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What I Mean When I Say My Special Needs Son is a Blessing.

That's my best pirate face!

On this Thanksgiving day, I ponder on how many parents of special needs children believe what a blessing their child is in their lives.  How can they say their child is a blessing with so many sacrifices and challenges that comes with a severe disability that requires total care like my son?  Luki is 8 and still incontinent of stool and urine.   He is nonverbal and we have not had much success with using a communication device.  The only two commands he has mastered are "kiss" and "high 5".  He will occasionally give me an icon in exchange for a wanted item like a toy or snack and we work on this diligently through ABA therapy.  His ability to communicate with the world is so very limited. Yet, he is such a sweet and happy boy who gives me very little grief and I wonder in amazement how content he can be in such a state. I hope as he gets older, the realization of his difference does not lead him to despair.  I used to think raising him as a toddler was a challenge and I feared I was not cut out for the job but in hindsight, I realize he was (and is) an angel when compared to his three year old baby brother, Tae.  While Tae is a very sweet little boy, his energy and demand for attention and stimulation can be overwhelming at times.  Like all three year old boys, he has so much energy while Luki is slow in every movement.  Comparing the two boys is like comparing a tortoise and a hare. Tae likes to bite, pull my hair, pinch  and body slam me when I am lying down. I’ve never had to discipline Luki but tonight was the first time at my go at disciplining Tae. I don’t like this part of parenting but I'm not his friend, I’m his mother so it’s very important.  Before Thanksgiving dinner, Tae head butted me and I am left with a swollen eye and forehead.  It was by accident, but such things never happened with Luki.

Getting back on topic:   I've had to make career sacrifices to be Luki's primary caregiver, had to forego higher paying positions, the opportunity to work full time hours and move from graveyard to day shift.  I've had to deal with insurance companies, rude customer service personnel on the phone for medical equipment and on and on,,, don't mean to be a bore with all that headache.  So, I am not sure what other parents mean when they say their child is a special "blessing" in their lives but for me it is a gain of a spiritual nature.  We are all here as spiritual beings having a human experience.  But, sometimes, the lure of the material world can take over our priorities and we can lose sight of our true purpose for being in this world.  I can't speak for everyone else's life purpose but referencing the great spiritual traditions of the world, I suspect it includes being more loving, patient, kind, caring and compassionate . We are all here to learn how to give and receive love because the exchange currency in God's economy is love.  Luki reminds me on a daily basis that the things of this world is illusory and transitory but our soul is eternal.  He reminds and helps me to work on beautifying my soul more than the flesh because he is a beautiful soul in such an imperfect physical body.  And, that is OK.  Through him, my heart has become genuinely more sensitive to the suffering of the world which can feel very uncomfortable at times as things hit me harder than before.  On Thanksgiving morning I asked Gabe what he is thankful for with Luki and we both agree that we are grateful he has been seizure free for over two years, seems happy and we love the sound of his giggles, eats well and poops well (typical parents would not understand what a blessing the latter two are!) Our list is so drastically different for our typical three year old which include him  starting to talk in sentences, eating on his own, making progress with potty training, doing well at daycare and wanting to help with the care of his older brother by attempting to feed and clean him (the last one make my heart melt more than words can say).  I am grateful Luki is teaching Tae to be a loving and caring brother.

With Lucas by my side, it is easier to obey the First Commandment of putting God before all other things because I need to lean on his grace everyday on this unique journey.  And for that I am truly grateful to him.  I believe that before we are born, we all have free will to choose our parents, community, race and even disability we want in our earthly lifetime and some of us choose pretty challenging assignments.  What if Luki chose his disability to help me on my own spiritual journey?  If that be true, I could never repay him for the challenge he has taken on for my sake. I would be eternally indebted to him for his sacrifice. 

To the Mother Offended by People Who Disrepect Her Special Needs Child.

I came across a social media post by a mother of an intellectually disabled child asking for advice on how she can change people's negative and offensive attitudes towards her son.  Someone had said something akin to calling him a "retard" and she wanted advice on how to handle the situation and educate the offender.  Many parents chimed in on the comments section suggesting that she speak up for her child, educate the offender and be an advocate for her son and really let them have it. Some even suggested that she curse the jerk out and that if they were in her shoes, heads would be rolling.  Do any of these advises really encourage people to change their minds and feel remorse for their attitudes?  I don't think many people develop contrite hearts by being chastised.  Just like children who roll their eyes at being reprimanded by their teachers or parents, the attempt to educate can backfire and the parent can end up being ridiculed, too.   I have decided not to react to slights made against people with disabilities except when safety is at risk.  The anger and hurt would  just be wasted energy leaving me drained and negative.  My only recourse for them to become more compassionate is for me to model the behavior I want to see in others by the love and care I show my son.  If they see how well my son is taken care and loved even when he laughs inappropriately or makes strange sounds, my hope is they will come to see him in a more loving light themselves.   Truth be told, loving someone who can't speak, has emotional meltdowns,  requires constant care and safety measures, is prone to seizures, drools, can't control their bowel movements and can never give anything tangible back is not an easy thing to do. So, if my love for my son doesn't sway their hearts, nothing will. I can't make people think and feel what I want.  I can't make people change their minds.  I'm not sure if that is even my (or anybody's) job.  People change only when they are internally compelled by something that touches them in a profound way. The other effective way to change people's views is by drastic draconian measures that leaves no room for independent thought or freedom.  Who wants to live in a society like that? Not me.


That would be my advice, take it or leave it.

I wondered at times why God found it necessary to bring forth totally dependent and disabled souls into the world.  I remember a vision I had of a sea of souls in heaven waiting to come to Earth and expecting their assignments for the duration of their lives.  Some were granted wishes to be brilliant scientists, talented actors, gifted politicians.  When God requested souls to come forth for the assignment of being totally dependent on the care and compassion of others for their survival so that people on Earth can come to experience their own compassionate selves, many turned their faces and hid from God.  They cried out, "That is too hard an assignment! I'd rather be loved, rich, beautiful and admired! I want to be an architect! A movie star! A doctor! A scientist! Anything but that!" But, a few very rare and special souls stood up and said yes to God.  They found the challenge very important in God's scheme of the Universe and they understood its importance more deeply than others. How completely they must have perfected the art of detachment from the ego to take up such a challenge!  Can you imagine how God msut have felt for these souls at that moment? And, the parents must have also signed up for this experience, too even if that sounds completely absurd.  We are all here to awaken and enlighten each other to our own great selves.  Everyone and everything can be used for good.

************************************

“We can reject everything else: religion, ideology, all received wisdom. But we cannot escape the necessity of love and compassion. This, then, is my true religion, my simple faith. In this sense, there is no need for temple or church, for mosque or synagogue, no need for complicated philosophy, doctrine or dogma. Our own heart, our own mind, is the temple.

The doctrine is compassion. Love for others and respect for their rights and dignity, no matter who or what they are: ultimately these are all we need. So long as we practice these in our daily lives, then no matter if we are learned or unlearned, whether we believe in Buddha or God, or follow some other religion or none at all, as long as we have compassion for others and conduct ourselves with restraint out of a sense of responsibility, there is no doubt we will be happy.”

~ The Dalai Lama ~

"How Can I Help?"

Quite often I see posts on social media that asks families with special needs children how they can help ease the load. I have not had any offers so far.  Of course, there are many things people can do to help out a struggling family with limited time and energy to adequately meet the demands of a 24 hour care-giving job.  Meals can be prepared, offers to do chores can be made, providing respite to the parents by offering to babysit for a day? Maybe two?  Financial assistance.  So many ways to help out, aren't there?

I once asked my mom how I can help her out since she lives alone and she told me that the best way to help her out is to do good for myself.  To live responsibly.  Be fiscally responsible.  Be happy in my marriage.  Be a loving mother to my boys.  Be a good citizen for my community.  This made me think about how others can best help us, not just temporarily with offers of services, but in a lasting way which really perhaps maybe the reason why my son incarnated with a rare syndrome.  The best way, as similar to my mother's request, is for others to live a good life.  Be responsible.  Be a kind, caring, sensitive and compassionate person.  Don' mock or be judgmental of those that are different or less fortunate or are spiritually/mentally lost. Be mindful with your words.   Love your families.  Love yourselves.  Do good in your communities.  Seek to know God. Strive to make this world a better place - I know that's a broad statement but you get the sentiment.  If everyone on this Earth did this for my family, how enriched our lives would be.

Having said all that though, I won't refuse offers for respite care and household chores.

A Course in Unexpected Blessings

I've joined a study group online for the book Unexpected Blessings,  the Joys and Possibilities in a Special-Needs Family hosted by the author Sandra Peoples ( link to book ).  It is a Bible centered  book that gives a Christian perspective on the topic of disability, and raising special needs children.  A group of special needs parents enrolled in a group on Facebook dissect the book and share experiences on their journeys with their children.  The author has 4 other Christian, special-needs authors as guests, some of whose books I’ve already read.

The first author to be interviewed was Becky Davidson, mom to a teenage boy with autism, president of Rising Above Ministries, co-author of Common Man, Extraordinary Call and a widow.  Becky shared how at one point in her journey she spoke about her mistrust of God after her husband's death.  She was a faithful christian and was a leader of ministries that helped people like herself, living with a disabled child and yet, God took away her husband and left her a widow.  This made me think about what happens when we pray and pray for healing, restoration , good things in our lives and they don't happen?  Where do we stand with God when God doesn't answer our prayers?  Why pray for things at all?

There is a saying, "Hope for the best, expect the worst and you won't be disappointed.”  At some point, I realize our faith has to mature beyond just asking God to give us things that make life easier and better.  It's like children ask for things from their parents because the adults hold the purse strings and are responsible for the care and well being of their children.  But, as children grow, they take responsibility  for their own lives and are able to do things for themselves.  Likewise, our faith starts off by asking God for things to be taken care of but as our faith matures, so must our demands.  We become co-creators with God and have to be willing to accept things that happen in our lives with grace.  Didn't Jesus say, "In life, you will have troubles, but I am with you always".  I don't expect all my problems to go away or be shielded from life's troubles because I found faith.  But, I do expect to have angels, Jesus, God and the heavenly realms to be with me, by my side, in my earthly trials giving me strength, encouragement and support as I walk through the dark valleys. And, there have been many trials in life and having a special needs child is not one of the worst of them.  Just because I found God doesn't mean all my troubles disappear.  There is a Zen Buddhist saying, "Before enlightenment, chop wood, fetch water.  After enlightenment, chop wood, fetch water."

There is a blogger by the name of  Kurt Koontz who shared his experience as a traveler in India and encountered a yogi who said he doesn't worry about the outcome of any situation.He said, "Life is so chaotic and most things are out of our control"  So, through his particular faith he has come to learn to just unconditionally accept what happens as it happens and  to release the ego's desire for wanting things to happen as it wants.    That's a very big thing to achieve mentally and I'm not sure I am a master at that, yet.  But, it's something worth striving for at least for my mental health.

What I have found in faith is a peace from anxiety, a knowing I'm not walking alone but have a spiritual team by my side, both in heaven and on earth, giving me healing, good counsel and encouragement.  That is all I've come to expect from my faith and I am satisfied with it.  I still have worries and fears about the future occasionally but when I do, I know I can go to prayer for comfort and it really does help settle me.  This life is just a short and strange blip in time before we all go to our real home in the afterlife.  Hopefully, it's much nicer and pleasant than this Earth classroom.   Maybe the Soviet communists were right when they said "Religion is the opiate of the masses", and what's wrong with that?  If it helps ease pain, relieve anxiety, gives hope and a sense of belonging and love, I don't see anything wrong with it.

"Invisible Mother"

🔸Invisible Mother 🔸

It all began to make sense, the blank stares, the lack of response, the way
one of the kids will walk into the room while I'm on the phone and ask to be
taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'

Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
the floor, or even standing on my head in the corner, because no one can see
me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
hands, nothing more! Can you fix this? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
What's for dinner?'

I was certain that these were the hands that once held books and the eyes
that studied history, music and literature -but now, they had disappeared
into the peanut butter, never to be seen again. She's going, she's
going, she's gone!

One night, a group of us were having dinner, celebrating the return of a
friend from England . She had just gotten back from a fabulous trip, and she
was going on and on about the hotel she stayed in. I was sitting there,
looking around at the others all put together so well. It was hard not to
compare and feel sorry for myself. I was feeling pretty pathetic, when she
turned to me with a beautifully wrapped package, and said, 'I brought you
this.' It was a book on the great cathedrals of Europe . I wasn't exactly
sure why she'd given it to me until I read her inscription: 'With admiration
for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover
what would become for me, four life-changing truths, after which I could
pattern my work:

1) No one can say who built the great cathedrals - we have no record
of their names.

2) These builders gave their whole lives for a work they would never
see finished.

3) They made great sacrifices and expected no credit.

4) The passion of their building was fuelled by their faith that the
eyes of God saw everything.

A story of legend in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a tiny bird
on the inside of a beam. He was puzzled and asked the man,
'Why are you spending so much time carving that bird into a beam that
will be covered by
the roof. No one will ever see it'

And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost
as if I heard God whispering to me, 'I see you. I see the sacrifices you
make every day, even when no one around you does.

No act of kindness you've done, no sequin you've sewn on, no cupcake you've
baked, no Cub Scout meeting, no last minute errand is too small for me to
notice and smile over. You are building a great cathedral, but you can't see
right now what it will become.

I keep the right perspective when I see myself as a great builder. As one of
the people who show up at a job that they will never see finished, to work
on something that their name will never be on. The writer of the book went
so far as to say that no cathedrals could ever be built in our lifetime
because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for 3
hours and presses all the linens for the table.' That would mean I'd built a
monument to myself. I just want him to want to come home. And then, if there
is anything more to say to his friend, he'd say, 'You're gonna love it
there...'

As mothers, we are building great cathedrals. We cannot be seen if we're
doing it right. And one day, it is very possible that the world will marvel,
not only at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible mothers.

💖
➖Original author: Nicole Johnson

AbilityFirst

Lucas  had the best summer at Ability First going on field trips, making friends, swimming, water balloon fights, dancing and more!  Every day, at least 4 or 5 kids greeted him with a loud and enthusiastic "Hi, Lucas!!!"  This brought tears to my eyes.  Words can't describe how grateful my heart is to all the staff and counselors at Ability First.  Looking forward to going back again next summer!