My Family

My Family
Here we all are!

Monday, August 27, 2012

Sleep Biking?

Well, what do you know.  Apparently Callie was learning to ride a bike in her sleep.  I haven't even seen her sit on a bike this summer.  I'm thinking it's been 2 years since we had a bike with training wheels on it for her.  We've not encouraged it as I don't trust her iffy implulse control to keep her safe.  If she got out of the house and found a bike and just took off - oh, boy head between my knees - breathe just breathe.

She jumped on Ella's bike and just came down the driveway.  We were standing towards the end of the driveway and it didn't even register who was riding the bike because she'd just never done that before.  Jacob excitedly starts yelling, "Callie's riding a bike - Callie's riding a bike."  Thankfully he also road by her side.  She wanted to ride down the front grassy hill in our yard and I told Jacob to tell her how to us the brakes.  Then I got my camera out.  It was only after filming her successful and very controlled ride that I realized she didn't have a helmet on.  Probably not the best idea.  I was still so in shock I just wasn't thinking.

She road around and around our cul-de-sac with Jacob, then they went further down the street and Jacob started yelling at her not to go down our hill.  For those of you who don't know we have a pretty steep hill at the beginning of our street.  I started running as fast as my flip flops would let me go, but, amazingly - she had a controlled ride and stopped before charging into the busier street at the bottom of our hill.

Sometimes I think I shouldn't be amazed at what Callie does anymore.  Then I have to look at her file as I did this past week to remind myself of birth facts, wasn't there so it just doesn't stick.  The school paperwork asked for her apgar scores.  I looked and couldn't find them.  Then I looked again and the words Full Code slapped me in the face.  I'm sure I knew this, but I'd forgotten.  Callie was, well basically, born dead.  Callie - who learned to speak, walk, read, do math, write, conquered her fear of rollercoasters and darn it - rode a bike.  She also learned to love, laugh and gives us more joy than we can count as well as challenging every parenting skill we've developed over 31 years.  I've said it once and I'll say it again - Callie is a miracle!  But, no, it is not the end of the story.  There will be more, yes, much more.

Monday, August 20, 2012

KISS - Keep It Simple Silly

Yesterday we had a couple kids over for play dates.  Jacob's friend had never been to our house and all our kids were home.  I always feel a little sorry for anyone who hasn't been fully warned about our family before entering our abode.  It's a lot to take in and not be freaked out.  When you live it every day, you just forget how it must look coming from "normal", whatever that means.

I asked Ella what she tells her friends before they come over.  She said, "I tell them some of the kids have disabilities and if they say something you don't understand, just ask me and I'll interpret."  I'm not sure Jacob is yet aware that his friends might not have experience with special needs kids and so aren't necessarily being "warned".

Jacob's friend asked a few questions which we answered as succinctly as possible.  It's kind of like if a little kid asks you say how hamburgers are made and you tell them about raising cows.  Too much info. is just too much info.  My theory is to just answer the question that was asked and no more.  Every kid that walks into my house doesn't need to know the gory details of what happened to each of my kids to create the intricately made people that they are.

Someday when they're older and if the friends have been around for quite some time, then perhaps a discussion about where they've come from will be warranted, but for now my motto is - keep it simple silly.

Friday, August 17, 2012

Medicaid from Inside the System

Our first job after college as "houseparents" in a group home convinced us that we wanted to adopt a special needs child.  The emotional stability the adults who had spent most of their time with their families possessed compared to the adults who had grown up in the institution was very obvious.  Thankfully we live in a state where we do not place children or adults in institutions and haven't since the 90's.  This is not the case nation wide and one of the many reasons I love Minnesota.

Much of this deinstitutionalization was accomplished due to Medicaid waivers for the disabled which is in grave danger of huge cuts as well as the end to the current right to coverage, i.e. entitlement, due to disability depending, in part, on the outcome of the next election.  In 1998 nearly 44% of those on Medicaid were the disabled and blind. 
The $800 billion in cuts, that has been proposed by one candidate, is a frightening prospective for parents like us.

 Our family is incredibly fortunate to have an amazing support system in place, which is not the case for the many parents who are raising disabled children.   Our support system is in place, partly,  due to the financial support we have at our disposal.  If that is taken away, it's likely we'd lose many of our support people as they have families of their own to support and would be unable to "volunteer"  their time.

Two of our children are on Medicaid waivers and three others receive significant financial assistance via state grants and medical assistance.  Being pro-life is an expensive long term stance, not a one time expense.  Special needs kids require tax money, lots of tax money, to raise, educate, "therapize" and in general, keep alive.  Shannon's specialized liquid nutrition costs more than $1500 per month - there is no way we could pay for that ourselves.  We rely on medical assistance to cover that cost as well as the many other expensive medical supplies that she needs.

Medicaid waivers were used to provide community based services for DD (developmentally delayed) children and adults.  This is how deinstitutionalization was made possible.  Most of the DD population requires a variety of support to stay in a community setting and many of the people who transitioned out of institutions were and are wards of the state.  I know at least two of our adult children's biological parents were told to put their children away and try again if they wanted a "normal" child.

Now, at least in Minnesota, parents are expected to raise and care for their own children no matter what their needs are.  Don't misunderstand, I obviously strongly believe that this is how it should be, but there are many many children surviving today that never would have survived 15 or 20 years ago and not without significant costs both financially and emotionally to parents.  Many people are ill-equipped to handle the stress and financial cost of parenting children with profound needs. We chose our children and yet people often remark, "I don't know how you do it?"  Parents who did not make that choice are just expected to deal with it.

                                                Shannon post back surgery in July 2010.

                                                Robby, our foster son, at his group home.

My concern is that there are many who seem comfortable with gutting a program that is in place to keep the most vulnerable citizens among us alive and well cared for.  If these are not "the least of these"  that Jesus told us to care for, I frankly don't know who is.  

Saturday, August 11, 2012

Black and Proud - Hopefully

Two of my children started school this week.  Sassafras and Little Man go to a charter school and Monday morning - off they went.

The school they attend is 80+% caucasian.  Sassafras' grade level is very diverse.  Nearly 25% AA and about 6 of the 44 sixth graders also happen to be adopted.  That is so great for her.  Unfortunately, Little Man is the one and only AA child in his grade level, and I'm not aware of any other adopted classmates.  For him, this is very difficult.

At dinner this week as we were discussing school he stated, "I don't like being black."  A simple statement, but a very disturbing and deeply sad statement for him to make and for us to hear.  He has struggled through so many deep feelings related to adoption, loss, being a part of a transracial family, knowing he's lagging behind classmates in his studies.  All these have been attacks on his self-esteem.

Whenever your child makes a statement that reflects possible self-hatred you can't help but cringe.  If you're experienced parents, as we are, your cringing is on the inside and your child has no idea how deeply sad the statement has made you.  We probed asking why he feels that way.  He repeated statements I've heard from him before, "Every time they talk about a black person in history everyone turns and looks at me - I don't like that."  He would love to blend and that, is impossible where he is.

My responsibility as a white mother raising black children is to raise a child who is proud of his heritage racially and culturally. We thought we were doing a relatively good job. We have many people in our life from a variety of racial backgrounds, but we may need to take another look at how we are addressing raising a black young man in a predominately white area.

We recently took a vacation to Idaho to visit family.  Our Idahoan family is a diverse family themselves, but Idaho in general is not.  While traveling through Idaho, Wyoming, Utah etc. there were several times I felt very uncomfortable as we were the only family with any black faces.  More than once I couldn't help but exclaim, "Where are all the black people?" One restaurant stop in particular I cut short because I just felt we weren't real welcome.

I was feeling a little bit superior as we rarely have had that feeling here at home - it has happened, but it is fairly rare.  Transracial adoptions are also relatively common in our area.  Yes, we often get stares, but there are more friendly curious ones rather than we don't want you here kind of stares.  I'm so use to it I forget that it probably bothers my children. We can't go anywhere in public without someone - a sales clerk, the sample hander outers, fellow shoppers, etc. implying that we don't belong together.

So, I'm reflecting on ways I can help him become a proud young black man.  He has come so far in so many ways and gaining confidence in himself is a process.  A process that needs fine tuning on occasion and this is one of those occasions.