I was checking in on some of my favorite blogs today in my spare time (yea right) and found this clever tip that I just had to share with all of you.
I thought this was a brilliant idea to give visual cues to our kids on changes in routine! Why didn’t I think of this!!?? Please take a moment to click here and read this short but clever idea!
I can’t believe that time has gone by this quickly. Today is the second day of summer vacation in Georgia. I remember the
good ole days when summer didn’t actually start until almost July…..of course then we didn’t start school until after Labor Day in September. But it’s just a different span until the kids go back to school. So for now I dream of August 4th and pray for the strength to make it thru the looooooong HOTlanta summer.
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 
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!
As parents of special needs kids, no matter the age, many of us do far more care tasks than we might otherwise with a child of the same age. Whether it’s because your child has physical limitations or intellectual limitations it’s really immaterial. The reality is that sometimes the toll of this care sneaks up on you and you don’t even realize it.
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.
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?
Yesterday was what my husband literally refers to as a “fake holiday”. By that he means one of those holidays he feels Hallmark and American Greetings conspired to get on the calendar to make us all run out and buy a dozen cards and create hurt feelings when expectations are inevitably not met and worse….but on with the point.
Quite honestly I don’t know how it even got to be Mother’s Day – the past week having been a blur for so many reasons. Honestly I had just had it and it was a day that I would have been happy just to sleep through with the covers securely over my head but that’s a pipe dream – the very fact that your a mother means that doesn’t happen. The fact that we had everyone converging on our house for Mother’s Day brunch that I was cooking made that an absolute.
Waffles, omelets, hash browns, sausage – oh yea, – mimosas !! (and yes, coffee) If I do say so myself it was a pretty good job on my part with the cooking (if you knew me you’d know that if *I* say it was good it was probably damned fantastic! LOL) Everyone seemed happy – except for me….and Katherine.
You can always tell….you can’t always put your finger on it but you can just tell something isn’t right and down she went – behaviors galore…..don’t even want to go into it but suffice it to say that I felt like the only mother in the world who had a child telling me I was the WORST MOTHER IN THE WORLD and so loved that she would HATE ME FOREVER. Ya, Happy Mother’s Day. Oh did I forget the STUPID IDIOT part? Yea, it was one heck of a great day.
That is why the email I got a few minutes ago made me feel so much better. For those of you not inclined towards religion you can skip part of this shortly and I’ll warn ya when.
In the past I’ve talked about Rising Above Ministries. Jeff Davidson has an email called Elevate that he sends out for free which I’ve really gotten to looking forward to receiving. Not overly religious but great messages for special needs parents – makes me feel less alone and gives me some good messages to have resonate in my heart on some days when I need it badly. Today was one of those days. Since his emails say very specifically that they can be shared without any permission, at will, I am taking Mr. Davidson at his word and sharing his latest email with you all here. If you had the less than Hallmark/American Greetings version of Mother’s Day that I had (dang fake holiday) maybe you can find some comfort here as well. (if you’re offended by anything even mildly religious this is probably where ya want to drop off)
The Day Will Come
Yesterday was`a memorable Mothers`Day in our house`but for all the wrong reasons.
Sundays are hard enough on Becky on a normal Sunday. Because of my ministry duties at our church I have to leave home at 7:00am and I don’t return home until 1:00 in the afternoon. That means Becky has to get Jon Alex up, dressed, fed, and to church all on her own. Even after she arrives, she is by herself because I have responsibilities before, during, and after both services.
We have been blessed to have an assistant that meets us at church and takes him to children’s worship and kid’s class so Becky at least gets to attend the service.
Being Mother’s Day Becky was so looking forward to this Sunday.
It started off bad and went downhill fast from there.
First, Jon Alex’s helper failed to show up so there was no one to help him. Becky took him to children’s worship but after a few minutes he walked to the door and then to the car, wanting to go home immediately. So much for church.
They had flowers for the moms but she had to leave before even getting one.
She put on a brave front at first assuring me it was OK and just part of it. It wasn’t until last night that she admitted she cried the whole drive home.
I thought I would treat her by bringing home takeout with me from one of her favorite restaurants. Those of you with special needs kids know its easier to get takeout than to try to sit down and eat in a restaurant.
When I arrived they had lost the order and had to start from scratch. I waited and waited. When I arrived home at almost two o’clock we discovered they had messed up her order.
That was probably the high point of the day thanks to me.
You see we have a group of a couple of dozen folks who come to our house on Sunday evenings for a meal and Bible study. Last night as they arrived I shifted into autopilot “ministry mode.” I was going around the room making sure I was speaking with everyone and that they were engaged. I would drift around the house making conversations, all the while in my head going over my thoughts and notes for the Bible study I was about to lead.
Meanwhile, I left Becky all alone to take care of Jon Alex, feed him his dinner, and tend to all his needs. I was so busy ministering to everyone but my own wife, that I left her to do it all. She didn’t even get to eat until everyone left after 8:00 last night.
On Mother’s Day.
God gave me a family before he gave me a ministry and they should come first. That was pretty pathetic on my part. And as usual, God dealt with me by making it another one of his “teaching moments.” So I’m apologizing to her right now as she reads this along with the rest of you in front of the whole internet world.
I want to acknowledge and recognize the thousands of you raising special needs kids who daily lay down your own lives for your kids. The way you have sacrificed your own dreams, plans, careers, and life’s aspirations to care for an individual with special needs– you are genuine heroes who don’t get the recognition you deserve. Every day, unlike most of us, you put the needs of your special needs child paramount in your life. You lay down your own life and sacrifice it for another.
The Bible says there is no greater love than to lay down your live for another person.
That’s what you do every day. You deserve more than just a special day.And to those of you who are single parents trying to raise a child on your own, and wondering if anyone in the world understands and gets what you go through every day, please hear me.
I do.
But more importantly, God does too.
When you cry he captures your tears in his bottle. He has written your name on his hand.
He will not forget your sacrifice…ever. He will wipe away all your tears. He will make everything new. There will be no more sorrow and no more painYour special day is coming. It’s his promise.
Maybe Becky can also know how special her Mother’s Day was because it’s impacted others and let them know they are not alone. That’s hopefully some comfort knowing that many more good things have come from the bad you went through. Thank you Becky for being a great mom to Jon Alex and Happy Mother’s Day!
This week rather than featuring articles from the news I thought I would single out some simply spectacular posts from Blogging About Disablism 2008. There were so many great posts that were submitted and I’m sure you all didn’t have time to read through all of them. I’ve singled out several in a variety of different categories….if you read one that I didn’t single out I’d love to have you point them out in the comments below. Please understand if you weren’t singled out it’s not a negative to your article but I try to only list between 5-7 articles a week so people have a chance to actually check them out
Wheelie Catholic – Treating Ablists under the Medical Model using an amazing sense of humor to cover a difficult topic
Parenting Special Needs Children – Inclusion and the Myth of the Magical Mainstream a MUST read for any parent struggling with mainstreaming a special needs child
SpedChange – May Day: Retard Theory the specifics of the example may be more extreme than you’d be willing to go but the provoking nature of this article WELL worth the read
Jenelle’s Journey – Coming to terms with Normal a beautiful and candid description of being the parent of a child other than “normal”
Kate….Uncensored – Blogging against disablism a great rant about prejudice against those with disabilities
Growing up with a disability – Mistaken Identity an amazing article by David who is often mistaken for others….find out why
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?
It happens to every parent at some point. Your child is ill, your in a hospital or doctors waiting room just waiting for someone to give you an answer. That’s where I am today only I have the mixed blessing of being at home waiting in front of my computer instead of an emergency room or hospital room (although I’ve done my share of time in both of those).
Katherine has had hypertension for about a year now. We had attempted to address it with diet and exercise alone and it became clear about 2 months ago that this was not working and the blood pressure continued to rise. We put her on medication but the cardiologist we’re working with wanted to rule out renal artery stenosis (narrowing of the renal artery) which can many times cause hypertension. They did an ultrasound and instead of what they were looking for found a mass on her kidney. Well this brought on our first association with a nephrologist.
The nephrologist wasn’t particularly comforting to be honest. The cardiologist seemed to think it was likely to be a cyst – the nephrologist seems to think that cysts are far more comforting in the 50+ set (which leaves Katherine out). So he thinks an MRI to truly understand what it is. Fine. So off we go and wait 4 hours to have the test done LAST Friday only to be told at the last minute that all the metal in her mouth (braces) has to be reviewed by the orthodontist because there’s stuff in there that could break their machine – ok and worse – break Katherine’s mouth. So how do you get mad at them for stopping us from doing that?
The man who runs MRI at the facility we were at gave me his personal business card and said as soon as we could get the parts of her braces which were conductors out of her mouth we could call him and he would not make us go through the wait process again. True to his word I called him and within 1 hour his assistant called us back and had us scheduled for the following day.
This time the test went off without a hitch. She was a real trouper while they gave her an IV for the sedation and contrast. They said after 55 minutes they had gotten what they needed. Fantastic – what did you see??!! Now you KNOW that the answer that followed was one that has frustrated parents from sea to shining sea – We have to wait for the radiologist to review it. Oh SHOOT ME!!
Me: Well now how long?
Them: Oh within a week.
Me: I don’t mean to be impatient but their is SOMETHING ON MY DAUGHTER’S KIDNEY. I’d like someone to just tell me what exactly it is and if it’s something we have to be worried about?
Them: Well you could call the doctor and see if he can get it sooner.
Me: So you mean we have to wait until one doctor actually connects with another doctor??? Does Armageddon happen before or after?
Them: tense laughter, polite smile
So now having called the doctor first thing this morning, first thing after lunch break and 10 minutes before 5 here I am waiting until Monday and praying that the God who saw fit to entrust me with this precious package will understand that I’m mortal and I can only take so much waiting….
Well tonight was the end of the road for Marlee but think about just how far she made it and you can’t help but be proud – and hopefully she is as proud of herself as we are of her.
Who knows whether she’ll ever see this but if you do Ms. Matlin – you have done us all proud and we are forever grateful for your example. I continue to try to utilize it in my day to day life. My daughter will be quite sad to see you go. You see, she thinks your super cool like Aunt Mary (my stepsister) who is also profoundly deaf and is an amazing mom, wife and teacher. Maybe not quite as good a dancer as you but not many of us are
thanks to lifeprint.com for the graphical depiction of PROUD above
Governor Palin,
Congratulations to you and your husband and happy birth day to Trig Paxon Van Palin! With that, we take this opportunity to also welcome you to the amazing country of Holland. You’re very familiar with the Italy tour (having four older children) and I want to assure you that your time in our little part of the world will be very different than your tour of Italy but as your statement already seems to recognize it will be no less thrilling albeit with different challenges, milestones and achievements.
God has indeed entrusted you with this beautiful soul. It speaks volumes because it takes a truly special person to be a special parent. That’s not to say we’re a bunch of saints by any stretch. We all have our share of foiables. Just by way of example, as a rule special parents suffer from depression at a higher rate than parents as a general category. We won’t all have the same foiables but we all share one thing in common – a fierce love of our child and a determination to maximize their potential for success and independence in the future.
You’ll find that it’s not always so easy to achieve that. There is the medical labyrinth, the educational labyrinth and the governmental labyrinth. Oh and the stigma labyrinth, the hyperactive worry and oh never mind. In the end game it all pales in comparison to what joy you are having right now holding that precious bundle you gave birth to.
My mother often said to me – much is expected of those to whom great things are given. I certainly hope you’ll abide by that. Being the Governor of Alaska gives you an incredible opportunity to advocate for your son and the greater disability community. To often those in government really don’t understand why changes are required. You will be in that unique position to not only understand the needs of the disability community better than most but more importantly, you actually have a position that gives you the ability to affect change with your access so many of us could only hope for.
Of course it’s only conjecture at this point that Trig has down syndrome but your statement makes it clear he has some special needs.
Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed.
We certainly wish you all the best and hope you’ll lean on those of us who have already started on our journey in Holland for the love and support we will gladly give. Trig, you are already blessed, little angel, to have parents who recognize what a privilege they have in being your parents. I’m pretty sure your parents are right that you have great potential to make the world a better place. For now, just rest easy knowing you will be loved by not only your family but the greater family you’ve just become a part of and don’t even know it yet.
Much love to you and your family.
picture courtesy of KTUU TV Alaska
Thanks to Michelle to pointing out this beauty’s birth!