She insisted on a donation to our fundraiser.

Zach's life alone touched another person.  While she told me the story, and I saw the tears well up in her eyes, I was once again in a moment of those feelings of "life", contradictory yet wondrous. Zach's very presence, no actions nor words, had made a difference in that woman's life, and in her daughter's too.  He had a purpose, and they took action - extending themselves to him and to our family by attending a party that they were under no obligation to go to, and more importantly, that some people purposely would avoid.  What they did mattered.  A lot.  Enough that I had to share this simple yet paramount story in our lives with everyone.

The Boys from Michigan who Knew More than Some Men

“Only a life lived for others is a life worthwhile. “ – Albert Einstein

“He who wishes to secure the good of others, has already secured his own.” – Confucius

“An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.”  - Martin Luther King, Jr

“The best way to find yourself is to lose yourself in the service of others.” - Mohandas K. Gandhi:

While the story I am about to share is not about my son, this does exemplify the hopes I have for others - both in them realizing the gifts they have been given should be shared, and that bestowing those gifts on someone else is a gift in itself - as can be seen by the young man's tears at the end of the segment.  He has learned a lesson that others will spend a lifetime and may never experience, regardless of the number of esteemed people who have made this world a better place, and are happy for having done so, have tried to tell us. 

Wide receiver Justice Miller: “He went from being a nobody, to pretty much making everyone’s day” “I went from being someone that mostly cared about myself and my friends to caring about everyone and trying to make everyone’s day in everyone’s life” 

The glory of making a touchdown is amazing – making the opportunity for someone else to experience a touchdown is what life is supposed to be about. 

Mud Bunny: Camp Week Aug 19-23

Look what I found on my side porch this afternoon!  That t-shirt is supposed to be yellow, the sneaks, pink and blue.

My mother, never, ever, would have allowed for me to play in the mud.  Guess I am not her.

This is what a day a Baltimore Woods Nature Camp can get you - a dip in the ol' mud hole.  Sophia was lucky to not have lost her shoes!

Yesterday was frog catching and there is lots of hiking, bird watching and  streams to wade in.

My literal tree hugger could be having no more fun than this summer.  Syracuse rocks the summer camp world!

I wish I could be a kid again!

 

Tree Hugger

 

Tough Chick – Super Hero Environmentalist

 

Future Super Model of Geeks and/or Conservationists

My Girl Sophie – Always Uniquely Her and Always Uniquely Awesome!