thespecialparent.comSpecial People Parenting Special Kids

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 ) 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 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

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.

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!!

I posted about Trig Paxon Van Palin the other day. He is the beautiful son of the Governor of Alaska and her husband. In their press statement on the birth of this their 5th child, the stated that:

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.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would I have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.