Friday, March 01, 2013

Special Needs Spotlight: Sam





Hello all!  We are the Weinreb family; Todd, Kim, Sam and Abby and we currently live in Georgia.  We are not originally from Georgia, but are transplants from Utah.  The South is great and there really is true Southern Hospitality here.  Todd & I met in SLC, Utah in April of 1995 and married in January of 1996.  We waited a couple of years to begin our family and were thrilled to learn I was pregnant in 1998.  My due date was Father's Day, June 16, 1999.  We were prepared in every way: nursery decorated in Noah's Ark, crib was set up, carseat was purchased, little tiny clothes washed and ready, diapers stockpiled.  We were excited to meet him or her… we like surprises!  We just weren't really prepared for the BIG surprise that was coming our way.  

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Miggy:  Kim, you are one of my few moms who has a special needs teen.  I know it's been a while, but can you take me back to the day you found out that things were not 'right' with Sam, so-to-speak?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel  now?

Kim:  On May 18, 1999, during my 8th month appointment with my OB, I asked her why my stomach looked so lopsided.  I thought maybe the baby was lying transverse but she thought it was head-down but she didn't know why I was lopsided so she sent me next door to get a quick positioning ultrasound.  The tech did her job then asked us to go wait in the doctor's office and it didn't dawn on me that that was strange.  My husband was with me, thankfully, as we waited.  Dr. Bowman came in, closed the door and said, "There's a problem with your baby.  The head is too big for it's body.  It might be hydrocephalus so you'll probably need a C-section and you need to go see the specialists at LDS hospital."  What???  Tears started coming and the fear was setting in.  We went home and just sat there, staring into space.  The internet was still fairly new but we researched hydrocephalus and thought that we could handle it.  We managed to get an appointment with Dr. T. Flint Porter and as he was doing the ultrasound he said, "Well, theres a problem with your baby's brain but I don't know what it is."  At that point, a genetic counselor came in and discussed a couple of genetic problems that could be the culprit but no one knew.  They wanted to do a chorocentisis (taking blood from the umbilical cord) but the second doctor was concerned about other bleeding issues so that's when it was decided that I get a MRI.  I took a couple of valium, laid as still as possible and got the MRI.  We met with a big group of specialists:  neonatologist, maternal-fetal medicine docs, radiologist, our dear friend who is a nurse and us.   It was determined that this baby had had a massive stroke at about 5-6 months gestation.  Pretty darn rare, so rare in fact that Sam was in a study through the National Institute of Health.  Awesome!  Samuel Randy was was born on a beautiful spring day, May 27, 1999 via C-section, 3 1/2 weeks early.  Sam spent 1 week at PCMC NICU and then we were finally able to bring him home.  We truly felt like one of the lucky families in the NICU, we got to bring him home where as some never did.   I felt like I had done everything right… I took my vitamins, exercised, went to all my pre-natal appointments, etc., so how did this happen?  No one knew and we still don't know.  That's how life goes.  PS…it turns out that my uterus is heart-shaped and that's why my belly was lopsided.  Thank goodness it was or our experience could have been a lot worse.

Sam's current diagnoses:  intra-uterine stroke, hemi-paresis, CP, seizures, vision issues, global developmental delay, mild autism, shunted hydrocephalus, behavior issues.  Is that enough?  I think that's all I got! 


As a new parent of any baby, you feel overwhelmed and scared but you get into a groove and figure things out.  There is a point at which I had to grieve for the child that I was "supposed" to have.  I had to learn what my "normal" was and get on with it.   I was busier than "typical" moms… shunt surgery at one month, Early Intervention home visits from OT, PT & nurses, yearly Neonatal Follow-up Program visits, etc.  It was all my new "normal."   I often said to myself, "It will get easier as he gets older."  I now know better!!  Sam has been in weekly therapy from the day he was born and we still continue!  After nearly 14 years, the feelings are quite a bit different.  You have to come to a point where you accept the fact that your child will never date, never go to college, never marry, never have children and these are hard things for a mom to accept.  You want your child to have everything in life and maybe, just maybe, what they have is enough.  


Miggy:  There are a lot of us newbie special needs moms that have settled into a 'new normal' but who still have so many milestones ahead like school and puberty to name a couple.  :)  Since you are further down the road than a lot of the moms I interview, can you talk a little about the ups and downs over the years?  Have there been some things that surprised you, either for better or for worse?

Kim:  Oh boy!  There are so many things that didn't even cross my mind as I held that sweet baby for the first time.  Many of the challenges that came along were more than I was really prepared for!  Sam attended public school from Kindergarten thru the very beginning of 4th grade.  In the beginning, we really didn't have too many issues with getting him what he needed thru his IEP but as he got older, it seemed services were harder to get.  For us, we didn't want Sam to go to public middle school… middle school is tough for typical kids but when you add brain injury to that, I just couldn't do it and so we began our journey to look for a private special needs school.  I learned many things over the years about IEPs, parents rights, etc. in the public school system and it was not working for us anymore.  Any school I called was only able to handle Learning Disabilities and Sam was far more involved than that.  We were blessed to find a wonderful private school for Sam (Clearwater Academy)  that meets all of his needs.  It truly changed our life!  We went from going to therapies 6x/week to one time/week because all of the therapies (except for PT) were done during the school day.  I'm not going to lie, you really need to put on the battle gear when it comes to your child's education.  Mama Bear will come out and you have to fight for your child!

Sam is smack dab in the middle of puberty.  There is nothing like having a damaged brain soaked in testosterone!   We've had talks about that changes in his body and he gets it, for the most part, but we have yet to discuss the birds & the bees.  How do you tell a teenager about all that when he's functioning as a very young child?  That's something I didn't think about early on!!  What's next you ask?  Well, to be frank, we've already had to deal with wet dreams & masturbation.  Can I use those words here?  These kids have all the same feelings as you and I but they have no comprehension about appropriateness.  It is a cuh-razy time of life!!  You need to really deal with each issue that comes up as best you can.  There is no right way of doing this and you do your very best.   


Miggy:  Explain how Sam's specific special need affects your day-to-day life?

Kim:  Sam is fairly functional but still requires a lot of care.  Due to the stroke, his right hand is not very functional…he can't tie his shoes, he can't ride a bike, he can't button a button or snap a snap, he can't do most two-handed tasks.  I still have to help him bathe, dress, put on braces, brush teeth, shave his face (seems awfully young doesn't it?!)  and wipe his bottom.  Say what?!  Again, it is what it is and as a mom, you just do it.  Sam also has some behavior issues that we deal with and that can get exhausting.  I am 4'11" and 90 lbs. and at this point, Sam is bigger than me and that can get scary at times.  He's been better thanks to meds but there is a trade-off…weight gain or anger issues?  I'll take weight gain.  Sam is very eager to help cook and do somethings on his own but he is still very dependent on us & always will be.



Miggy:  What are your biggest concerns for Sam?

Kim:  Right now, our biggest concerns are for Sam's future.  Where will he live?  Will he live with us forever?  Will he get a job?  Does he qualify for the Medicaid Waiver?  When do we need to apply for SSI?  Who will manage him after we are gone?  These concerns are all up front for us right now and it's a challenge!  Just today I spoke with a group that helps adults 18+ with daily activities, work programs, community services, etc.  The lady also suggested that I call about the Medicaid Waiver that helps pay for these services so I did that this morning and it could take years to qualify so even though these services don't start until he's 18, I have to start now at 14.  Another important thing that parents don't often think about in regards to their kids future is the need for a Special Needs Trust.  if your child has any sort of assistance (Medicaid, SSI, etc.) and they inherit money from grandparents or a long lost cousin, they could lose their benefits.  You DO NOT want that to happen!  Please, add talking to a qualified lawyer to your list of things to do.  And keep everything!  All medical paperwork, evals, etc., in a file folder…you just never know when you'll need it!  Keep all this in mind because it's coming fast!  As they say, the days are long and the years are short.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Kim:  When he was about 2 or 3, he was still getting the hang of walking and we were out w/some friends getting some frozen yogurt.  Sam tried to run and he fell down and some stranger picked him up, felt his head and said, "He's got a huge bump on his head!"  We replied, "Oh, that's his shunt, thank you."  His reply, "Are you sure?"  Yeah, we're pretty sure we know what the huge bump on his head is from.


Miggy:  How can people best approach or respond to Sam? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kim:  Some of the things that are endearing when it comes to Sam were cute at 8 but not so much at 14.  Sam is super friendly, loves to introduce himself to others, have conversations with strangers, etc.  However, it will get to the point where it may be creepy… most people in our town know Sam and are super good with him and for those who don't know him, they can tell he's not "typical" and are sweet to him.  When Sam asks about someone he sees who is "different" I always try to make sure he knows that everyone has different challenges in their life and I remind him that he can't use righty well or that he wears a brace.  Everyone has something to deal with and everyone is special.


Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son?

Kim:  Abby, 10, is Sam's little sister.  She is 3 1/2 years younger than Sam but she has certainly taken on the role of "big sister."  She is very patient and kind to Sam and they do get along very well.  It's often a challenge for her to have to explain to others about Sam and sometimes others have been mean saying that she has a weird family.  That's how some people are but I told her to just move past it.  Abby has certainly learned compassion and patience when it comes to others.  She is not afraid to engage or help others who are different.  Abby grew up in waiting rooms and that is common for siblings but it's important to remember that they need time away as well.  It was very important to us to NOT have the kids in the same school.  I didn't want Abby to be known as "Sam's sister," I wanted her to be Abby and I have found that it works so much better.  I have recommended this to other parents.  It's tough to be a sibling, Abby's life revolves around what's going on with Sam and that is tough to deal with.  There will come a time when she'll need to talk to a professional about her feelings or perhaps a sibling support group.  There are many resources for siblings and they need to be utilized.  Siblings can get lost in the shuffle and that's another thing I have to be vigilant about; making sure Abby's needs are met.


Miggy:  In your email you told me you know that you were prepared to be Sam's mom, can you tell us a little about that preparation or what you feel some of the biggest lessons you've learned since  becoming Sam's mom?

Kim:  When I've looked back on my life, I've seen the Lord's hand in guiding me and preparing me for Sam.  In high school I wanted to be a nurse so I took classes and volunteered in the hospital and at the fire department, all very cool!  I then went to a 2-year college where my major was pre-nursing and I took all sorts of great classes; biology, anatomy, physiology & I was the cadaver lab assistant.  I next moved on to the University of Utah where I took more pre-nursing classes, volunteered in the local ER every week, rode along with the fire dept, became an EMT, and was employed as an aide to adults with cerebral palsy.  I distinctly remember walking down the hall at the place that I worked praying in my heart, "Lord, please don't give me a child with special needs, I just don't think I could handle it."  After leaving UCP (United Cerebral Palsy), I worked at a home health agency where I learned about medical equipment, insurance, Medicaid, home health, etc.  However, I couldn't for the life of me, get into nursing school!  What's the deal?  I've done everything possible to prepare for that and after 4 times, I kind of gave up.  All of these experiences helped prepare me to take care of Sam.  I wasn't in the dark while talking to doctors about his condition, I understood how to talk to insurance companies about coverage and claims (a full-time job), I knew what was and was not covered under Medicaid.  I feel very blessed to know that I was prepared for Sam and that he belonged to our family.

I have learned that even though Sam isn't into the "typical" teen stuff…cell phones, video games, etc., his "things" are just as important to him.  Sam is still into watching Thomas the Tank Engine, Sesame Street and other shows that are way too young for him but they are important to him.  He's also REALLY into game shows, primarily The Price is Right and for some strange reason, he loves watching the news…local channels and his new fav, Face the Nation.  


One day as we were driving he says, "Mom, do we have church on Sunday?"  
"Yes, it's Stake Conference."
"I can't go.  Face the Nation is on and Bob Schieffer needs me."
Well, I guess I can't argue with that.

I now work on trying to make Sam's interests special so a few of the things I have done are:  got autographed photos from Bob Barker, Drew Carey, Rich Fields (TPIR announcer), Bob Schieffer and local news guys.  One year I even managed to get us to a taping of The Price is Right (photo above!).  It was an awesome experience and all because I am willing to ask.  The worst they could do is say no.  I want to make sure his life is as happy as I can make it and if that takes sending an email to Ken Jennings (the winningest player on Jeopardy) to request a photo, then I'll do it.  I want Sam to know that I cared enough to make his life special.  

I have learned that I am very involved!  Team Mom for our Miracle League baseball team, Special Pops Tennis, Special Olympics, Autism Walks, Parent leader at his school, run a support group (Georgia Therapy Moms), set up a special needs resource fair for our town.  I really had no idea what I was capable of and what I would be able to accomplish.  If I don't get him involved, no one will.  We are our kids best advocates and no one, NO ONE knows our kids better than us.

All these kids have something special to give & share and it's our job as parents to find that special gift and help them share it with the world.  I believe Sam's special gift is to love unconditionally and he does that with everyone he comes in contact with.  It's a very special gift.

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Kim thank you SO much for this amazing spotlight and for sharing your sweet Sam with us.  He's a sweetheart!  Plus I love your candor (yes you can certainly say masturbation!)  I don't know where to start with all the wonderful things Kim said... I love when she said, "All kids have something special to share and it's our job to help them share it with the world."  Also, I got teary eyed at the end of the first question when she said, "You want your child to have everything in life and maybe, just maybe, what they have is enough."  Yes.  Maybe it is.  Not to mention all the really smart advice about talking to a lawyer and thinking and planning for the future now!  Good stuff.  Thanks again Kim... from your first email I loved your energy and attitude, and this spotlight didn't disappoint.  Read more about Kim and her family on their blog here.  

If you or someone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com.  In addition to parents of special needs children, I'd love to talk to parents who have child with special needs who is now an adult, as well as siblings or anyone else with a unique perspective.

Have a great weekend!  

10 comments:

  1. Thanks for sharing these special families and their children with us Miggy.

    I am always so impressed with these parents and their fantastic attitude and strength x

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  2. chris reynolds9:00 AM

    I have known Sam and Kim off and on over the years, and I Love that kid! He has always shown up on the perfect day in my life where I needed perspective. He is so joyous, and a great reminder that the things that make us mad, sad, and even complicated just do not really matter that much! He is full on and lives life to the fullest! Thanks for sharing this post.

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  3. Anonymous10:13 AM

    Such an inspiring family. Seriously, big props to Sam's fam and of course to Sam himself (I jumped to the blog & read some of the hysterical things Sam & his sister say....check that out, everyone). I agree with the issue of sibs...super-important and often-overlooked. In our family, we have found it best to have all our kids at the same school for MY ease & peace of mind, but there is a complete ban (actually instituted by our wonderful principal, not by me, she thought of it first) on disabled sib's interaction with his typical sibs' classrooms - which goes along with what Kim says above.

    Another issue this profile raises for me (and that I have no answers for, I am just thinking about it) - what about this issue of "kid disability = parent life." What are the benefits of parents jumping in and joining or starting organizations, groups, support systems, etc? What are the costs? What are the benefits of NOT centering activities around the disability? (I am probably not saying any of this well, and i do NOT mean to imply any sort of judgment, because we all do the best we can for our kids...) But I am curious about what others think, who have gone either direction or tried to straddle the middle? We have 1 kid with autism, but are NOT active with autism organizations (and yes, my child is severely disabled). I have not made a conscious choice to avoid organizational involvement; it just has not been a priority for us. (I am a room mom at school, though not disabled child's; I have been his Sunday School teacher...I don't know?) Mistake? Not? I would love to hear what others think.

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    1. I think you do what works for your family. You also don't want to overburden yourselves with things/events/meetings that aren't important. I never did support groups, I didn't talk w/other parents about disabilities, I kept to myself and did my own thing. It wasn't until we moved that I felt a desire to improve our community; not much available at all. You are right, your life already revolves around the "disability" and you don't have to go out & search for it. Not everyone wants to go to support groups. We limit sports to baseball at this point, a few weeks in the spring & fall. We'll do the Autism Walk w/Sam's school team even though autism is not our main issue. Balance is hard to find but that's the goal we aim for. I'm happy to chat w/you anytime! kim.weinreb@gmail.com

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  4. pallavi10:22 AM

    Sam and his family are so wonderful...Mothers are the superheros of the world!

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  5. Kim, you sound like an amazing mom! Loved this spotlight.

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  6. This was great. I love how honest and upfront she is. Very touching, and a beautiful family!

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  7. Such an inspirational profile! Kim, you are an amazing mother. Your introspection is humbling. All the best to you ...

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  8. Ok. It might seem odd that the one thing I choose to comment on is talking to her son about sex BUT when I was in say kindergarten I apparently started asking my mom questions about boys and girls and bodies so my mom read "Where Did I Come From?" to me. I remember as a child it wasn't weird or embarrassing, it seemed to make sense and cover all the basics.
    http://www.amazon.com/Where-Did-I-Come-From/dp/0818402539/ref=rec_dp_2

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    1. I do have a good book to share, it's just the timing of it all. Parenting is so fun! Thanks for the book info.

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