The Paauwe Report

Our continued journey...

Well, here I am, finally getting this update down.  I can't make any great excuses.  I just have to pick and choose what I can accomplish each day.  Unfortunately, I have chosen to do some other things ahead of this blog.  They are worthy things, in my book at least, and you'll learn more about them later in this post.  So, that said, I'm sorry to have kept you waiting even longer than usual.

Avery is attending school 3 full days per week.  She is in a special ed preschool class at IPS School #15.  Everything has gone pretty well thus far and we are happy to report that she has a pretty great team of therapists and teachers working with her.  Her teacher is very clam and caring.  The children literally fight over who gets to sit next to Avery during circle time.  Another brain injured girl can't stand it when Avery is upset.  She comes to Avery's aid, bringing her toys and trying to make it better. She gets this concerned demeanor when the OT works on oral feeding and she has to be assured that Avery is OK.  Even the most rambunctious boy in the class is smitten with Avery.  Apparently he is so calm around her and wants to always sit by her.  Kara, their classroom teacher, has to make them take turns sitting by her :)  They all get excited when Avery giggles or makes vocalizations. Another little boy with CP and g-tube comes up to her and lays his head next to hers or touches her face.  It is absolutely sweet and so comforting that this is the environment she experiences at school.  The head sp ed teacher also adores her and threatens to take her home with her all the time.  She comes in each day Avery is there to get her "Avery" time.  How great is that?

Avery keeps a very busy schedule.  In addition to school, she receives outside therapies.  We go to Riley on Tuesday and Friday mornings for PT and OT sessions.  We also travel to the far north side of Indy on Tuesdays for hippo-therapy at Children's Theraplay.  Now we have to add 3 sessions/wk of speech therapy, as well as 2 additional OT sessions.  It is about to be really crazy!  We are also working with Avery's nutritionist from First Steps, Trina, as a private pay.  She is coming once per month to the house to help guide us through a change from medical formula to a homemade blended formula diet...which we hope will be better for her from both a GI and neuro standpoint.  Trina is making sure that we are getting the proper nutrients, vitamins, and calories in her diet and she is tracking Avery's growth through weight and length.  We are grateful to have her assistance!  We are also set to begin working with a feeding specialist, again as private pay, in home so that we can work towards successful and meaningful oral feeding.  Doing nutrition and feeding as private pay allows them to come to our home for the treatments/consultations and saves us from having to travel to even more appointments.  Even with the expense, it is such a benefit that we appreciate.

Avery  continues to have nursing care through Medicaid disability while I am working and she is at school.  She also has a nurse that spends a few hours with her Friday afternoon so that I can have "respite" time to run errands or work on other projects.  I can't thank these wonderful women enough for the work they do for us each week.  They take such great care of Avery and they adore her!  They are great to our whole family.  We realize how very blessed we are to have them and we are so grateful!

I wish I could report that Avery has made some huge developmental gains, but she hasn't.  This is not to say that she has made no gains...just not a big leap of any sort.  She is still working hard on head control and torso control.  Both continue to get better...but we aren't there yet.  We are hoping that PT, especially the hippo-therapy, will get us there sooner rather than later.  We will see.  She has made some significant improvement in the vomiting/GI world.  We recently added a medication to help speed up her gastric motility (one she had previously been on about a year ago) and it seems to be helping in a big way.  She recently gained more than a pound over the course of 5 weeks.  That has not happened in a LONG time.  She had fluctuated between 26 and 27.5 pounds for about a year.  Last week she weighed a little more than 29 pounds.  We celebrate that success!  It will also help with the oral feeding work we are about to begin. 

On a different note, we continue to see daily seizures and she has some rough days.  We have seen a recent increase in the worst of the seizures she was previously having off and on.  Some days she's had as many as 7-10 of this particular type.  It is hard to see and it is hard to not be a bit heartbroken by them...to feel a bit defeated.  She has gone through so much to still have this many seizures, particularly this type.  Making it worse, she seems to know they are coming and she screams and looks so scared while they are happening.  I grab her and just hold and rock her through them while telling her that it is OK and that "mommy's here, mommy's got you"...but, it is not OK...not really.  I hate them...I do!  I want them to disappear so badly.  Why can't they?  Needless to say, Jon and I are now looking at what is next.  How can we help her now?  This just can't be just the way things are going to be for her for the rest of her life!  I can't believe that...I can't give up hope.  We don't know what the next step is yet...but we will.  To aid us in making any decisions, she recently had a 24 hour video EEG and an MRI.  We will see what clues those give us about our next steps.

Caiden is doing so well in school.  His midterm report was 10 A's and 2 Bs!  Of course, we are very proud of him for working so hard.  To his delight, he is now getting the chance to do even more advanced math with a group of a few other 2nd graders.  He's been talking a lot about that.  He also says that he loves science!  Well, since Jon and I both have science degrees, we find that interesting.  Coincidence, nature or nurture?  He had a Thanksgiving meal in his class this week and I was able to attend the feast.  It was fun for all the kids to eat such a meal together and to talk about all the things they are thankful for.  It's just really great that they are getting these extra experiences.  He has a Winter performance coming up in early December and we are looking forward to seeing all the kids sing and play violin and otherwise perform. 

He recently lost his 3rd tooth...one of the front top teeth.  The other one is now really lose.  I suspect he will be a true "all I want for Christmas is my two front teeth" before much longer.  Right now it looks funny, with one missing tooth and the other shifted over and sticking out.   Jon keeps teasing him and calling him "Hillbilly Caiden"...not very PC or nice, but we all think it pretty funny!   Of course, he is all excited about Christmas...though, he is really starting to ask a lot about Santa...wondering if he is real.  We ask him, do you believe he is real.  Sometimes he says "yes" and sometimes "no".  We tell him that we believe in him, but that Santa only comes to those children that believe.  For now, that's the way we are handling it.  His wish list includes nearly all Pokemon items.  When he likes something, he is ALL about it.  Too bad he is fickle when it comes to these things.  Once it was Bionicles, then Harry Potter, then it was Star Wars, next was Indiana Jones...know Pokemon.  And when he is done with one, he is DONE.  Until then, he memorizes everything about it/them.  Know, if he could just remember what he did that day at school in addition to all of Pikachu's incarnations and powers (or whatever they are called!)!

Jon is still working at INDOT and doing well.  Not a whole lot to report on his end.  He works hard, helps at home and it a great Dad and husband.   We are trying to get the house in shape for Christmas and decorations.  We are looking forward to the opportunity to spend time with family we don't get to see often.  We will be in Tell City over the holidays and we will also be having company at out house over the new year.  We finally get to meet our nephew Jack!  And see Megan and Dave...who was haven't seen for 3 years...holy cow!

We have done a lot of things over the late summer and the early fall.  We took a trip to see Jon's brother and our SIL and nieces at their house on Lake Huron in Michigan.  We had a great time!  We also participated (CRAZY!) in our churches Home Tour for the Fall Bazaar.  Om my, was that a lot of work and craziness.  We we working like mad to get the house is some sort of order to show.  I don't know what we were thinking!  Though, it did make us get some much needed stuff done around the house.  The main bath is no longer navy blue!  A few less projects keeping us from selling the house now. 

I am doing well.  I am still enjoying my work for ASK (About Special Kids).  In October, the grant I work under had some budget cuts so I now work 15 hours per week instead of 20.  We as an organization were not happy about that, but out hands were tied.  I don't mind really, except that I can't get my work done well in that little of time...but, I couldn't do so before even at 20 hours because the need is so great!  Frustrating...but welcome to the world of charitable non-profit work!  It did allow me to move to a home office set-up though...so that helps with travel costs and actually "gives" me more time to do other things since I don't have to leave the house to work!  I do miss seeing all the office-based ladies though.  I've learned so much from them over the last 9 months and I couldn't be prouder to be a part of such an amazing group of women! 

As I mentioned in the beginning, I have been working on some other worthy projects.  First, I have been working on getting the Hemimegalencephaly Family Support Network I created to be fully functional.  I am getting closer and am excited to be preparing to relaunch the website in January.  It has been a lot of work and a lot of HME mom's have pitched in to help.  This project is as much theirs as it is mine and I can't wait to see where we go with it in the future.  I hope that is will be a HoME to all HME families.

The second project is something I have long wanted to see and am very proud and honored to be a part of.  It is an organization call The Hemispherectomy Foundation.  It was founded this summer by a family from Texas whose child had a hemispherectomy for Rasmussen's Encephalitis.  We met the Hall's in Baltimore during Avery's last surgery...they we there for Jessie's consult.  In the midst of all they were going through, they found the strength and the means to start this organization.  WOW!  AS it began to grow, they asked me if I would be interested in a Foundation position as the Specialty Director for Hemimeglencephaly and Cortical Dysplasia.  I was honored, and after some initial thought and reflection, I agreed to sign on.  This Foundation is just what families, with facing or having undergone hemispherectomy surgery, need.  I couldn't be prouder of what the Hall's and their founding team have created and how much the Foundation had grown just since July.  It's amazing really and I hope you will take a bit of time to explore the Foundation website.  If you find it in your heart to offer any financial support (no matter how small) for its missions, it would be a very appreciated gesture I assure you.  It could be as simple as buying our hemi kids-designed Christmas cards...you support a great cause and get some really special and cute cards in return :)

Lastly, I am working on moving this blog to another site...yes, again...I'm sorry.  It is a free site (this one is not), which is significant in our current economy.  I plan to use it to host all the info that is in Avery's website as well...and thus close the www.averypaauwe.com website (also a monthly fee).  Doing this will not only save us money, but create one spot for those following Avery to view updates and information about her.  It will also make it more streamlined for me to manage and update both the updates and the web info.  I hope you will find it to be a good change.  You can prepare for the move to the new site even now...as it is functioning.  Just be fore-warned that Avery's Pages are still a work in progress.  I was first concentrating on getting the current info from the website transferred over.  More updates and changes will be completed in the future.  You can check it all out at www.thepaauwereport.wordpress.com.  Let me know what you think about this move...good or bad.

OK, well I think that I've monopolized more than enough of your time with this post.  I hope you all had wonderful Thanksgiving celebrations and found that you had so many things to be thankful for.  We sure did!  I also hope that this transition to the Christmas celebration of Christ's birth is one of peace, joy and connection to the true meaning.  Thanks you, from the bottom of my heart, for continuing to follow Avery's journey, and the rest of us by proxy. 

Happy Holidays and may you receive many of God's Blessings this season!

With love,
Holly

Our Vote, Your Vote

Dear Family and Friends,

I've struggled for a while with whether or not to "voice" my opinions on this election here and with whether or not I should "ask" you to support the presidential candidate that disability advocates' research, as well as my own, leads Jon and I to support. With the election a mere day away, my decision to finally discuss our beliefs and how we came to our choice here may be mute action. Nonetheless, I feel compelled to do so for Avery and for all the other families caring for a child with special needs. My intent is not to offend anyone, and I hope you will remember that should you choose to read on. Merely, I am sharing another perspective…one that you may not have considered…or one that you may not be able to fully appreciate having not lived "our" life or having not worked with families like ours on a daily basis as I do. Because of the beliefs we carry, the research we have done, the information provided by the leading disability advocate groups, and with the knowledge of what raising a child with special needs is like for us and for other families, Jon and I will be supporting Barack Obama and Joe Biden on Election day. We hope that, if you are still standing in the middle, trying to decide which way to go, that you will consider families like ours when you cast your vote. Because it does matter…it matters greatly to many families like ours. To just pull the lever and think that it doesn't really matter in the end…well, it couldn't be more wrong to think that way. We don't expect you to do so blindly or just because we've asked you to. We hope that you will take a moment to look at the reasoning behind our decision to support Barack-Biden and then take a moment to do some of your own research if you haven't already.

 

First off, I want to address Sarah Palin because a lot has been said about her selection and the fact that she is raising a child with special needs. On the surface, to many without a child with special needs, it may seem a fore drawn conclusion that a family like ours would be drawn to supporting this candidate because of our "shared" experience with her. For Jon and I, and many other special needs families, this is simply is not the case. We have chosen not to support McCain and Palin for many reasons, and none of them have to do directly with our personal conflicts with how she has chosen to proceed at this time in her family life. While I do not agree with her choices as a mother, they do not mean that she shouldn't pursue her personal ambitions or that she would not be a qualified leader. The problem arises when she voices that families like ours will have a friend and advocate in the White House if we elect she and McCain to the highest offices in the land. On the surface, if I take her at her words, that is appealing…I admit…she had my attention at the Republican Convention. However, I question that sincerity and her draw on our "shared " experience for many reasons. She is only about 6 months into this journey, and no matter how well anyone thinks they've accepted things or know where things are going to go…they don't. She doesn't know what it is like to fight the battles that so many families like ours have, and likely never will because of "who" she is. It is so very easy to say the words that so many have been waiting to hear from a politician, especially one who appears to "share" the experience. Our problems with this pronouncement from Mrs. Palin goes even further though. Until recently, she and McCain never made any specific mention of how they would be an advocate to our families in the White House…no policy statements at rallies or in any of the debates. In fact, much of what was mentioned in the debates did more to undermine this statement. Saying something alone does not make it so. There must be plans and action moving forward. And a history of inaction can speak volumes. Recently, Mrs. Palin took to offering some guidance to our families as to how the McCain-Palin administration would advocate for our families. She stated that they would call on all the best disability awareness and advocacy organizations to help them make our nation "better" for families like ours. Again, sounds great on the surface…but, the truth is that these groups have been around for many, many years and available to politicians and administrations as a source of information and guidance on how to serve our families and meet our very real needs. Unfortunately, the Republican Party has not a history of consistently working on significant disability measures or reforms that really affect the everyday lives of families such as ours, and as such, many of these groups do not support this McCain-Palin ticket. In fact, they have supported many policies that make every day a little harder or a little more frightening. To be fair, both parties' candidates have policy sites where you can read about their policies on disability issues that affect our nation. Please read them here: Obama-Biden and McCain-Palin. For a comparison between the 2 tickets plans on disability-issues, please see this document: 2008 Presidential Candidate Positions on Disability-related Issues.

 

It would take me days to fully describe the struggles families like our, and families worse off than ours, go through daily and in the course of their child's lifetime. None of it is black and white…and there are no simple and easy explanations. Without living it, it is impossible to truly know and appreciate. And that it the honest truth. So, here I touch on just the biggest issues, though they all have so many branching issues and ramifications that I am afraid they are rather simplified in explanation.

Every day, families like ours struggle with:

1. Getting their child access to the education they need and in the format they need it as entitled to by law, also known as special education;
2. Getting not only access to heath care for their child with special needs, but appropriate health care that will provide rehabilitative services that aren't limited to peanuts and that doesn't force them to remain in poverty to cover just that child;
3. Having access to the supports and services they need to care for their loved at home long-term (at a significantly lesser expense, even with those supports and services) instead of the state caring for them in state-ran and financed institutions (wait list in Indiana are 10 years long, and in other states, even longer);
4. Having their child valued as a human being and for what they can do, instead of what they cannot do;
5. Having true accessibility throughout our society and meaningful inclusion in it for their children as well;
6. Staying financially afloat with all the additional strains that are placed on their income (which is often limited because they are caring for their child at home and in the community);
7. Maintaining a strong marriage with all the additional stress having a child with special needs brings to it (it should be no surprise that statistics show a higher divorce rate in families like ours);
8. Maintaining our personal health, as most of our energy and resources go towards helping our child reach their highest potential;
9. Staying connected to our "typical" children so that they don't feel cheated of their childhood and starved of our attention;
10. ….etc, the list could go on and on.

 

In Indiana, special education is governed by what is known as "Article 7" law. The Federal Gov't legislates what States must provide, at a minimum, to students qualifying for special education. This Federal law is known as IDEA (Individuals with Disabilities Education Act). States can adopt regulations which provide more…but they can't do less than the Fed has defined. Why is this important? Well, the Federal Government is defining for States what must be provided, as they should or there'd be a whole different set of problems, but not providing all the funding it promised. Now, States are expected to comply with the rules, but without the full monies set aside and promised for such purposes. This is not right. IDEA must be fully funded. Obama has supported this historically; McCain is only recently in support of this, but at a slower pace (5 years until full funding achieved under his plan). Voucher programs that support sending funds to private school placements actually put children in special education at greater risk, b/c they are left behind in the underfunded and understaffed public schools that were abandoned by general education students in favor of these private schools through vouchers. There is no incentive for these private schools to take our children in special education into their programs and provide them with an education appropriate to their needs (as required by law in public schools). Vouchers are nothing more than a band-aid and do nothing to fix the actual issues plaguing our nation's public schools. With adequate funding, our public school can provide the education that our children in special education need and as required by law. Hard decisions must be made and schools must be held accountable, but only after having been given the tools to actually have a chance at succeeding. Parent's must have access to health care for their child with special needs that does not force them to live in poverty to get the coverage their child needs. Parent's must have the support and services to care for their child at home when first needed, not 10 years later.

 

So many of you watched Jon and I struggle with the birth of our sweet, sweet Avery. So many of you dug deep into your hearts and your pockets to support us, both financially and emotionally. Because of that, we survived and even thrived to some degree. What Jon and I want you all to realize is that not all families are like that. Not all families are that supportive. Not all of them have the financial means to help in such meaningful ways. We were lucky to have you all…and blessed that you cared enough. But, every day, there are families like ours, that are not keeping their heads above water…that are having to make decisions that were even harder than ours to allow doctors to remove half of Avery's brain. Families choose to give up their children, not because they want to, but because they have no alternatives. I know that many of you felt that by helping Jon and I, you received a far greater gift in return. The same is true for helping others…even if you don't know them.

 

This presidency is not about race, it is not about gender, and it's not really about age or political party either. I want to point out that none of these candidates have meaningful executive level experience (Palin's current stint as Governor of Alaska could be arguable, but she governs a state whose total population is far less than any major metropolitan US city). It is not always about experience anyway when it comes to the Presidency. It is more often about character and judgment. It is about the ability to bring informed people together to make informed decisions and policies. It is being big enough to listen to a counter opinion and even changing your mind when new facts warrant it. It is about the ability to lead and to think bigger than one's self. It is not about pro-life or pro-choice, it is about preventing the need for such a decision. It is not about pro-guns or anti-guns, it is about protecting innocents from gun harm at the hands of felons or the mentally ill. It's not about marriage between a man and women vs. marriage between persons of the same sex, it is about the right to obtain benefits and visit your significant other in the hospital. It is not about same-sex marriage ruining the sanctity of marriage in our country…it's a divorce rate of 50%+ in heterosexual couples pushing that sanctity to it's limits. In the end, it is about tolerance, understanding and compassion…about doing what is right by each other. It is about taking care of each other, because we do not live in our own little microcosms. What we do or do not do DOES affect others. Our neighbor's child's quality of education does affect us. The financial state of our neighbors and communities do affect us. We are not isolated to only our deeds and our successes and failures. Each sends a ripple into our community and our greater collective whole. It is so easy for us as religious persons to stand up and profess our righteousness through our religious beliefs, without really evaluating if we are truly living the life God meant us to. Did Jesus leave those in most need behind? Did he look at color of skin or place in society as a means to value or devalue others? Did we all not come from the same maker…black, white, brown or red skinned as we may be?

 

Jon and I support Obama because he has a meaningful plan to improve the lives of individuals with disabilities and the families caring for them. Not only is his plan more detailed, but it is also more thught out and better aligned with what families like ours are REALLY needing. We support Obama because he professes and speaks of nothing but unity and of standing up for those who need it most. We support Obama because he has shown that he is a capable leader by answering questions time and again with real answers and with specifics and with an honest and knowledgeable zest. We believe that he is a man of his word and that we would truly have a President who is looking out for ALL of us, not a chosen few. His skin color makes us no difference. His gender makes us no difference. His political party makes us no difference in so far as the person he has shown to be. For Jon and I, the risks to our family and other families like ours is just too great to vote otherwise. In fact, in our opinion, the risks are too high for ALL families for us to vote differently. Taxes are an inevitable. There are some things we must pay for, as a collective good for all. Some things government can do better than we can alone…and some things they must. It is not about higher taxes and more spending. It is about fairness in taxes and about smart spending and smart budgeting. New spending can be offset by reductions in ineffective and wasteful spending, such that no new net spending results. To imply that new spending will increase the overall budget is nothing more than trickery. We believe that Barack Obama has the right plan for America and no matter how many distortions have been made about what he has said, he has continued to say the same things time and again and with the same clarity. If there is any confusion about what he has said or what his plans are, it is from those who seek to distort them for their own purposes.