Sophia' Sentiments # 376

While talking to her girlfriend about her chameleons who have been fighting...

Sophia: "Sometimes life is tough."

Party Invitations

Zach received his 1st invitation to a birthday party from a typical classmate this year. He will go, I will be there for support, and it will be great! This is an example of what those with typical kids can do to make the day of a special needs parent and their child. :) Another lucky duck moment brought to you by the Morphets.

All year I have wondered why he hasn't received one single invitation: Did they know he had special needs and didn't invite him because of it?  Were the teachers not putting the invitations in his backpack? Either of these scenarios stings a bit, but I sort of understand why parents might make this choice,too - they are scared because they have no experience with special needs. I know before Zach I would have been scared too.  But one walk into Zach's school to drop him off says it all - things I wish people could observe about their kids - these kids go out of their way to greet him.  "Hi, Zach" echoes down the hallway as I walk him to class.  The occasional free spirit will break away from their lunch line to ask Zach for a high five, a skill we had to work on, which is now automatic for him.  

Our kids are better at this stuff than we are.  And I think we have inclusion to blame for that.

Happy 43rd to Me!

After one of the rockiest autumns I can ever remember, things seem to have taken a turn and I feel comfortable taking the time to tell you about them.  Zach had a really rough fall.  Toileting was lost, language languished, sleep lessened, crying increased, property damage increased, safe behavior decreased, and phone calls came from school on what felt like a near daily basis. At some point, getting only a few hours a sleep a night, I managed to crumble into tears as I asked those whose job it is to help us why it felt like they were giving us a hard time.  Did they not see the exhaustion?  And of course, I was met not with understanding and compassion, but with excuses and defensiveness.  Did they not see the struggle?

He was still my little boy whom I love with all my heart, but  he was requiring constant supervision for his waking hours. With Steve still having to go to work and Sophie to school, that meant all my energies were directed at Zach, and Steve tried to take over when he could. 

All my plans for my advocacy work seemed lost.  How long we could bear the pace was an unknown.  I wasn't angry - just weak. I went to my doctor to tell him there was something wrong with me - I was so tired even when I did manage to get 6 hours of sleep.  He set me straight:  Most people REQUIRE 8 hours.  This is not a flexible ideal, it is not a sign of weakness, it is something intrinsic to the human species.  Those who do no get this much sleep are either outliers or liars or hurting their bodies by not getting enough rest.  I was so glad that he made me feel not so guilty about feeling a desperate need to sleep.  So many people seemed to laugh at our situation - we are not talking about a newborn people!  We are talking about a 6 year old with no end in sight!  And by the way - no one is offering to come over and watch my baby so I can take a nap like they did with when they were my new bundles of sleeplessness.  And there are no naps - well except if you count the ones he takes at school.  Ugh!  (He only goes to school for 2.5 hours - so when the notes were coming home that he was sleeping for an hour or hour and a half of that time, you could say that I was not the happiest of campers.)

There is more to come - and good news at that!  But not for tonight - 'cause I am going out with some friends to celebrate.  Before I do, I want to share a few things with you all.  I had the pleasure of  having lunch with my Mommy today.  She took me out to a favorite restaurant and even though it was cloudy and grey, it was so pleasant to look over Skaneateles Lake while we dined.  It was such a gift to have a moment, just her and I, together.

Even though I know I am not her favorite, and we are alike in some of the not good ways, and differ in opinions on others,  she is my Mom, she tried her best to do what was right, she gave me life and love, too.

Anyhow, it got me thinking after I dropped her off, about everyone, the state of my life, the struggles we have gone through, the struggles we know others are facing, and the fact that one never knows when their time will come. I have a terrible fear of public speaking that I have been slowly working on, and even a more fierce fear of seeing myself in pictures or videotape.  As I have gotten older, I have begun to realize so many of my fears only hurt me, not protect me. My biggest concern is in not letting those who matter to me know it before it's too late.  So here it goes:

Tears at the Eye Glass Store: A Revelation that Love Still Exists

I am completely aware of some things going on in our lives that others might think I don't.  I either feel that I have no control over them or that I am too under water to handle them.  I know that I am chronically behind in paperwork, thank yous, getting things organized for Zach and Sophie, cooking healthy meals, and doing those things for loved ones that need a little help and encouragement that I would like to, let's not even talk about my attitude.  As I had mentioned in our Christmas/ New Years letter, Mom is now on oxygen full time.  As much as others don't like to think about it, I do all the time; we are on limited time with her. 

This is in the back of my head, probably even more-so than my siblings, most likely since I have had a fear of my parents dying since I was really young.  My parents were older when they had me, a little bit more unusual than it is today, and it was a frequent topic of conversation.  At one point a school acquaintance saw me and my father at the all, and thought he was my grandfather.  The notion of them being so much older always caused me to worry about losing them.  I frequently had nightmares as a child of them dying.  I was in my late 20's when Dad passed, 14 years ago today. Every time I go to a wedding and see that the father/daughter dance is about to commence, I excuse myself; it's a little too difficult for me to witness.  I think about what life would be like if my father was around for my kids all the time.  He was such a terrific grandpa - it is such a loss for my kids to not have him.  They don't know what it is like to have someone so jovial and funny go out of their way for them like he did.  He was the type of man that made everyone feel like they were his favorite; he was adeptly skilled at how to make people feel special.  I try to fill that void for my kids since really there is no one to step up and take the place of them having grandfathers.  I admit to being indulgent and wanting to give them things not yet worked for.

I tried to repay Dad for all he did for me when he was alive - but I was just starting out didn't have a ton to offer.  I will always be happy to know I helped him by his first brand new car.  Doing things for Mom has been tricky for me.  When Pops first died, we organized a trip to Paradise Island - she still will talk about it!  As her health began to fail, it was things like taking her out to dinner, fixing things around the house, and gift cards to favorite stores and restaurants.  I have felt guilty that for the last three years, I have been able to take my dear mother-in-law to NYC to a show and dinner for the day, something her, Sophie, and I love. I haven't been able to bring my own mother, who I also know would love it, but would be unable to withstand the required walking in NYC.  So this year, I was able to get show tickets for White Christmas, playing right here in Syracuse.  I was so excited that I was going to take my mother to a show!  And then the day came, and when I called to check on her, she was wary of the trip and the venue, and decided against going.  I was able to find a replacement to take her ticket, and the show was very good - she would have loved it.  But it was hard for me to enjoy, the intent had been lost.  It caused my heart to ache.

It's so hard for me to do things for Mom right now.  Zach is a ball of fire - needing to be carefully watched, having little support to help, working and going to school, attending to the house, the husband, and Sophie too.  There is no time left over - in fact, usually, there is time carved out of sleep and caring for ourselves to get those things done.  I am torn right now, knowing it's her last years and I am not really able to do much to bring her any joy.  Guilt plagues me daily. 

Christmas was nice - filled with lots of festivities, parties, eating, get togethers, eating, shopping, eating playing, eating... Steve and I struggle at this time of year.  Steve, because it is so heavily ladened with memories of his father who adored Christmas, and mine because it was when my father passed - a week or so before Christmas throughout the New Year spent at Crouse Hospital ICU.

We tend to spend the holidays by staying very busy - trying to keep the kids active and our brains not focused on our sorrows.   Zach doesn't appear to love Santa - but did allow him to rock next to him. 

I will carve out the time and spend it with Mom.  I realize that it won't be how I want it to be; I  can see that we are approaching a sunset.  I also need to carve out more time for us - I think filling life with all this work all the time does offer a sense of purpose, but I finally have come to the realization that repression is a real thing in my life.

With Aunt Cindy in town to offer up a little help, Steve managed to take some time off, and we were able to go to the updated Carousel Mall, now known as Destinty USA.  We are not mall goers, but without the sense to know where to go for eye glasses, we thought we would just hit the Lens Crafters there. Steve has been wearing and old prescription for almost 2 years now, all after an incident with his old glasses.  A friend's teenage son, who has autism, took Steve's glasses off of him while visiting their pool, and threw them into the bottom of the pool.  Upon retrieval, they were thoroughly scratched. He didn't have the heart to tell the boy's mother, nor did we have the insurance coverage to purchase another pair for the year.  So time marched on, and life got too hectic, too hectic for Steven to even think to go the following year and replace his old glasses.

Steve's vision, particularly in one eye, is pretty severely limited.  I have known for many years, that one of his dreams would be able to not require glasses, but with present technology, that is not possible.  He tried contacts in the past, after several fittings, he realized his astigmatism was too severe for him to ever be comfortable. 

So here we were nearly 2 years later, getting those new glasses ordered.  As the sales people helped him pick out frames, we then sat down to pay for these bad boys.  All of a sudden, I was overcome with emotion, and sat their tearing in the middle of the eye glass store at the mall.  I knew two things at that moment:  Steve and I neglect ourselves too much too often, and despite our strained relationship, I truly love my husband. It felt like a relief to go and be together without children.  It felt sad to realize that my husband's comfort and vision were being neglected because of the constant needs we are attending to.

If there is one thing I learned from my parents, it's that a good parent will sacrifice for their children.  If there is another thing I learned from observation, it's also important to recognize that we are part of humanity and need to treat ourselves with the kindness we wish to treat others with; after all, we are not taking care of Zach and trying to help others as a flagellation or other form of punishment.  We are doing it because of the love in our hearts and the desire to share this love. Tears in the eye glass shop made realize these lessons, something I hadn't known about myself or believed in.  I am still surprised at all the lessons to be learned at this ripe old age.

14 years and I still miss him so much. I heard Steve crumple a shopping bag this morning and thought of him.(Pops was a chronic shopper and could probably taught a course in consumer economics with his coupon prowess!)  I wish I could ask him what he wants for me to do to make sure these years count for Mom.  He hasn't come to me in my dreams in several years now.  I guess his passing reassured me of a lesson that he had always lived, not to take this time and those you love for granted.  Love you Pops.

Happy Halloween!

Sophie:  Ms. Brown, the Brown M&M that everyone thinks is naked.
Zach: Larry the Cucumber from Veggie Tales
Leanne:  Queen 80s with Shoulder Pads and All
Steve: Some sort of Outback Ranger Dude

All costumes homemade! 

Kid Party

I end up talking a lot from my perspective in this blog.  I kind of view myself as a series of sensors in which we can sort of measure various characteristics of our family life since I am chief operating officer of the Morphet Homestead.  When I view past posts - I am sensing a bit of an evolution about myself.

Recently, Parade magazine had an article about Kevin Powers, an author who wrote of his experiences as a veteran of the Iraq War, entitled  "The Yellow Birds". As I read through the article, I was struck by an idea that I could relate to: re-entry into the "real" world. While I have no experience nor true understanding of what it means to serve the military in time of war, I was able to understand this feeling of different worlds. Mr. Powers writes about these ideas of coming home: "No matter how extreme the circumstances you’re in, they become normal...you’ve been in this kind of heightened state for so long, just the ordinary nature of everyday life can be confusing and frustrating."

For the past few years, I avoided birthday parties for Zach.  I really wasn't all that confident that he understood or appreciated the concept nor the party, and felt that I was pushing one world onto him that he didn't appear to want to participate in.  I also had a hard time rectifying who I would invite, what I would say to those invited, and could I deal with the possibility of unpleasant surprises when some of Zach's guests' parents realized he had a disability.   Yes, I am a very flawed person.  I was too weak to stand up to this situation so I let it pass.  I am not sure why - perhaps all my strength has been used for other battles along the way?


I am not quite sure what made me braver this year, perhaps it was the fact that I have bonded with some very strong women (and a few men) who are parents to special needs children - and I don't see them fretting over stuff like this.  Perhaps I don't care what others think of me quite as much as I did a few years ago.  But I also view life a little differently now, after years of feeling like I was in control of so much, I am more now curious about the possibilities of what could be.  So the invitations went out - and lo' and behold the RSVP phone calls came in from some of Zach's schoolmates with proclamations as grand as: "She is so excited about coming to Zach's party."  or "My son keeps on asking if it is Zach's party yet."

I just love kids.  They all know Zach has autism - they might not know it by name, but they know something is up with him.  Zach is in a typical class where he has an aid to help support him.  Knowing Zach is different did not deter many of these kids from attending his party.  I have a feeling they didn't think twice about it.  Wish I was that great.

So they came and there was bouncing in the bounce houses and there was cake and there were presents.  I would like to say it was exactly what I would have had for him had he been a neuro-typical child, but I would be lying.  I would never have invited some additional friends with special needs as I did to this party.  It wasn't that I was prejudiced per se, but I wouldn't have been as intimate as I am now with some of these great kids, I would have been afraid to reach out to them and their families.  Afraid of what?  I am not quite sure.  Probably not being able to relate more than anything.  Ahh - those different worlds.

Truth be told, this party was difficult for me - especially when conversing with the parents of children who have no (noticeable) special needs.  How do I relate that I followed Zach around for hours prior to ensure he had a bowel movement so he did not decide to take the opportunity in one of the fine inflatable structures at the House of Bounce?  How do I explain to them that although I never have seen Zach be aggressive to another child, that didn't mean I could trust him to not accidentally ram someone when going down the slide since he so often doesn't seem to understand the concept of personal space?  Or how I can't take my eyes of him or be out of quick reach of him, because if he wants to bolt, he will do so and end up in the middle of the parking lot, even though he hasn't done it before - nothing keeps me from worry that this won't be the first time. 

As I attended my school's PTA meeting, I heard some of the parents complaining that so-and-so teacher requested the kids have an orange 3 ring binder and this was some sort of travesty.   I thought to myself: "If people only realized we were dropping $2500 a month on therapy, we have driven all over the east coast for doctors appointments for him, paid for thousands of dollars of supplies, attended more classes and trainings on his treatment and education than a graduate student, we get the sleep of parents of a newborn, and still have all the typical things to worry about - a mortgage to pay, cars to keep up, aging family members, and more so - our children's futures which are more uncertain than anything."  I couldn't help but think: "Really?  Orange folders are what these people have gripes about?"  I don't mean to put these people down.  Perhaps this is an unreasonable request of Teacher X for some reason or another.  It just seems that in this other world that we travel in, that seems pretty innocuous.  This makes me very hard to relate to I am sure as my eyes glaze over about having to run to staples for  a $3.25 folder.

I heard some parents discussing the budgets for our modified sports programs being cut, I purposely try not to pay attention for fear of what I might hear.  Lurking on the internet as long as I have, I know that children like mine, with special needs, are frequently the talk of anonymous online newsrooms and how money is wasted on special education.  Comments on the order of "because of those kids little Johnny isn't going to be able to travel with the lacrosse team." or "Why are we spending a dollar on a fifty cent kid?"  I just cannot even let myself approach these conversations. 

Now, more often than not, people, even if they do feel that way, usually have the sense of civility to at least not mention these things publicly.  And in fact, there are people who are so supportive of those with special needs without having a personal reason to be; I am in awe of their empathy. Compassion on that level was not innate for me. 

I wish there was a way to reach out to those people who I once was, and let them know how to extend themselves to others, others who face greater difficulties in this life just out of sheer luck, not personal fault.   With autism now affecting 1 in 88 - it sure does feel like those numbers are increasing even though the "experts" are in disagreement as to if they are.  As one mom I know likes to say: "Autism: coming to house near you."

So Zach had what appeared to be a very typical kid party.  For that I am so grateful - the other parents didn't appear shocked when they met Zach.  Did their kids tell them beforehand?  I was trying my best to act normal, while parents spoke of soccer, spelling tests, and vacations I nodded with some recognition, although applied behavior analysis, hippotherapy, joint attention, spontaneous speech, and modified curriculum are generally more of what is going through my head when I think of Zach.

We live in a heightened state around here, we are limited in the activities we choose and we are "always on" as long as Zach is awake, for his safety and well being.  We have become accustomed to it, but the ability to relate to those without this makes us pretty much avoid a lot of social engagements.  As I explained how I worked with my son to a member of the school staff, she looked at me in surprise and responded: "Boy, you sure must have a lot of patience."  It's what's required to parent a special needs kid.  That and money.

Now before people go pitying us - please don't.  As crazy as our life is, I am so happy to have both my kids.  Zach's circumstances have taught me so much about life, I am definitely a better person for this.  As I said before, I wasn't born with the innate sense of understanding to those differently abled from myself, I frequently took my abilities in life for granted.  In the words of Madame Blueberry from Veggie Tales: "A Thankful Heart is a Happy Heart." I was never truly grateful for all I had, so I never was truly happy.  Zach has enriched my life this way - I truly am a much happier person!

 Maybe one day I can manage to get this very basic tenant in life across to others.  But for now, I will just relish the smiles of my dear boy and make sure he doesn't flood the bathroom, again.

Zach turns 6!

Didn't manage pictures of Zach's first day of school - it took all I had to get him on the bus. Not sure why - but he has had a few hiccups going to school this year. But all is OK - actually it is pretty darned good!

We had asked for Zach to repeat kindergarten so we are doing round 2. A chance for us to get things worked out understanding the expectations and determining Zach's reactions to them.  He has a good team with a new SLP.
 

But most exciting has been some of his language use. He has spontaneously used single words appropriately - words like "yes", "eat", "mouth" and "satin". Yeah - that satin one really threw us for a loop - no idea where that came from - all I can say is that we were in a fabric store and he went up to a bolt of fabric and started saying "satin, satin, satin" and by the way - yes indeedy, the fabric was satin!

Sleep has continued to be an issue for him (us!). Zach sporadically only sleeps around 4-5 hours a  night which we are having a hard time attributing it to anything in particular. This means that Zach is sometimes awake at 3am for the day. Being that Steve and I pretty much get a lot of our stuff done after the kids go to bed - this frequently means we might have only gotten 3 or 4 hours of sleep. Let's just say that all the caffeine/B12 energy drinks in the world cannot help you after several days of this. Is it any surprise that Steve and I can frequently found snipping at one another like a couple of children?  What can I say - sleep deprivation doesn't sound so bad - but going on years of it now and with the demands of a special needs child, I can tell you it is a big component of why things can feel torturous at times.

Zach's relationship with me, Mom, has waned recently - leaving me a little saddened, only to be made up for the fact that he just loves his Dada, Steve, so strongly now! From a few of the parent groups I have been reading in (of typical children) I noticed that this is not uncommon in this age group.

Zach's family birthday party was great fun yesterday. He really loves opening up presents! And he really enjoys people singing for him - I loved watching him look around the table at all the people singing to him with wonder in his face. 

And then there was soy whipped cream which makes me feel so happy to be able to give him something fun to eat that doesn't upset his tummy like good ol' dairy whipped cream.

Zach is a happy little guy who has a great smile and we are still working on getting him to communicate more.  Sometimes I wonder at how he has gotten this far without speech/communication.  And then when I watch the drama and gossip of reality-TV and facebook posts I think - maybe the emphasis on language communication is overrated.  Zach may just be smarter than the rest of us that way!

Happy Birthday to my Beautiful Boy!