Special People Parenting Special Kids

Green the Vaccine March

Jun 6, 2008 Author: Kyron | Filed under: Advocacy, Autism

Well I missed the interview in the summer chaos that is our home but found a write up on it on the Good Morning America/ABC News website. Jenny McCarthy and Jim Carrey were interviewed on Wednejenny jim kids Green the Vaccine Marchsday’s show before they took to the streets of Washington DC to March on Washington with several thousand supporters to ask for support in both “greening” vaccines as well as reviewing the current vaccine schedule for children.

Let me make it very clear from the outset, popular or not, I am vehemently opposed to those who feel that the potential for autism is justification for withholding any and all vaccines from their children. I feel it is irresponsible parenting and irresponsible citizenship. I’d rather have my child here and autistic than dead from pertussis or measles or mumps or any of the other things vaccines protect our children and the population as a whole from. I am sure at this point some of you are saying but you just don’t understand what having an autistic child is like!!! You’d be right. I don’t know the full weight of it. I do know the behavioral aspect of it pretty sufficiently even if Katherine isn’t autistic. I wouldn’t wish autism or it’s devastating effects on any child or their family. I do not believe however that the scientific evidence currently shows conclusively that vaccines are the cause of autism. I do however believe that there are certain correlations that need far more investigation than they have gotten. I also believe that you can’t have the group that says to you “vaccines are good, and important” (CDC) being the ones responsible for investigating if maybe they were wrong….maybe something was missed….obviously the problem is not global but SOME kids may very well be having reactions to the vaccines. What makes those kids different from the ones that do? It’s sure as heck worth investigating further.

The argument that I felt particularly compelling from this march was the schedule of vaccinations. The basics of the proposal seem to be that rather than skipping immunizations that in addition to removing the remaining thimerosal from the vaccines and extending the vaccination schedule so children and their small bodies are given additional time in between vaccinations to recover and regain strength so that their immune system is ready to fight with the next vaccination. Maybe it won’t do any good – and I am not a doctor – but the benefits of investigating this as a possible method to understanding if the vaccination schedule has some relationship to the increase in autism certainly seems reasonable and responsible.

My son is 2 3/4 years old. Our family is blessed. My son is in the 149 out of 150 who has not developed autism. I know that when he was an infant though I prayed after every vaccination. I know that Katherine had seizures a couple of times when the vaccination spiked a fever. I can’t imagine what it would be to give a vaccine and to “lose” the child you had once known to something like autism. I couldn’t imagine that any more than someone could imagine what it is like to have someone tell you that your child has had a massive stroke and may never walk or talk. You just can’t know unless you’ve experienced it first hand. He had the same vaccines. What is the difference between him and my friend’s son who was diagnosed with Aspergers? Who knows?? Certainly not the medical profession.

I can’t help but feel that for a condition which everyone seems to agree affects approximately 1 in 150 children that more people in the medical community aren’t alarmed and aggressively pursuing answers, treatments and better yet, cures? It certainly seems that none of the suggestions I’ve heard or read about from this Green the Vaccine March would be irresponsible.

I am surprised at how little coverage this March seems to have gotten. There has been speculation that there has been pressure brought to bear on the networks and other news outlets to overlook covering this event because of some fear that it would lead to widespread vaccination moratoriums by panic stricken parents. I hope to heavens sake that I am just naive in thinking that we still enjoy freedom of the press. It seems to me that anyone who actually thinks that withholding information in that manner or being unwilling to engage in debate and discussion would think that a parent wouldn’t view that with the very real suspicion it deserves. I never met a topic that couldn’t benefit from healthy, respectful debate. Respectful of course being the operative word. You don’t have to like a persons position to be respectful that there is someone who has an opinion other than your own icon smile Green the Vaccine March

The reality is we have far too many children suffering and there must be a reason. It’s imperative that the debate keeps autism in front of people so that we can continue to push for research and answers. Unfortunately, children are not voters. We need to remind those in power that for every child with autism there is a mother, a father, a grandmother, a grandfather, an aunt, an uncle, a cousin and on and on who will vote on their behalf. We are our children’s best advocates. Whether you subscribe to one side of the debate or the other everyone can agree that answers need to be found and found now.

Thanks to TACA (Talk About Curing Autism), The Huffington Post, and Barbara Fischkin at the Huffington Post

Summertime….it’s Summertime

Jun 3, 2008 Author: Kyron | Filed under: Education, General, Strategies

I can’t believe that time has gone by this quickly. Today is the second day of summer vacation in Georgia. I remember thesnoopy dance Summertime....its Summertime 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 icon wink Summertime....its Summertime

  • 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 icon smile Summertime....its Summertime
  • 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!

Caregiver Stress and 5 minutes

May 16, 2008 Author: Kyron | Filed under: General, Medical, Mental Health, Strategies

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.

  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 icon wink Caregiver Stress and 5 minutes ) 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?

Mother’s Day? – The Day Will Come

May 12, 2008 Author: Kyron | Filed under: General

formom Mothers Day?   The Day Will Come

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 pain

Your 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 icon smile The Sunday Paper for May 4, 2008

Wheelie CatholicTreating Ablists under the Medical Model using an amazing sense of humor to cover a difficult topic

Parenting Special Needs ChildrenInclusion and the Myth of the Magical Mainstream a MUST read for any parent struggling with mainstreaming a special needs child

SpedChangeMay 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 JourneyComing to terms with Normal a beautiful and candid description of being the parent of a child other than “normal”

Kate….UncensoredBlogging against disablism a great rant about prejudice against those with disabilities

Growing up with a disabilityMistaken 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 thekidney Good things come to those who wait.... 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.

Blogging About Disablism 2008

May 1, 2008 Author: Kyron | Filed under: Articles

Today is Blogging about Disablism day 2008! I would just like to take this opportunity to suggest you all click here and visit Diary of a Goldfish which is the host to this event this year. There are a number of excellent posts on a variety of different topics related to disability. Not only will you get some good reading but I believe you’ll have the opportunity to be exposed to a bunch of new blogs!

Enjoy!!

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