Happy Mother's Day

Happy Mother's Day!  For some, it's not so happy, so I send an extra prayer and lots of love.  There are those who struggle with infertility...whose children earned their angel wings much too soon...whose journey led them to "Holland" vs their dream trip to Italy: 

Welcome to Holland

 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Let me talk to you about my Mom.  She also made the trip to "Holland", many years ago.  Before there were IEPs and support groups and online information.  My parents had no reason to think I was deaf.  It wasn't until I was at the age where I should have started to speak, they became suspicious that something wasn't quite 100%.   And, their journey began. 

I didn't help much, let me tell you!  I had them fooled because I could lipread at a very early age. There were times when I was responsive, and they thought, "no, she seems ok".  Other days when they couldn't get my attention, and the concern would surface again.  After two and a half years of doctors and searching and inconclusive tests, they finally had a diagnosis.  Their daughter was deaf.  I got my first hearing aid when I was five years old. To this day, I'm not sure what went through her mind.  I do know she made up her mind I was going to have the same responsibilities and discipline as my brothers.  She knew of other children with disabilities who were spoiled and she was NOT going to allow that to happen to me.  Thank you, Mom - seriously.

I went to pubic schools, learned to speak well and did anything I set my mind too.  I took music lessons, played softball, became a lifeguard, babysat, and was a typical kid for the most part.  If she had a penny for every time she repeated something or corrected the way I pronounced something, she'd be a very rich woman.  And, all the while doing this, I do not remember her ever losing her patience with me.  She's also a real prayer warrior.  God blessed me with the very best Mom ever!  Happy Mother's Day!  Love you

What do I do?

As I'm wrapping up my week's blogging on being deaf, you may be asking yourself, well, what are some do's and don't's when I meet someone who is deaf?  Let me share what I've learned over the years and from my deaf friends.

First, it's up to me to share that I am deaf.  It's not called the "invisible handicap" for nothing.  If you were to meet me, my hair covers my one hearing aid.  Most likely, you're not going to see me signing and my voice is not significantly "deaf".  So, my normal introduction when meeting someone new is to say, "I wear a hearing aid.  I need to see your face when you speak to me.  Otherwise, please, just be yourself. If I can't hear you, I will tell you.". 

Funnily enough, the first thing that comes out of THEIR mouths is an apology!  You have absolutely nothing to apologize for!  I have never, ever understood this response.  It's not their fault I'm deaf.  They didn't do anything wrong or offensive...  If someone can enlighten me, I'd be grateful!

Second, please know, I'm going to do everything I can and give you my full concentration in order to understand you.  Also, so you don't have to repeat yourself ten thousand bazillion times which will frustrate both of us.  However, if I really cannot understand you no matter what (I don't think this has ever happened to me), a piece of paper and pencil works good. Knowing that I'm trying to understand, please, be patient with me.  Getting angry with me over something I have no control over doesn't help anything.   You wouldn't yell at a blind person for not being able to see something would you?

Third, just because I lipread very well, doesn't mean all deaf people do.  This is where I feel strongly that a deaf person needs to share what works for them.  If someone does lipread, please, don't cover your mouth with your hand!  Don't be looking down at your phone or what you are writing.  I'm more than happy to be patient until you're finished.  If you're standing in front of a bright window, I need to move because it's more difficult to see your face.  Don't even get me started on mustaches which are the bane of my existence!  Lipreading through hair is not my favorite past time!  lol 

Fourth, you don't need to over-enunciate your words, yell or invade my personal body space in order for me to understand you.  Believe me, I've had all three just in the last week alone.  Talk to me like you would anyone else, just make sure I can see you.  

Fifth, don't treat me like I'm "dumb".  "Deaf and dumb" was created to refer to someone's ability to speak, not their intelligence.  I've had people tell me I shouldn't be a Mom or drive.  REALLY?  My driving record is perfect with not one ticket.  I was a foster parent for many years with five of my own kids.  Not one child - ever - was hurt or neglected due to my lack of hearing.  My kids would probably say they got away with less than their peers because they were rarely out of my sight!!  

I'd love to answer any more questions about deafness or help anyone who has recently experienced a hearing loss.  I'm very sure that this topic will come up again.  

Thanks for stopping by!  Stay tuned for next week's topic...of which I am not sure of yet!  lol

More thoughts on Deafness

Since I am new to blogging, I have started sharing the link to this blog on my Facebook page.  Well, yesterday, I received a number of comments from my deaf friends - mostly positive, thank you!   However, most of the comments were made on my Facebook page vs. this one.  Please, if you have comments to share, post them here, and not on my Facebook page.  Thanks!

Something came to mind since sharing my last post.   My youngest son, Ethan, is adopted.  He was severely abused when he was two months old.  He was hospitalized for a month, when our family received a call asking if we would be his foster family.  When a family receives a phone call, they are also given a description of the child, including age, gender, race (I always told them, they're a child.  I couldn't care less if their skin was black, white, yellow or purple), and any medical/behavioral issues.  Ethan came with a lengthy list of medical needs.  They forgot one medical issue that was really significant to me - he was blind from the abuse.  Fortunately, I didn't find out until I had already seen him for the first time in the hospital.  It took one look for me to fall hard for this little boy.  But, let me tell ya, it was a shock to my system.  Why, you ask?

Well, being deaf, I am extremely visually oriented.  When one sense is compromised, other senses make up for it.  I asked myself if I was going to be able to readjust my thinking and provide the help that this little boy who needed me.  My hearing wasn't going to change.  If he asked me what a noise was, I wasn't going to be able to give him an accurate answer.  Why, Lord, did you grace me with a child who was blind?  Don't you know that my "expertise" lies with deaf children, not blind children?  God's sense of humor was eluding me that day!  Well, I adapted, took some workshops, talked to people, made lots of mistakes and he's doing just fine.  His blindness bothers him not a whit and his philosophy to having a deaf mother is: "you see for me, I hear for you, and we make a good team".   Can you see why I love him so much?  Thank you, Lord for Your grace for the moment and providing all that we need - even when we don't even realize there is a need.  

I am Deaf and not ashamed to say so!

Yesterday, I promised that I would write today's blog on my deafness.  I rarely make promises, and when I do, I try very hard to keep them.   

A friend had taken note when I shared my first blog, asking, "you described everything about yourself, but the fact that you are deaf".  He did have a point.  I didn't think about it.  While I've been deaf my entire life, and, I'm sure, it plays a large part in defining the type of person I am, it doesn't consume my every waking thought.  

Now, before I go any further, I KNOW I am going to offend some of my deaf friends.  I know that many of my hearing friends really won't "get it".  These are my thoughts on my deafness - right or wrong.  I'd love to hear your comments, but, again, please be kind. 

For all intents and purposes, I am deaf.  My left ear has no functional hearing and, I've often said, is only on my head for decorative purposes!  My right ear has a severe loss and I wear a hearing aid in that ear.  My friends know to walk on my right side when we're out, or sit on that side when we're in a restaurant.  Without my hearing aid, I only hear very loud sounds.  I have no sense of where sounds are coming from either.   

There are some advantages to this!  I don't hear gossip.  I don't hear negativity.  I sleep through the night without being woken by traffic, sirens, dogs barking and other noises.  I have often asked myself how hearing people get enough rest with all the noise they must filter out.   I tease my family and say they are the ones who have a "disability", not me since I can control when I hear, and when I don't.  Really, the only time my hearing aid comes out is when I shower and when I go to bed.  I cannot sleep with my aid in, period.   

On the other hand, I expend more energy than a hearing person communicating.  It takes a lot of concentration to understand someone.  I need to lipread and can't write notes and watch someone speaking at the same time.  I have to educate every new person I meet, to please look at me when they speak.  Aside from looking at me, I ask them to please, be comfortable and speak normally - no need to shout or over-enunciate their words.  If I can't hear you, I will tell you!  You will know if I can't hear you because my answer will be completely "off the wall".  Case in point.  If someone asks me my name and I answer, "fine", you can pretty much guess I didn't understand you!    I have a pretty good sense of humor about it all.  While I can talk on the phone, again, it takes a lot of concentration and patience/repetition from the person on the other end.  

But, this is who I am.  If you can't deal with the little extra courtesy it requires to speak to me, I'm not going to bother.  Remember, it takes me just as much, if not more, effort to understand you. You can walk away from it after our conversation is done.  I can't.  My kids are the ones who get offended when people are rude.  Me?  I don't hear them.  So, whatever.  

Do I want a cochlear implant?  NO!  I can function with my hearing aid just fine.  Do my kids sign?  Again, no.  Heather knows some, but it's not used much in my house.  Ethan tells Steve and I to stop waving our hands around (this coming from my blind kid!).  I do wish I had taught them more and promised my kids that their children WILL learn sign language from their grandmother.  Do I care if others have a cochlear implant?  No.  It's a very personal decision for each individual.  

Now, if you were to meet some of my Deaf friends, they would be appalled.  Cochlear implants are not necessary because nothing needs to be fixed.  It's not their problem if YOU can't talk to THEM.  You should learn ASL (American Sign Language) - which is not the same as signing English.  ASL is a completely different, recognized language.  I've been roundly criticized for not attending a church with an interpreter.  For not attending deaf clubs.  For not marrying a deaf man.  Shock!  This is where I say, my deafness isn't what completely defines me.  I choose my friends for their hearts, not the fact of whether or not they can hear.  I love my husband.  The fact that he's hearing means he can hear.  So, he listened for our kids when they were babies at night and woke me when they needed attention.  We've been married for more than 25 years and if someone were to pay him a nickel for every time he patiently repeated or signed something for me, he'd be a very rich man!

I could spend weeks blogging about this.  There are heated debates about the use of ASL vs speech, the use of cochlear implants, schools for the deaf vs public schools.  I could go on.  I think it really boils down to each family making the best decision for them.  No, my parents didn't sign and I went to a public school and wore hearing aids.  I adapted.  My parents and brothers adapted too.  It just was what it was and no one gave much thought about it.  I went to Gallaudet University because I did want to be involved with Deaf Culture and meet more deaf people.  I made some fabulous friends there that I'm still in touch with today.  But, I refuse to lock myself in a hearing world, nor will I totally embrace the deaf world.  That's not who I am.    

Adoption Anniversary

Well, I guess this will be a successful blog.  Especially since one of my friends almost allowed his "inner troll" (his words, not mine!) out yesterday after reading my first post.  While I listed the various componets that made up our diverse family, I absolutely failed to mention that I am the one in my family who is deaf.  Nothing that I am ashamed of, just didn't think to mention it.  I'm saving more on this topic for tomorrow's post.  =)

Today, I have something special to write about.  It's the 24th anniversary of Sean's, my oldest son, arrival in our family.  Let me share his story.  We could definitely see God at work during his placement with us.

Steve and I were foster parents for many years.  Sean was our first "long-term" placement.  He was with another foster family, until they found out through testing, that he was profoundly deaf.  They promptly wrote a letter asking the agency to remove him as soon as possible.  They didn't feel they could handle his deafness.  I was currently a foster care social worker in the same agency, and it was well known I was deaf!  After a futile search to find another family, they approached us and asked if we would consider fostering him.  We didn't have any children at the time and both of us were employed.  We were agreeable as long as my hours could be reduced to no more than three days per week. 

Anyone who knows me, knows my aversion to day care.  I make no judgements.  Every family has to do what is right for them.  But, Steve and I wanted to avoid this scenario for our family.  Putting Sean somewhere else five days per week didn't constitute caring for him in my book.  Three days per week with a babysitter was "tolerable".   Should I mention that we found out we were pregnant with Heather just six weeks later.  Part-time went down to resigning at the end of the year.  I'm very fortunate that Steve has worked so hard over the years to allow me to stay home and care for my family.  I know many women who don't have this priviledge and my heart goes out to them.

The first "miracle" was the agency's agreement to allow me to adjust my hours to part-time.  This had never been done before and they weren't sure if it could be a successful endeavor.  There are many requirements that have to be met for each child in care from regular visits, written reports, medical appointments, court appearances, etc.  Fortunately, I was able to reduce my caseload and show them how it could be done part-time.  So, we made plans for him to move to our house and May 5, 1989 it was.  Yahoo!

The second "miracle" had to do with his hearing.  From the very beginning, I was skeptical of his "profound deafness" diagnosis.  I have a severe loss in my right ear, and a profound loss in my left.  He was far too responsive to noise for a profoundly deaf child.  Especially a child who didn't even have hearing aids.  Two months later, we followed up with the audiologist only to discover his hearing was perfectly normal. 

I was shocked at this follow up appointment, so let me explain.  When a hearing test is done, the volume of sounds used to test a profound loss would be considered pain for someone with normal hearing.  Sean was too bright and alert to ignore that level of noise.  How anyone ever came up with a "profoundly deaf" prognosis was a big mystery, unless you give it to God.  I've often told Sean that he was meant to be in our family.  If it wasn't for that mistaken diagnosis, he would have likely stayed with the first foster family and eventually adopted by them or someone else.  God had other plans and, boy, am I glad he did!

The third "miracle" was that we got to keep him and make him a forever Simons'.  Someone, who knew my crazy husband well, said to us after we adopted him, that he was going to grow up and sue our state governement for placing him in such a nutty family!  lol  His biological father saw him once at a medical appointment.  He was very kind to Sean, but also very blunt.  He said he had no real ability to care for him since he had another child and was already working multiple jobs to make ends meet.  He signed away his parental rights without ever seeing him again.  His biological mother never saw him once...not.one.time.  =(

Back in the early 1990's, biological parents were given many more opportunities to regain custody of their children.  Going to court and being granted "six more months" was very common in my experience as a social worker.  But, it meant that, while the biological parents were given more time, the children got older.  They were less likely to stay with their foster families and less likely to be adopted.  They experienced frequent moves which resulted in attachment disorders.  It was a vicious cycle with the children paying the highest price.  For five and a half years, his biological mother went to court and asked for more time...and never visited.  The only way Steve and I were able to handle this long wait was the grace of God and knowing if she never visited him, there was a slim to none chance he would ever return home.  We weren't looking to take away her son, but he deserved a "forever family".  Finally, the agency had enough "weight" to ask the court to involuntarily terminate her rights.  We had a big ol' party after we went to court on September 16, 1994.

God blessed us with you, Sean and I'm so glad he did.  May 5th will always be one of my favorite days of the year in memory of that handsome little boy with the huge brown eyes. 

I love you more! 

Welcome

Welcome to the Simons' family - 

I hope you'll join my journey into the world of blogging.  As the title suggests, we're a very diverse family!   In our family, we have members who are: deaf, blind, African-American, Caucasian, ADD/ADHD, Shaken Baby Syndrome (SBS),traumatic brain injury (TBI),  central auditory processing disorder, RSD/chronic pain, foster care, adoption and a few other things.  That may sound like a lot.  But, God has blessed us with His grace for each day and a wonderful sense of humor!  Let me introduce my family...

Steve - my wonderful husband of 25+ years who teaches social studies, coaches soccer and love computer games.

Sean - my oldest son who was adopted.  He's blessed our home for almost 24 years, gracing us with humor, a very high energy level, and a wonderful wife and two daughters.

Heather - my oldest biological daughter who works with children every day.  If you need information on a child's development, or what your child should be doing at their young age, she's your person.  She's loving, funny and dating a very nice young man (I need to get permission before sharing names!).

Michele - my second oldest biological daughter.  She was on her journey to accomplishing her lifelong dream of being a nurse, when she sustained a neck injury last summer (2012).  She has dealt with more medical issues this past year with grace, humor and a few tears than most do in a lifetime.  We pray she will still realize her dream, but also know that God may have other plans for her life.  She's also dating a very nice young man!  Dating and our adult children could be a topic in the coming months!

Matt - my youngest biological son who is about to graduate high school.  He's a whiz at multi-media, goofy and kind-hearted.  We're still working on post-graduate plans...

Ethan - my goofy, funny, stubborn, exasperating love bug, also known as "Boo Bear".  Ethan is our youngest who was also adopted.  He was almost killed by his biological father after being shaken as an infant.  We were lucky enough to foster him and even more fortunate to adopt him.  He sustained a traumatic brain injury (TBI) as a result of the abuse and is legally blind.  You'll be hearing alot from my funny little man.

Then, there's me - Sandy, aka "Mom", who with the help of God keeps the family glued together.  I was a foster care social worker for medical children which set us on the path of fostering children.  I love to read, write, crochet, make cards and scrapbook.  I've been a Christian for most of my life and am still learning and walking with God.  

So, that's the reason for my subtitle, "insights from a diverse family".  We're diverse all right.  So much, that I wasn't even sure how to blog for the longest time because there are so many topics I could focus on.  So, I'm just going to focus on each day as it comes

Please, ask questions, comment, share our story.   Please, be honest, but be kind!  There's enough negativity in the world, don't you think?

Have a blessed day!