Monday, February 20, 2017

Do's and Don't

For years there have been things said to me from strangers and well meaning friends and family for which I  found myself devoid of words, either filled with outrage or utterly dumbfounded that such insensitivity could be said.  It's high time I write this post in the hopes it will save others the pain I have experienced from such comments. and hopefully bring greater sensitivity and understanding to all.

1.  DON'T  ask if doctors know if he/she will be high functioning or if he/she will be able to live independently one day.

First off, consider how ridiculous this question is.  Can anyone honestly accurately predict any persons potential?  How would you feel if I ask just how successful or independent you child will be 20 years from now?  Honestly I know plenty of neurotypical children who don't leave home by then, does this mean they have failed?  Perhaps you might say there are extenuating circumstances.  Well lets just call our child's struggles 'long term extenuating circumstances'.  And like all circumstances, things can change, there is always new technology and therapy, living aid centers. Remember, all children, typical and non, can change, they can grow and surprise us in ways we cannot see as a parent .  First and foremost they are a being with untapped potential, their 'disabilites' are not who they are, they are simply the struggles they will have to work on throughout life.
Bubbalicious is absolutely fascinated by the guitar.

2.  DON'T minimize a special needs parent's fatigue. 

You cannot begin to imagine how lonely it is for a special needs  parent.  There is more work, longer days, endless phone calls, paperwork and meetings.  This is just the physical aspect, consider the number of worries we might have, "Is our therapist a good fit?  Is the waitlist worth the change?  What new activities/innovations, etc are out that might help with his/her tone, speech, feeding, social interactions .... the list goes on and on my friend.  Then there is the financial aspect - how much, when is it due, what is really helpful versus needful.  What might need to be set aside for this child's future.   And then if there are typical children at home there is the guilt of not being able to be there enough, to give them typical life experiences because said sibling struggles with ....

No parent of a special needs child ever wishes to list the endless responsibilities - there's the nagging fear that says we aren't loving our child enough if we dare verbalize these things.  But if you find us rolling our eyes because you cannot find 5 mins to message someone or hop on Facebook, understand that 5 minutes inattention (we are not talking about being alone, that doesn't exist in our world) doesn't come without some serious repercussions.  When we say we are tired we are tired in ways you don't know exist.

3.  DON'T put us on a pedestal.

I hate hearing people say things like, "You're amazing, I could never do what you do."  because it's simply not true.  The challenge of a special needs child came and just as with all life experiences.  We simply find ourselves doing it or dealing with it because we have no other choice. (aside from just rolling over dying)  No matter what you see we feel the inadequacies daily, hourly at times.  Hearing such 'compliments' seem to only underline our failings to ourselves and worse, we feel less able to express our struggles in an already lonely place.

Whether it's a belief in a higher being (I personally call this God) or unknown resources within our species, we are all capable of amazing things.  It's just that some of us have been placed in these circumstances and we are simply trying to do our best just as I believe you would do.  In the end even if you still think this, don't express it.

Until we received Bubby's diagnosis of autism we never really understood why he loved to swing and spin so much, it fills an actual physical need for him

So what can you do. 

1.  DO learn  to listen. 

Frankly it's won't be comfortable to listen to a special needs parent.  You're bound to want to 'fix' things that can't be fixed.  Perhaps there is a new therapy or diet you've heard of, use words like, "Have you heard of ... Would you think such and such might help?"  but never push beyond that.  In all likelihood we've probably heard through our many online forums or we are budgeting for another expense or too overwhelmed with paperwork to get to that point. 

Just listen.  We don't need the 'bright side' pointed out to us or platitudes such as 'God only gives us what we can handle' .  We NEED a friend, one who will just allow us moments of grief, complaint and fear without judging or fixing us and our families.  When we find the moments of courage to really express these things to someone it means so that we are heard.

2.  DO find practical small meaningful ways to serve us.

"Call if you need anything," is nice and all but hardly helpful.  Honestly we are working just to get by the hours and each day.  Our schedules revolve around therapies, appoinments, we always need something but can't think of it in the moment or feel too abashed to ask. It's the endless little things that get to us.  I can't begin to tell you how much gratitude I feel when I'm chasing my child down for the millionth time that day when someone takes the time to reassure the siblings left behind, to talk to them and plays with them to make them feel special.  When people offer to watch my special needs son so I can shower longer than 3 minutes, or come over and look for ways to help put my house in order. 

I've had someone offer to take the kids while my husband and I take a vacation and I'll be honest, as sweet as this is, it is more overwhelming to me than anything.  The planning, the work, then dealing with the aftermath for a child who struggles just going to a different store let alone missing his/her parents for a day or two is too much.  It's rarely convenient to serve us.  The lack of consistent presence makes it hard to you to know our needs, for our children to be comfortable with you.  It does take an investment of time and an energy to REALLY BE THERE.  Those that have, truly become the village we love and feel profoundly grateful for.

3.DO try and get to know our special needs child as a child first.

Not all Down Syndrome children are always happy, not all autistic children are unable to socially engage.  They are each individuals.  Just because I have a girlfriend who loves shoes and make-up it doesn't mean all girls will be just like her. 

Getting to know this individual may mean you find yourself doing atypical things, whether it's lying on the floor with them staring at the patterns on the ceiling, repetitively playing with an object they enjoy or imitating a sound they find pleasing.  It will rarely be a question and answer format, eye contact or touch may often be difficult but it doesn't mean they don't want to make connections too.  The need to connect is innate in all living things and is especially deep and rewarding in those who are isolated whether by diagnosis, sensory overload or simply being misunderstood. 

The work that it takes to make these relationships grow, both with the individual and the parents cannot be measured.  I have tried to convey to those who have served me and my family how much they have a place in my heart, no matter how short the duration of our time together.  They carry and lift us and ease my burden and I am blessed to have them in my life.  They are my angels!

Thursday, February 16, 2017

Missing Ms Kera

We have always loved all those who become a part of Eli's Allies.  They are our greater family, our eyes, our hands, our hearts.  Losing a member is hard especially when it's one we love so much!  Ms Kera is one of these and we feel keenly the loss.

Ms Kera evolved quickly from Bubby's babysitter, to running partner, teacher and coach to someone he insisted on taking to the door, giving a hug goodbye and watching her get to her car before going in.  (Such the little gentleman!). If you know him, you know this is a BIG deal!  Her influence extends to more than just him, Pumpkin squeals with delight when she comes, Bug-love races to get the door and Bud chatters non- stop to her.

I can't express how much we love and appreciate Kera.   it's so hard to really get to know him, it means more than words can say (especially to a mother) when someone goes beyond the job and grows to love him and help him reach his potential.  I loved how she found the balance between allowing him a break and pushing him to work a little more.   There was pride in her voice when she saw progress and I knew he was in good hands as I worked on homeschooling the oldest two.

She accomplished what an IEP AND preschool didn't do in over 1.5 years, he learned how to say his colors and correctly identify them, he says hello and goodbye,  his fine motor skills improved and she helped to re-engage him to interact with the world.  We will miss her dearly but wish her the very best as she embarks on this new adventure of school and career.  Once a member of Eli's Allies you are always a member of our family.  We love you Ms. Kera!

Wednesday, February 15, 2017

Year of the Rooster

We love Chinese New Year and all that it means to us - good food, fun clothes, treats and laise.  As the years have gone past we've begun a new tradition of sharing this part of our culture with everyone.  With 4 munchkins it's become harder to do all the usual- cleaning the house too to bottoms, haircuts, new clothes - but we hold on to the ones we have loved best.   Sharing this fun with our friends is one of the favorite.   This time we shared with our little homeschool coop and had tons of fun!

 We started off by looking at how Chinese characters developed over time and how some of the more complex characters give layers to the meaning of the words.  Then they got to try their hand at copying some of the characters.

One of the boys loves origami and he and his mom taught us how to fold cranes.

We had to slurp our 'long life' noodles and everyone got to try tofu and other new year candies.

There was a story read, Chinese lanterns made, a video of the complex lion dance competitions.  It turned out to be a full morning with lots of fun memories.

We thought we missed the festivities in Phoenix since the oldest two and Kent went out of town for the Tucson gem and mineral show.  Luckily we found out it was after the new year and it made for a fun weekend morning.

Don't mess with this little guy, he was impressive!
Pumpkin was absolutely fascinated with the kung fu boys - asking all sorts of questions about the stick, swords and movements.  She didn't want to watch the girls dancing though and came up with her own little moves.

The older two wandered more with Kent and learned more about the culture.  You could try out Chinese yo-yo's, get some cooking lessons, play some of the drums.  Unfortunately Kent forgot to take pictures but we did capture someone else on video.

While we miss so many of our Asian friends and wish they were nearer to celebrate with, we were glad to enjoy sharing it with friends.  Happy Year of the Rooster and many wishes for a Long and Prosperous New Year!

Starting Mondays Right!

We just recently joined a small homeschool group/coop of six families.  Between the many talents of the moms they will have 14 weeks of science, 7 weeks of art, cooking and sewing once a week on Monday mornings.  One mom  has an amazing home large enough to house the 11 students and their 9 siblings.  Both Bud and Bug have found some good friends in the group and they are having a blast!!

It's been really nice for me since it forces me to cover the science and art chapters every week and often the kids are interested enough that we've supplemented with videos we find on YouTube.  The only down side is that we now have 3 out of our 5 mornings that get a little harried as we try to get out on time. It's worth it though and as crazy as it gets we are all learning a ton and having fun with it!

Bread in a bag and strawberry jam day!  Little ones had plenty of strawberries to snack on.

Art lessons on DaVinci and making their own inventions.

Self portraits like Rembrant.

Bug's finished self portrait.

Monday before Valentine's day had a cookie decorating class.  Bubby was such a charmer and clearly communicated his desires for cookies to everyone that he must have eaten nearly 6 before I could stop him!  Glad he's talking to other adults now but I wished cookies weren't the only incentive!

Predator and prey relationships in science.  M&M candies thrown into baskets with scrunched up papers.  The candies that 'camoflaged' in survived the predator children.  Bud was particularly keen on this experiment!

While I miss not being able to be right by the oldest two and see them learn, I've had time to work one on one with Bubby and Pumpkin.  Their friends are learning sign language and reinforcing their understanding of numbers and letter.  It's nice that they model the behavior well for Bubby.  The kids have all been great with him, striving to include him or watch out when he's being a monkey and trying to throw rocks in the pool!

We're so blessed to have found this group.  It's the best way to start the week!

Tuesday, February 14, 2017

Love to all the Moms

So today was one of those days .... we rushed off first thing for an appointment for Bug to check her vision.  We had confirmed the need for vision therapy, something not covered by insurance so my mind is swimming with the calculated costs and further strain on our busy schedule.  We were off to a small Valentines party where I ran after Bubby, dealt with a moody boy and never ate lunch.  We came home and in the five minutes I was putting Pumpkin down Bubby got a chair, a bread knife and hooked it onto the box of donuts left from the party and dragged them down.  Not liking the texture of the fudge he thought he'd wipe it on the only chair that can't be easily washed.  With Pumpkin not sleeping, crazy messy diapers - I was so done for the day so I got some ice cream and locked my bedroom door.

Valentine's Day and I was not feeling the love.  I needed space and a moment to breath.  Sometimes it's just a prayer and a reminder of what really matters.  So after 20 minutes I took a deep breath and went back out to round up the oldest two to help me cook dinner and make our surprise dessert for Kent.

The rest of the evening went well, it was still crazy but somehow I wasn't just worn but back in the small happy moments when things are just right.  But I had been ready to quit on the day, have Kent bring pizza, ditch the surprise dessert and cooking with the kids -but  I'm glad I didn't.

Balance and motherhood is so elusive.  I'm not saying ordering in dinner equates with failure, but I am saying that letting go of what went wrong or the worries I can't do anything about needed to happen before I could go back in and just love.   I needed to love me, even if it was just 20 minutes with ice cream, prayer and a browsing a magazine.

So this is a Happy Valentines Day wish to all moms.  We do crazy work, nobody in their right mind would chose it even with a decent paycheck!  We do work that matters and really does make a difference.  And we need to love ourselves a little better - because when we do we can love those that mean the most to us more than we thought possible!

I love these sugar babies, even with all the craziness they bring!