Valentines for Special Needs Parents

Happy Valentine's Day

Now this is what Valentine's Day is really all about!

Be sure to check out the slideshow link on the right side of the page.

Happy Thanksgiving!

I have so many things to be thankful for today and everyday - including this cute little turkey!



Happy Thanksgiving everyone!

Happy Fourth!

I hope you all have a safe and happy Fourth of July!

Merry Christmas Eve!

Remember earlier this month I posted a picture of our Christmas card preparation? Ronnie was chosen as this year's victim poster kid. So here is the finished product that adorned our Christmas cards! Absolutely one of the best "presents" I have ever received!



Hope everyone has a wonderful holiday full of joy, smiles, warmth, and hope for the future.

Happy holidays, my friends!

An Always Holiday Spirit

A lot of people seem nicer during the Christmas season. Not everyone, of course. There are still those folks who are impatient standing in long lines or angry because you took the parking space they believed was reserved for them. But I have noticed more smiles, more "Have a great holiday!", and more considerate comments to the salespeople and service workers.

I'm glad to see it during Christmas, but I really wish I saw it more all year long.

I know that we all get impatient, get angry, and just have bad days. But it's more of the blah days I wish we could overcome. I know it's early for New Year's resolutions, but I want to thank more people in the future. I want to smile at strangers more often. I want to slow down and enjoy the life that surrounds me not just the life I have programmed for myself and my family.

I want more people to say, "What a nice person" instead of "What a b*tch." I want my children to learn to be more thankful and less expecting. I want my whole family to notice sunsets more often and comment on lovely flowers more often. I want my children to rush to help someone, not rush to criticize or complain.

I just want to bottle this Christmas spirit and let it out in dribs and drabs all year long. And if someone runs out of the Christmas spirit, say around March or April, I want them to be able to go to the Christmas Spirit store and get some more - free of charge, of course!

Tonight, this Friday of no particular importance, I will pray for more peace, more respect and consideration, more happiness, and more joy. Will you join me?

Avoiding The Holiday Meltdowns

Routine driven – obsessive compulsive – anal retentive…

Because my life and my family’s life is so dependent on routines, those adjectives are always applied to me. I don’t really mind because I have found over the last 15 or so years that predictable routines do help my children with special needs cope.

We get up at the same time each day. Breakfast, though not the same thing each day, does follow a predictable rotation. We follow a strict dinner, bath time and bed time schedule. We even run weekend errands at the same time each Saturday.

It works because it’s predictable – because there aren’t too many surprises for my children.

It works – except when it doesn’t. And the holidays are one of those times when it doesn’t. It’s very difficult to adhere to our routines when there are Christmas parties to attend, shopping to complete, and visits from relatives and friends. So, what do I do to make sure that the meltdowns are kept to a minimum when the unexpected becomes commonplace?

I try to insert some of the unexpected during other times of the year. I try to explain and give warnings about holiday events and how our routines may change. I try to find some extra downtime when events consume a large part of our days.

And so far, I have been pretty successful.

Ashley, the child most affected by a change in the predictable, has learned to find a quiet place and spend some time alone if her environment is getting too crazy. And with her, I try very hard to make sure she stays healthy during the holiday. Nothing makes an unpredictable routine even more difficult than being sick at the same time.

I feel like I need more tools in my toolbox though. What do you do with your children during the holidays to keep their stress levels manageable? Please share!

Blessings Galore

I am thankful for so many things this year that it is impossible to list them all. But, I'm going to give it a try. If I leave anything or anybody out, it's only because I'm also old and tired and my brain is slow :)

First and foremost, I am thankful for my family. It is a family that has grown in unconventional ways over many years, a family that seems to fit together perfectly.

I am thankful for all the people that have helped architect my family - the birth mothers, the extended family members, the social workers, and the friends and family that have supported me through the years.

I am thankful for the people who stand by me - the people who haven't laughed at me or shaken their heads in disbelief at the decisions I have made for my family.

I am thankful for the shoulders that are always there for a good cry, and the hands that reach out to lift me up when staying down seems to be the answer.

I am thankful for the people and organizations that fight along with me for my children's rights and needs.

I am thankful for my job and the means it provides to meet my financial obligations. We have a comfortable, warm house when others struggle to survive in the cold. We have food when others are hungry. We have clean clothes and books to read. We have things to occupy our leisure and vacations every so often. We all know we are loved, and we know that our family is our refuge in the storm. We have what so many people long to have, and most importantly, all my children understand how blessed we are and are always willing to share those blessings.

I am thankful for all of you in this blogosphere. You read what I write - good or bad. You reach out to me when I need support, and you graciously share your stories with me. Friendships are defined very differently these days then they were 50 years ago, and I am thankful for that. Because of our friendships - near, far, friends who have grown up together, or friends we have not yet met - we find the strength to fight for our children, and to make their lives the best they can be.

I hope that each one of you knows how very important you are to me, and how blessed I am that our paths have crossed.

Happy Thanksgiving!

Brotherly Love

Sunday was pumpkin day for my punkins! It was also a day of brotherly love - big brothers helping a younger brother and sister!

Starting Early

The kids and I decided to visit the Williamsburg outlet stores this weekend and do some Christmas shopping. With the economy, more specifically my economy, being in the shape that it is, Christmas purchases must be spread out over several months. Of course, the primary reason Ashley wanted to go was to visit the Converse Shoe Outlet!



Chip had decided that he would get Ashley a new pair of Converse sneakers (pair number 14!) for Christmas, and he wanted her to pick out the color she wanted.



Of course, she wanted them all!!



But she finally settled on orange, and they are now safely tucked away in the Christmas present hiding place!

If only everyone was so easily pleased...

Celebrating the Red, Pink and Blue

Due to a little laundry snafu, our tie-dye red, white and blue shirts turned red, pink and blue! But we didn't let that put a damper on our celebrating!



The weather was sweltering and I had to get creative to keep the kids standing still for pictures. A flower from my garden did the trick....at least until Ashley ate it!







In the picture below you can see Ashley's little hand reaching to snag the flower from Chip!



Then the flower became a snack....



Our celebrations continued with a fabulous dinner on the grill (cooked by Chip), a selection of summer fruits and vegetables, a patriotic dessert of frosted Rice Krispie treats (again cooked by Chip), and finally, fireworks on TV!

A very good day! Happy Birthday, America!

Memorial Day - 2010

Voice of The Fallen
by Alex Kaye

far away a voice is calling
someone long ago, who’s fallen
I listen hard and hear it say
hear me on memorial day

under the colors, of a flag true
I fought a war and died for you
oh listen to me when I say
hear me on memorial day

you knew not me, I knew not you
the war I fought was just, and true
I knew just what I had to do
the duty of a chosen few

oh listen mother, hear me dad
don’t be angry. don’t be sad
war is dark, notorious
but the goal was glorious

listen to me, hear me say
I died for freedom on that day
I did not die in vanity
I died for all humanity

and as I lay here, dying, dying
I think I hear some voices crying
I think I hear my mom and dad
but no, these voices are not sad

I thought, I’s sure my fate was sealed
I thought I felt the killing steel
I watch the battle from the ground
I only see, I hear no sound

how things are clear. a perfect sense
the struggle of the innocence
oh if I’d known before the war
it is the same side we fight for

I was only just a knave
but my heart was strong, and brave
the duty of a chosen few
I did just what I had to do

sometimes I’m your brother older
sometimes I’m the unknown soldier
if I could only make you see
we all are one, humanity

through the silence hear me say
remember on memorial day
remember what this day is for
remember me, and stop all war

Plugged Back In

We survived! Our ‘unplugged’ week at a cabin in the woods was wonderful. I just can’t remember the last time I felt so relaxed. I definitely recommend this type of vacation to everyone. Here is my list of the best and worst of an ‘unplugged’ vacation:

The Best:

• Four inches of snow on the ground made it really feel like Christmas. Having a park ranger come by each morning to sprinkle ice melt on the wheelchair ramp made it even more special.


• Going to bed whenever we wanted – getting up whenever we wanted – napping whenever we wanted – the perfect antidote to stress!


• Hot cocoa and peach pancakes tasted even better without the blare of television or the radio.


• The ranger recommended we keep the thermostat set on 70 degrees. That’s about eight degrees higher than my thermostat at home. It was so toasty and I didn’t have to worry about the heating bill.


• Because the cabin was relatively small – three bedrooms and a large kitchen/great room – everyone stayed in the same room during the day. At home, the kids are spread all over the house and it feels like we just pass in the hallways some days. It was nice to just be together as a family for much of the day.


• With the hectic lives we all live, often we forget to sit and just talk – at least that is true for my family. But for our week away, we talked, really talked.


• Chip kept a roaring fire going in the stone fireplace each day. There's nothing better than being snuggled on the couch watching the fire.


• There were no laundry facilities. That meant I didn’t have to do my usual two loads each day. That in itself was a wonderful vacation.


• We went exploring the country-side one day. It was fun to visit areas of the state we have never seen.


• The wildlife was abundant, especially the wild turkeys. I guess since they made it alive through Christmas, they were feeling a bit cocky!


• The handicapped bathroom was incredible. There was a roll-in shower with a little seat. Ashley took extra long showers each night, just sitting under the water and playing with the sprayer.

The Worst:

• Well…ummm…well…I absolutely can’t think of anything. Except maybe that there was no dishwasher. I had to wash dishes by hand, for God’s sake

Merry Christmas To All

Today starts our 'unplugged' holiday, but before leaving for a week, I wanted to wish everyone a very Merry Christmas. I hope your holidays are full of joy and love. My year has been enriched greatly by each and every one of you!

Sharing Our Dreams

This past weekend was the third annual Dreamcatcher’s Holiday Party. Dreamcatchers is a statewide support group, established many years ago in Virginia and made up of families whose lives have been touched by deafblindness. Those of us who have been with the group for many years have watched our children grow and flourish, and we are now watching a whole new group of young children and their families as they travel the path of deafblindness.

We are a non-profit organization, but one which does not generate many funds. In fact, if it were not for the generosity of our state’s Board for the Blind and Vision Impaired, we would have no funds. But even without money, I believe we would still come together periodically because the coming together is so very important to us all.

We have been there for each other during the grief that often accompanies the diagnosis of deafblindness. We have felt the strength of the parents that have come before us, and we all continue to grow into the parents that our children need us to be.

We laugh together – we plan the educational strategies for our children together – we celebrate the successes and learn from the failures – we provide emotional support in difficult times – and we are even there sharing the heart wrenching tragedy of losing one of our children.

We continue to exist on a wing and a prayer but because we have all seen the power of that prayer, I strongly believe our organization will always go forward.

Thank you to all the parents who joined us this past Saturday. Thank you for braving the cold weather – for setting aside your busy schedules for a day – for traveling many miles for some food and some camaraderie – and for sharing your beautiful children. And a special thank you to the lovely ladies of the Virginia Deafblind Project for joining us!

I hope you all have a wonderful holiday season!

Today I am thankful for the warm feeling of connectedness that comes with sharing our dreams for the future.

Merry Christmas To All

A Christmas Prayer
by Robert Louis Stevenson

Loving Father,
Help us remember the birth of Jesus,
that we may share in the song of the angels,
the gladness of the shepherds,
and worship of the wise men.

Close the door of hate
and open the door of love all over the world.
Let kindness come with every gift
and good desires with every greeting.
Deliver us from evil by the blessing
which Christ brings,
and teach us to be merry with clear hearts.

May the Christmas morning
make us happy to be thy children,
and Christmas evening bring us to our beds
with grateful thoughts,
forgiving and forgiven,
for Jesus' sake.

Amen.

Christmas With The Sesame Street Gang

One of Ashley's Christmas presents this year was going to the Sesame Street Live show at our Coliseum. She went two years ago and really, really enjoyed it, so today's trip was much anticipated by Ashley and I and Amy, Ashley's aide. But, our excitement was slightly dampened when we arrived at the Coliseum.

Although there was plenty of handicapped parking in the parking deck across the street from the Coliseum, there was no ramp or safe access from the parking deck to the facility. Amy and I had to push Ashley in her wheelchair up the entrance ramp to the deck. And then we had to travel a bit in the street just to reach the curb cut.

When we entered the Coliseum, a helpful worker directed us to the elevator which would take us to the floor level seats. I wanted Ashley to be as close to the stage as possible given her significant vision impairment, but when I ordered the tickets through TicketMaster, there was no way for me to request accessibility. I just hoped for the best.

Unfortunately, when we arrived on the floor level, the barrier around the seats had several openings to walk through, but a wheelchair couldn't be pushed through because there was a curb height barrier. The Coliseum workers tried to be helpful and said they would lift Ashley's chair over the barrier. But, as I mentioned before, Ashley doesn't like strangers touching her chair. So, Amy and I got Ashley to stand and step over the barrier, and then we lifted her chair over. Needless to say, I wasn't real pleased about this.

Then we found our seats. There were several rows back from the stage, and in the middle of the long row. I mentioned to another worker that we would need one of the chairs moved so Ashley could sit in her wheelchair. The worker said she couldn't do that. At that point, I was getting real annoyed, and Amy was even more annoyed. But, to the credit of the worker and the facility, they moved quickly to make things right.

After some back and forth conversations on walkie talkies, three manager-types showed up, told us they had another set of three seats for us, and that Ashley's chair would fit nicely on the end of the row. The seats were actually better than our original ones. The manager-types also told the worker to let them know when the show was almost over and they would set up a ramp to get Ashley's wheelchair over the barrier at the entrance. And finally, the worker stopped back by and said, "I think the characters will be stopping by to see Ashley!"

So, Ashley thoroughly enjoyed her Christmas gift as evidenced by the photos below!

Holiday Month - Christmas Day (An Update)

I wrote a post last year titled "Holiday Month - Christmas Day" in which I talked about shifting the way we celebrate Christmas. Being very tired of all the commercialism associated with Christmas, and even more so this year when times are difficult for almost everyone, I wanted to shift my family’s focus to the spiritual celebrations. In last year's post, I wrote about how I was going to accomplish that.

So this year, we are now half way through Holiday Month, and we are all looking forward to Christmas Day. The house was decorated right after Thanksgiving. Several gifts have already been exchanged. We've made cookies. We are hosting a party tomorrow. Soon we will travel the city to look at all the lights. Family members will be joining us on Christmas Eve and Christmas Day. And we will reserve Christmas Day for its true purpose.

While the new approach I suggested last year would be harder to implement for families of young children, for my teenager-full family, it's working and working well.

I hope your holidays are going well - happy and as stress-free as possible. If not, bake a batch of chocolate chip cookies and eat them all!

Retail Therapy

Black Friday - the quintessential day of olympic shopping. I haven't ventured out on this day of bargains and germy crowds since my now 18 year old son was just a toddler. I hired a sitter and hit the stores to find great deals on toys and other gifts, but I haven't tried it again since adopting Ashley almost 12 years ago.



Black Friday shopping is not for the faint of heart. I was worried that with Ashley's deafblindness, she would be easily over stimulated by the crowds. And with her tentative health, I worried that exposing her to such a large germ pool would be disastrous. But I changed my mind this year.

The lure of shopping is just as great for Ashley as it is for any other teenaged girl. So, we left home early, jockeyed for parking spaces, and joined the masses of people searching for bargains.

First, we went to Circuit City. This store was to be my litmus test since it is usually one of the most crowded on Black Friday. If Ashley could handle shopping there, she would probably be ok at the mall or other large stores. She did great! She never once got over stimulated, or if she did, she managed it very well. Buoyed by her smiles, we went on to World Market, Best Buy, Target, Petco and 5 and Below. We rounded out our day with dinner at Cracker Barrel, and still Ashley was happy and smiling. In fact, my son, Chip, said she was happier than he had seen her in a long time. It's amazing what a little retail therapy can do for a person, eh?

While I was very pleased with how Ashley handled her day, I was much less pleased with the accessibility with some of the stores we visited. I'll tell you more about that tomorrow...

Happy Thanksgiving

This is a tough year to be thankful. I’ve even stopped watching the nightly news because the continued talks about the failing economy, home foreclosures, layoffs and such depress me greatly. Yes, I am probably just sticking my head in the sand, but now, especially during the holidays, I don’t need to be depressed.

I don’t believe there is any person among us who has not been touched in some way by the grim economic situation this country is facing. But, I have to keep telling myself, and my sons because they worry also, that this is part of a cycle. Perhaps it is time for the greedy world of wants and not needs to get a wake up call. It’s hard though, especially for a child, when they haven’t experienced the full cycle before.

I do believe that as parents we need to make sure our children do not get too preoccupied and concerned with the gloom and doom. We can create lessons to be learned, but we, or at least I, don’t want to create anxiety.

So for today, let’s all find something for which we can be thankful. Be it small things or big things, I believe we can all find something. Share those things with your children, and ask them to share with you their list of thanks.

Our world, though troubled, is still a beautiful, special place to live and grow.

Happy Thanksgiving!