I guess overall I’m certain we are doing the right thing. It is just that some people I trust spoke out against it and I guess it shook my confidence.  I guess that it is to be expected. Not everyone is going to be on board with an invasive procedure – no matter what it is. I think that most parents have that problem to some degree. You want to be so certain you are doing the right thing you rehash the whole thing in your mind over and over until you eat your gut in the process. Sometimes it’s particularly hard because you are weighing (like I am) the variety of issues that your child has going on and how this one issue (in my case, Katherine losing so much weight) is impacting all these various issues.

Where I have come down is that no matter how much I value and trust the voices of dissent on this, the people who I trust most – me, her GI and cardiologist and my family -  Joan, dad, his wife Mary and my husband have all supported me in this decision. I have a further network of friends and family who have also encouraged me to just think it out logically – actually making a list of reasons why I think I should do this and why not – and it’s really helped. Sounds like something I might have done to make a decision about who to go to prom with in High School (although that wasn’t ever an issue! LOL)

Hopefully this is as temporary as we plan it to be and that it gives Katherine an additional tool to gain weight, to increase her appetite and allow her to gain her strength back and then maintain it on her own so that this will be a brief blip in Katherine’s history.

Do any of you second guess yourself on all the decisions that have to be made for your kids? How do you go about making these decisions? Do any of you have kids with a G-Tube? Any advice you’d give me on care, feeding, anything I should know? Please feel free to share!

It was the second time I’ve really had to deal with hospitalization for Katherine since Donovan was born. It hasn’t gotten easier. As awful as it was I know full well I’m really lucky. I have both sets of grandparents who live within 10 or so miles of us and are

1. retired (or mostly so)
2. available (with rare exception)
3. very involved with their grandchildren

My father and stepmother were with me as we took Katherine to the Emergency Room. Philip’s parents took over picking Donovan up from school. Of course that was only the first obstacle – we had a full week of obstacles while we juggled getting my husband to work, Donovan to and from school all while trying to maintain some sense of normalcy for him and someone to come up and relieve me once a day for an hour or so in an effort to make sure I wasn’t headed for a rubber room by the time this whole week was over. All things considered the week went pretty smoothly but it could have easily been disastrous!

At age 16 my parents left me at night when I was in the hospital. My mom was there all day with me but leaving me at 8pm and returning at 9am or so the following morning really wasn’t a problem. This is not even a consideration with Katherine. Katherine got freaked out every time I walked across the hall to the family kitchen to grab a cup of coffee let alone what would have happened if I had left her overnight and yet without my family I’m not sure what the heck would I have done!

We were in the best possible place, not only for Katherine’s medical care (a top rated children’s hospital in smack-dab in the middle of Emory University) but a children’s hospital is only dealing with children and is set up to give a lot of support to parents and the small patients alike. That being said I’m certain (because I read the handbook) that Donovan would not have been welcome to spend the night although he was welcome to visit during visiting hours. Realistically with all that was going on with Katherine physically however (and trust me when I tell you I’m doing you a favor by sparing you the gory details) having a toddler (who is making up for lost time with regards to the terrible twos) in the middle of all that was going on there was not going to be in any way desirable. I consider myself pretty good at handling both kids at the same time but even I didn’t want any part of that action!

About 2 days in as I was figuring out how Donovan was going to be picked up by one set of grandparents and transferred to the other because of various scheduling issues it suddenly occurred to me that there had been a time in my life where this whole thing would have been impossible. How do parents who have no family support or are single parents do it all under these circumstances? It suddenly dawned on me that eventually I wasn’t going to be so lucky. My parents as well as Philip’s are getting older and at some point I could very well be on my own in having to handle a situation just like we had this past week. Of course I hope it’s not going to be for a very long time, but I can’t really count on that. Because of this I need to figure out some basic kind of plan to have in place just in case. Realistically it’s probably not quite as important as all the legal plans, financial plans and the life plan or letter of intent….but it could go a long way to increasing my peace of mind to have something written out – Just In Case.

I went to therapy several years ago – things had just gotten catastrophic in my mind – work, home, everything. I couldn’t function except in the most basic of ways. My therapist – who I wish I could clone for the world he’s just that good – said ok so what’s the absolutely worst case scenario? I described it in vivid detail. He said ok. So now we’re going to write down what you’re going to do in that worst case scenario. He and I came up with the plan and it brought me some real comfort. I carried that plan around with me for quite some time. I was certain I would need to call on it at any moment. While I haven’t carried it around for the past year, it still sits in my jewelry box – Just In Case

Let’s just hope the Just In Case never is. Meanwhile I’ll continue to get my plan in place

For a number of years Katherine was in what is typically referred to as Extended School Year (ESY). Basically its summer school. Not the kind of summer school you are thinking of where you’re being punished for failing a class (or more) during the regular school year. Really this extended school year is for special kids who would otherwise lose significant ground academically, socially, emotionally by being out of school for too long a period. While it is almost more loosely run than the typical school year so that students are having more of a summer camp experience than just sitting in a classroom. It can be a really great experience for the kids as well as serving an incredibly important purpose – keeping our kids in the groove schedule wise (incredibly important for so many special kids who need structure to maintain) as well as giving our children the continual reinforcement of academic goals and objectives. Usually these are the same ones that are included in the IEP during the regular school year or several that are picked for focus during the shorter summer program.

For years this has been something we felt was critical in maintaining Katherine – to a great degree I still believe it’s important. However this year her dad, stepdad, therapist and I all decided to opt for keeping Katherine at home during the summer. We have put a great deal of effort into preparing her for the transition to high school. There were a number of things about how summer school was going to be run this year that made us feel it might be working against all we had started up with the high school planning. I did alot of thinking about well if not in ESY what would we do?? Sitting at home watching TV just was NOT what I had in mind for summer vacation. With my current condition, going to the pool every day isn’t an option either. So what could I do to allow for some fun while doing our own “ESY” program at home.

We started to think about the life skills that we’ve been working on during the school year and the skills she most definitely needs remedial work on as well as what things I could reasonably accomplish at home without driving us both to drink (keeping in mind that in some ways she is still a typical teen and I am “just” a mom). So it occurred to me that some of you with teens who are going to need to work on independent living skills might want to think about doing some of these things as well. Maybe you’re lucky enough your kid knows these things already and if so could you send them to my house

• laundry – separating clothing into color groups (white, light, dark) detergent, fabric softener, bleach, reading care labels on clothing and using the washer and dryer. Folding clothing and hanging up items is something she already does
• meal planning – if Katherine had her way breakfast lunch and dinner would consist of pasta, pasta and pasta. Oh and drinks – LOTS of drinks. So we are going to work at planning every meal for the family for a week and what we have in the house to achieve those meals as well as putting together a grocery list for what will be needed to make those meals. We’ll incorporate looking at the weekly grocery store sales and what can we have for a meal that might be on sale.
• Grocery shopping – yes she’s been with me a thousand times and even helps me find things. But now we’re going to work on shopping for ONLY what is on the list (not the thousands of items put at every corner to tempt you to purchase something you don’t have the money for) and learning about things like expiration dates, how to read pricing on items, determining how much of an item is in a package. Of course this is years of teaching but we’ll start out with a few items and go slowly.
• Job applications – they have started working at school on filling out forms but honestly they are pretty simple. I’ve started to gather a few different forms that local companies that Katherine could reasonably approach about employment would have so if it’s not information she already knows (name, address, phone number, etc.) it’s something we can start working on now.
• Money, Money, Money – it’s one of her biggest downfalls – what things cost and the fact that just because we want it doesn’t mean she can afford it (and I know that’s 3/4 of the American population but I’m not taking on credit card debt theory this year) Also in this realm will be knowing if you got the correct change when you paid for something because unfortunately you can’t count on the person at the register to get it right, or worse yet be honest. We’ll also go into the bank to make deposits rather than my usual run through the ATM machine so she is being met and meeting people who she needs to interact with in the community.
• Personal grooming – for better or worse I do not have the typical female teen. She is less than careful about her appearance. Whether we like it or not, people judge you by your appearance in some way, shape or form. So this summer is about hair care (brushing, washing), face care (washing and those Brooke Shields eyebrows) and dressing appropriately which includes not only matching the clothing up in outfits that are coordinated but that once we have them on are we looking at if the shirt is pulled down, pants pulled up and how the whole head to toe look has come together.

While these are things we are working on I don’t have any belief we’ll hit perfection we have to start somewhere. These are all skills that she will need for the rest of her life and they will be working on many of them in school next year so no time like the present to get a head start. What kind of things are you working on with your kids that maybe others could be thinking about. I’m certain my list is far from inclusive on all the various skills our children need to work on. Share!

This past couple of weeks has been something like that. I think that it really hit home for me when I got a fundraiser mailing from the Alzheimer’s Association. On the back of one of their pamphlets was something well worth reprinting – it’s the 10 Symptoms of Caregiver Stress. Of course this for them is based on caring for an elderly loved one but it seemed so relevant to me I thought I’d just modify it some to show you how applicable it is to us.

1. Denial – about the disability and its effects on the person.
2. Anger – at the person with the disability or others about any number of things – the injustice of it all, the level of available treatments, the prognosis, the long term ramifications, the drain on your family’s resources, financially and emotionally and about a million other things - and that people don’t understand what’s going on.
3. Social Withdrawal – from friends and activities that once brought pleasure
4. Anxiety – about facing another day and what the future holds
5. Depression – begins to affect the ability to cope
6. Exhaustion – makes it nearly impossible to complete necessary daily tasks
7. Sleeplessness - caused by a never-ending list of concerns
8. Irritability – leads to moodiness and triggers negative responses
9. Lack of Concentration – makes it difficult to perform familiar tasks.
10. Health Problems – begin to take their toll, both mentally and physically. Usually it’s not an overwhelming illness – just the feeling you just haven’t felt “right” in some time.

On this last day of the work week I’d remind you that an intregal part of caring for your child is caring for yourself. It’s always hard to “find” time to do this…so many demands on our time are always pulling at us looking for attention. Make it a priority to take some ‘me’ time this weekend, quiet your mind and relax. I’m not even talking a half hour – 5 minutes is a great start.

One of the ways I am working at taking time in my own life to try and change the stress is meditation. I know you all have this vision of me legs crossed, palms facing upward chanting UHM but it’s not that it at all. As it was originally explained to me by a great physical therapist is that it’s concentrated relaxation. One of the sites I have found most useful (and Forbes actually named one of the best of the web) is Learning Meditation.

Within the Meditation Room there are numerous available meditations for adults and children alike. Some are only 2-3 minutes long – some are as long at 10 minutes and there’s a wide variety in between. What I like is they are attainable even with only a short amount of time. The benefit to me has been noticeable and I hope it will be for you as well. It requires Real Player to listen to the audios or it has a printed version of the words that you can use while listening to your own relaxing music (think Enya, NOT Mettalica)

Mostly where I think it’s helped me is with my irritability (although my husband may argue this point ) but I think it is starting to move over into the sleeplessness part of life as well. I seem to be having a slightly easier time of falling asleep. Who knows where it might benefit you? I know that no one should refuse themselves 5 minutes a day (at a minimum) to regroup and refresh. What have you got to lose?

Well ain’t that the truth! We’re in the clear on the kidney. Apparently what was seen on the ultrasound was some kind of shadow or something and her kidneys are FINE. The past week has been pretty amazing. The thought that there could be something really wrong rocked me to my core.

It made me think about what I would do if it were really bad, what if it were finally something we couldn’t defeat and put in it’s place. There are some special parents who have to face that reality. I think they are probably the most amazing of special parents. The strength it would take to get through something like that…..I don’t think I’d have that in me.

It made me think of an article my husband had pointed out on MSNBC a couple of months ago that kind of ties today with yesterday in terms of posts. It’s a tearjerker so if you’re at all inclined to tears I recommend a box of tissues before you set out to read it (I needed a few). It tells the story of Robbie and his strong parents Jeanne and Steve. Jeanne and Steve found out during the pregnancy that baby Robbie had Trisomy 18 and would not likely live much past birth. While I loved the story of Jeanne and Steve, I believe that what they experienced is not different than what most people will experience during their pregnancy when the medical establishment discover disability in a fetus. I won’t belabor the point but it’s critical that there be a change in attitude and more than one group is trying to do just that for these special parents who are parents for far too short a time.

PerinatalHospice.com is a good example of the movement to support parents in what must be the most heartwrenching of decisions ever needing to be made. What I like about this is it gives parents a choice. It’s all well and good to say there is a choice, but to say there is a choice which is to terminate or continue the pregnancy with little or no support. No one should have to go through that alone.

There is also an author, Amy Kuebelbeck, who has a book out called Waiting for Gabriel which discusses cherishing whatever life your child has. And isn’t that really the point? Isn’t that what each of us try to do whether our child has 1 minute, 2 hours or 75 years? We want our special kids to make the most of their time here on this earth and with us. These parents don’t have any choice but to make the most of every minute, every second they have with their small, precious bundles.

Thinking there could be something ticking like a time bomb, growing on Katherine’s kidney made me think about things like that – had I made the most of the time we had together? Had I made the most of her life and maximized what she could have done, experienced, loved? I like to think I’ve done a fairly good job….I also think like just about everyone else I could do better. I’ve been given a real gift, one that so many others would kill to have. I want to make sure I don’t waste it. I just hope I remember that feeling. I hope that it doesn’t take something like a potential tumor to make me remember that and be faithful to that.

My hope for those reading this is that they can take this experience and live life as it should be lived – as every moment is precious and should be given it’s all because none of us know when it could all be gone. Today I was blessed. Today I got another moment. I hope you all get many more moments.

I swear to God (and I apologize to God for swearing) but for crying out loud! As the years past it becomes apparent to me that sometimes you just have to do it yourself.

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: Yes, my name is Kyron and my daughter is Katherine and we spoke several times yesterday and you said you would have the results of my daughter’s abdominal MRI from April 24. As of today I still haven’t received those results.

Doctor’s Office: We still don’t have those results in.

Me: Well you told me yesterday you would.

Doctor’s Office: I plan on calling them again today.

Me: Well, you told me that yesterday. What happened?

Doctor’s Office: I called and they still haven’t faxed the results.

Me: Well you should call them again and tell them you have an incredibly irate parent awaiting these results and beg them to fax them immediately so that you can get her off your back.

Doctor’s Office: I’ll do that right now.

Me: {note terse voice} Thank you.

Off the phone we go and then I call my contact at the facility. I get a name and number of a supervisor. I get assurances it’s been faxed already but they will be happy to fax it again if the doctor’s office will just call and request it. No problem I assure them. I take a name and direct number (I’ve been transferred at this point a couple of times) and thank them for their assistance.

My belief is that it has been faxed and the doctor’s office is pretty much incompetent since this person at the facility pulled everything up in a couple of seconds flat. Of course they couldn’t give me information over the phone because they have rules about that. So here we go again…

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: This is Kyron, Katherine’s mother AGAIN. I just got off the phone with the MRI facility and you should call Christine at 404-555-1212 right now. She is expecting your phone RIGHT NOW. She has the information already pulled up – all you have to do is call and give her the fax number. {Inference is that she should be appalled that I am doing her job but it’s fairly obvious that she’s non-plussed}

Doctor’s Office: Oh, ok, I’ll call right now.

Me: Thank you, I’ll call you back in one hour.

Doctor’s Office: Oh, ok.

Would you believe as of 5pm tonight I am STILL chasing this freaking report. My only comfort is that if it was catastrophic I’m hoping that the radiologist would have expedited it.

How come that is such little comfort?

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

Sounds like a cute rhyme that preschoolers say to learn their numbers but for me it was a little ditty about buying shoes for Katherine yesterday.

Katherine has never been a shoe horse – when you wear an orthotic, fashion via shoes is never something you really consider. As a youngster it wasn’t so bad, sneakers are sneakers are sneakers – as long as Katherine could get the favorite color of the month it was fine. Then you become a teenager. And every girl has some sweet pair of wedges, espadrilles, pumps, flip-flops or some OTHER fashion must have that would have Katherine falling on her face, breaking an ankle along the way.

Just about a year ago now, Katherine went through a heel cord lengthening. It was a difficult decision but for us – but for Katherine it has been one of the best decisions we’ve made on her behalf. Her gait is greatly improved, her mobility far better than it has been in years. It is because of this that shoes have even become a part of the discussion again. At her checkup this past week she mentioned to the doctor that she wanted “party shoes” and after some discussions about type and length of wear party shoes it was!

So off we went. We needed summer shoes for her anyway. The boots she wears during the winter would soon become oppressive in the Atlanta heat. Katherine can burn through the sole in most sneakers in 2-3 months max. The doctor sent us to a shoe store called McMahan’s in Decatur, GA (which if you need shoes that fit well and are well fit for adults – sorry I don’t think they have children’s sizes, look no further). They were meticulous in their pursuit of the perfect solution for Katherine.

Let me mention at this point that we have known for some time now that Katherine’s feet are not the same size. They have not been for years. The foot that has been affected by her stroke has atrophied and has not grown at the same rate as her other one for many, many years. We have compensated for that by using inserts in her shoe to fill up the space.

This has worked pretty darned well – up until yesterday when the nice (and did I mention patient) man working with us was quick to comfort me in the knowledge that Katherine has stopped growing. (how comforting that is is up to interpretation but that’s a post for another day) He also explained to me that her feet have grown since she was measured in November and her feet are now officially 3 sizes and one width different from each other. We now have a size 6 medium foot and a size 9 wide foot.

If you are doing the math the little ditty I started this post out with is starting to become clear. I would for the record at this time to say what incredible respect I have for parents with 4 children who all need shoes at the same time. I thought I too would have a stroke. I thought when my husband saw the charge hit the card he’d give me whatever stroke I didn’t give myself. . .

Then I looked at Katherine walk in these properly fitted shoes. I literally cried. Not big heaving sobs but little silent tears that just roll down your cheek without notice when the love in your heart just starts to pump the water in your tear ducts. It was the single largest improvement I have seen in her since we made the decision to do the heel cord lengthening.

Last night my beautiful 16 year old baby young lady went to a school dance in her properly fitted party shoes that had been given a little extra help and a little extra stability by a talented man who lives in the basement at McMahan’s Shoes. My heart was pushing the water out of the tear ducts for a second time that day as I got yet another shot of how very quickly they grow up and relished the feelings I’m sure every “normal” parent feels when their kid goes off to a school dance for the first time.

While she dance the night away I just held on to the pair of shoes that would never know the joy of dancing with my daughter but were worth every dime we spent on them.

Wow! Thank you so much for this honest accounting of what’s truly a very real part of being a parent to our special kids! The reality is we all want to minimize the stigma any of our kids get subjected to whatever their disability. Not wanting your son to use a cane is just a tangible symbol to what we all are worried about – our kids being treated the way everyone else is.

I’ve added you to my blog because I think parents will do well to read another parents’ very honest perspective on parenting a child with special needs. Thanks for being so willing to share with such candor and honesty what so many of us go through but might otherwise be afraid to say.

Please do us all a favor and go visit Nancy’s website and this particularly great post by clicking here.

As those of you who follow this blog know, Katherine has incredible difficulty with transition. So why I thought transitioning to a new school and teacher would be any different? Beats me but I guess I didn’t give it enough thought last time. Needless to say the psychotic break it caused has left me with an indelible reminder of what happens when I don’t remember and don’t plan for her needs in a transition scenario. It’s also why we kept Katherine for one extra year in the middle school although some have been all too willing to tell me what a mistake that was. So it was with no small amount of trepidation that I started looking at choices for Katherine’s new class next year in High School.

Together with her therapist and psychiatrist we came up with a concept to put together a transition that would allow her to spend some time – at first 1 day a week in the High School while remaining a student in middle school. This way she’s getting an opportunity to adjust to the new setting with the safety net of middle school safely underneath her.

The first choice was to move her into a similarly classified classroom. While on the face of things it would sound pretty ideal, the reality was so very different than anything I had in my head. I was very thankful that I could see the setting in advance. Had we just transitioned Katherine into that setting I can guarantee we’d be back in that roller coaster ride of hospitalizations again. Teachers seem good, children in the class were impressive. However Katherine would flounder in that setting. It was a total mismatch, a disaster waiting to happen.

The second choice was to take her into a class of children who were not as high functioning and not expected to function at the same level of independence as the first one. The teacher seemed great – very kind and nurturing and loving. The children were sweet, very obviously connected as a class – they rooted each other on in their various classes… impossible not to smile and root for them as well. Too bad that the teacher is leaving that classroom, the parapro is retiring and the classroom may move it’s physical location. So I saw yet another classroom in a different school praying it would be what we needed.

I entered the classroom to see probably 10 children sitting appropriately at their desks working on some worksheets. The teacher came over and introduced herself and for the next half hour while we watched the children working on their independent work with a parapro and several students from mainstream classes who were doing a workstudy in the classroom assisting. The teacher told me of her philosophy, things I could expect if Katherine were a part of the classroom, her qualifications as a teacher and allowed me to ask numerous questions. I also carefully observed her interactions with the students.

Ok, this mom is willing to admit that at first I was a bit overwhelmed by this teacher. I know I have been accused on more than one occasion of being a pretty assertive personality. This teacher made me look meek and mild and yet she was strangely compelling. Whatever it was I was picking up on was obviously working for these kids though. Regardless of the in your face nature of this teacher it was abundantly clear to me that she loved these children and that the feeling was mutual!

The teacher willingly admits she employs a “toughlove” approach with these children. She’s tough on them and unapologetic about it. Not unreasonably so, not the kind of tough that expects they are going onto college and careers as doctors, lawyers and teacher but tough that recognizes that each one of them has strengths that they should be encouraged to achieve the maximum their potential provides for. I felt like she was telling me this for two reasons. One because she feels that this approach maximizes each of her students potential for independence by the time they graduate. Second because I think she realizes her approach isn’t for everyone and wants to make good and sure you know it before you have your kid in there and you’re freaking out on how she’s treating your baby.

Without question, the two classrooms whose only real difference should have been the fact that they are in different high schools within the county system but the truth is completely different. What a difference a teacher makes in the classroom. Same basic curriculum. Similar variations in children’s personalities and abilities. Night and day the feel you leave when walking out of the classroom. It left me with an interesting decision to make.

I know when relating this to some of my friends yesterday everyone assumed that I would be choosing the class with the warm fuzzy teacher even though there would be no guarantee that the teacher who came in next year would be warm and fuzzy let alone with any talent or interest in teaching special kids. However that wasn’t what decided it for me.

Believe it or not Ms. Toughlove’s approach is the one I truly believe will work better for Katherine. Sometimes she really needs a kick in the pants. Without question she needs you to stand firm in the face of her behaviors. It is something I’m not always perfect about but I’ve come a heck of a long way. Sharon (Katherine’s personal support aide) is far better at it than I am and honestly – its just one part of what makes Sharon’s role in Katherine’s life so important.

Let’s face it. It’s just not always easy to be tough on your kid – especially when (s)he has had a rough day, week, etc. So often you just want to bring them close and kiss it all away. Being a teen is rough. For Katherine I feel like it’s even harder than it was when I was a teen. Sometimes it leaves me wanting to be warm and fuzzy but as I’ve learned in the past several years it really doesn’t help Katherine and the result is that it won’t benefit any of us in the long run.

So I went to the meeting at school where I said I want Katherine to have a dose of Ms. Toughlove please – in my warmest, fuzziest, most assertive manner possible