The Meeting

I still get butterflies and a bit of a pit in my stomach.  Ironic I know, a special education teacher who runs IFSP’s and IEP’s all year round dreading the very thing she makes her livelihood doing. I have NO beef with the district, I don’t have to suit up in battle armor as so many folks I see online do.  We have a great relationship with the team and I truly feel that everyone has Zach’s very best interest in mind. Thankfully communication is always open so we do not have to wait until “The Meeting” to talk about tweaks to his daily schedule or to discuss questions or concerns.

The reason I dread “The Meeting” is because on that day, when the tables are turned, I am a parent not a teacher and we have to talk about some really difficult subjects.  It is not easy to sit across the table from up to a half dozen professionals and listen to all the things your child struggles with.  Yes there will be positives….lots of positives but there are always those things that continue to give him difficulty and they will need to be discussed.

Goals and objectives are tough.  Progress is slow and skills are limited, it is not easy to think about where to start.  Communication is always a huge concern.  We have been “talking” about communication from his very first IFSP. We can’t and won’t give up hope.  We still hang on to a dream that Zach will find a way to effectively communicate. Now in his post high years our focus has turned to an even greater push for life skills: Folding towels, helping with laundry, food prep and clean up.  Community outings are another topic on the table, Zach loves the opportunity to go out and about at least once a week.

I don’t think about the “what ifs” everyday…but on that day, “The meeting day” those always seem to surface.  Pictures flash into my mind of how much time has passed and how little time in school remains.  A flicker of desperation can bring me to tears at a moment’s notice. …. I feel vulnerable.

I  keep these feelings in mind when I am one of the professionals at the table, when I am the one asking for signatures instead of giving them. I will make it through but I can’t lie…I will be glad when it’s over.

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Minion Monday Guest Post: Food for Thought!

chef minionMy friend at Hardlybored is under the weather and asked for some help with her Minion Monday.  I offered my services and started wracking my brain about what topic I would tackle.  I decided to keep it light and fun….The post contains several “food” based references….let’s see how many you can find.  PS I took some liberties with spelling where needed 🙂

The Hardlybored family is feeling crumby. I have a sneaking suspicion they are starting to go bananas and get cabin fever! Trying to keep up with your daily blog posts is no piece of cake when you are not feeling well so they asked for some help.  I offered and had this pie in the sky idea that I would write a post with a smorgasbord of hidden food references.

When I first “met” Hardlybored thorough an online  group I knew she was the crem dela crem of writers.  Her page not only has tons of yummy  gluten free recipes but also  has funny and heartfelt posts about autism and other interesting topics.  The page is a virtual buffet of information, fun and great ideas,  I have always enjoyed her Minion Monday posts as they are the cherry on top of an already wonderful page. The Minion posts are the bread and butter of the page so to speak, they bring olive the page to a great start each week.

I think many of us started writing for the same reason…we all had a common goal.  I know I sunk my teeth into the blogging world initially as a way to spread autism awareness and acceptance on my personal page two April’s ago for autism awareness month. I soon discovered that those posts were simply the appetizer, that the meat of my writing would start once I started my blog and Facebook page.

I have been fortunate to meet so many wonderful writers that motivate me daily.  The chef’s that cook up many of my favorite blogs are now some of my greatest mintors and online friends.   I look forward to cooking up new and creative things to dish about because of their inspiration.

As we toast the week ahead I hope you don’t find this post too cheesy.  I am sure that the folks at Hardlybored will give that ole creeping crud its Just Desserts and will be back serving up  s’more wonderful posts very soon.

Bon Appetite

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Compassion is Alive and Well

Compassion is defined as sympathetic pity and concern for the sufferings or misfortunes of others.  I don’t define compassion that way.  I do not think pity is compassion, in fact I view pity as condescending and disingenuous.  To me compassion is care and concern, it is putting others before ourselves when needed it is kindness, empathy and selflessness all rolled up in one.

I have looked compassion in the eye.  I have seen it in action on more than one occasion.  No I am not a Pollyanna or bleeding heart, and I have seen it with the naked eye, not rose colored glasses.

I see compassion each day in my co-workers; Special education teachers that give of themselves in order to advocate and encourage others.  Yes teaching is a career, we get paid, but trust me if it was only a pay check most would not stay in the career.  I am thankful to say that the teachers I work with think of their career as a passion and love the kids as their very own.  They are the first to step in when their students are not being treated with kindness or compassion.

I have witnessed some of the greatest acts of compassion at special needs camps run by young adults. Many folks scoff at the young people of today, saying they are lazy, selfish and self-centered.  I am here to tell you to have faith in the next generation, they are some of the most compassionate beings on the planet.

I always considered the friends my daughter hung out with in high school to be kind and compassionate individuals.  They were always accepting of our son with differing abilities and many of them worked at the summer  day camp for special needs kids, teens and adults in the community.  As my daughter went off to college, she again surrounded herself with young adults that had a true compassion and  sense of caring for others.  She began working at a summer camp on the other side of the state that gives adults with developmental and physical disabilities the true over night camping experience.  It was there that she found her calling and love for working with those with differing abilities.  When my husband and I went to visit you could have knocked me over with a feather.  Here were young adults in their late teens and early twenties not only working with these campers but developing friendships and relationships with them.  The counselors and health staff are on 24/7 and give of themselves freely so that the campers can have THE most amazing experiences.  To witness these young adults that have never had children of their own and many who have had limited experience with the special needs population connecting with the campers in a way that makes any parent proud is true compassion.  The counselors spend the entire summer working with campers week after week getting limited sleep and limited breaks.  Sure, they get paid but again, there is NO denying that this is much more than a job, the connection between campers and counselors is undeniable.

So parents, teach your children well, live as an example of care and compassion and your children will follow in your footsteps.  There will always be a@@holes in the world that get their kicks from bullying and belittling but I believe that Compassion is alive and well and you don’t have to look too far to find it if you foster it yourself.

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Swallowing the Bitter Pill: Part 1

When you have a child with differing abilities there are many “Pills” you must swallow..the diagnosis pill, the acceptance pill, the journey into special education pill. We have more pills to swallow than Carter! Some pills are a bit easier to swallow than others………….

We have known for quite some time that Zach will never be able to live independently.  He will require a lifetime of round the clock supervision and care.  When he was diagnosed with Ring 22 syndrome and autism almost seventeen years ago we had no idea what the future would hold and of course we remained hopeful that through love and intervention our son would make amazing strides.  We knew very little about Ring 22 syndrome and even the specialists we worked with had never had a patient with the syndrome.  I found a group on the internet and learned very quickly that as with most things there is a spectrum of how the syndrome manifests itself.  There are commonalities: Speech delay, Cognitive concerns, many individuals exhibit behaviors consistent with Autism Spectrum Disorder, behavioral concerns etc etc etc.  I did not however know about  autism regression and never anticipated to see some of the things that Zach was able to do fade away never to be seen again.  I never expected that he would take one step forward and then three steps back.  We never ever envisioned that his needs would be so significant.

That all sounds so incredibly negative …Zach has made amazing strides and he still surprises us everyday but the bottom line is that I have a soon to be 20 year old that can not do anything independently.  I have a soon to be 20 year old that needs assistance with all Activities of Daily Living, that is non-verbal, that has no sense of danger, that would leave a home and run into oncoming traffic, that could choke because he doesn’t eat properly, that still has sleeping difficulties, that has difficulty entertaining himself, that eats things he shouldn’t, that will get into his feces etc.   This is a very negative picture, but these are the cold hard facts.  Of course he has many wonderful qualities, he is sweet, funny, adorable, tenacious and I could go on and on ……….We love him in spite of and because of all of these things but it scares the absolute shit out of me that someone who does not know him and love him will not see past all of the tough stuff to get to the good stuff.  There are no words that can possibly describe the fear that overtakes me when I think of someone not seeing who Zach really is…but only seeing him as a difficult “client” in their care.

As the years passed and Zach did not make the progress we had hoped for, it became apparent that he was significantly impaired and would never be able to live independently.  In the early years we never really talked about what the living arrangements for him would be in the future.  When people would ask me “Do you think he will be able to live on his own and take care of himself?” I always answered “I don’t know, we will have to wait and see.”  but I knew….I knew it would never be.  Yet another “pill” to swallow.   We also came to the realization that we would not be able to provide the level of constant care that Zach will require as we age.

When he was little it seemed that these rough decisions were so far away yet in the blink of an eye here we are and the time has come to start the serious discussions of what we want for Zach’s future.  Some may think we are awful to think about moving Zach out or that we are selfish.  I suppose there is an element of selfishness, of course Mike and I are ready to live as empty nesters and to have a level of spontaneity in our lives that is afforded to most our age.  But I also feel we would be selfish to try and keep him here with aging, tired, worn out parents. Some may be thinking that his older sister should take him to live with her once we can no longer do it.  I will say vehemently that not only do I not expect her to do it, I don’t want her to do it.  Of course i want her to look out for him and make sure he is being taken care of and treated well. But just as we want what’s best for Zach, we want what’s best for Emily.   Our dream is that he be in a place where is is safe and happy and well taken-care of.  We feel that by starting now we can play an active roll in his adjustment to his new surroundings, take him on outings, bring him home for dinners, family events  and holidays.

Nothing about this decision is easy, it is by far the most difficult and heart wrenching and bitter pill we have to swallow.

PART 2: THE SEARCH IS ON…AND IT IS GOING TO BE A BATTLE.