Special Needs Mom
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it has been a while

it’s no secret that i have been m.i.a from my site for a while… i just couldn’t get my head wrapped around everything and what i wanted to share with the world, but i’ve given it a lot of thought and time and i’m happy to say “i have a plan.” And yes the plan does include a “redo” so i’ll be transitioning into writing about my life once again but with a lot of helpful design and organizational tips and entrepreneurial posts, and oh yes, my oldest is now engaged so lots of wedding posts. so i’m hoping you will stay tuned and watch me as i blossom once again!

photo via

A Special afternoon and Evening!

if a picture says a 1000 words… this is speechless!

I remember…

Have you ever felt that God has been watching you?

I know you all are thinking doesn’t God watch everyone? And I believe the answer to that is “yes.” However I truly feel like God has been watching me since I was a child…

I remember when I was in sixth grade it was the “big year” of middle school, lockers, gym uniforms (uh remember those?) and new friends…

I remember turning the hall for the first time and seeing “them”…

For the first time in my life, I saw an entire class of special needs children. A whole class! I was so intrigued by them. Who were they? Where did they come from? Where have they been for the last 6 years? How come I never saw them in my school before?

I pondered these questions each time I saw them…

Who are their families? How come I didn’t ever know them?

I remember seeing them walk in the halls together; eating lunch together and I just sat and wondered…

I remember seeing many of my peers ignore them…

Laugh at them…

Point at them…

Make fun of them….

And it just upset me….

And I used to wonder, why? Why did this bother me so much? They weren’t related to me… I wasn’t one of them…

But for years and years I wondered about them and their challenges… Why were they born like that? What is going to happen to them?

I wasn’t really a curious child about to much but for some reason this just seemed to strike a chord with me…

Back then we didn’t have programs where the disabled population was included with the regular children, and I remember wishing that there was… I wanted to know these children; I wanted to be their friend…

I was always nice and said “hello” as I passed them in the hall as my peers looked the other way pretending they were invisible.

It just bothered me…

After middle school I never saw “that class” again, that group of special needs children again and I wondered; where did they go? What were they doing?

And then “life” as it has its way of doing kept moving on and I stopped thinking about the special needs population and I graduated from high school and college…

Step in about 17 years…. November 1992….

Shelley, your daughter has Cerebral Palsy.”

I will never forget that day… I will never forget those words… And then I remembered all those children and how I wondered each day…

And then I knew why God was watching me… God choose me… to care for this beautiful little girl whose life would be much like those children I wondered about each day…

A colorful cake for a colorful young lady!

I have made some pretty amazing cakes over the last 20+ years for my daughters, if I say so myself. I made an incredible haunted mansion for Halloween one year, and a 3 layer “pound cake” which my grandmother dubbed 10 ton cake because it was so heavy. However, one of the liveliest cakes I made was for Hadley this year, and I made it with her help.

White on the outside….

6 layers high…

How about this folks?

all the colors 6 layer Rainbow cake

I got the recipe from Martha Stewart, and I can recommend this for a fun baking project with your little children.

colorful batterFirst we mixed up a few batches of cake batter and added a splash of color

Hadley my little baker Hadley had a blast mixing and tasting, Yum!

6 layers of the rainbowWe added the delicious filling between each layer as we pilled the cake so high

the birthday bakerYou can see the birthday baker is thrilled with her end product!

A family that walks the walk…

Our family firmly believes in giving back… I can get out my soap box and give you several reasons to support causes that come near and dear to your heart as I am sure there is “something” that has touched your life by now, or believe me there will be…

But I have always believed in helping others, as a small child I can remember wanting to host a Ronald McDonald Carnival in my backyard for McDonald’s Charities. This predates the Ronald McDonald House which ironically later became my daughter and my sororities’ philanthropy of which my daughter was Philanthropy Chairperson. Also in my younger years I thought about opening a camp for children with special needs only to become a mother of a child with cerebral palsy. As the course of life would have it I went on to found a nonprofit organization to create fully inclusive playgrounds.

I do believe that some of this crazy world is set out for us. There is too much that has happened in my life to believe otherwise…

So to help other families of children with seizure disorders our family thought it would be fun to walk together in the National Epilepsy Walk to honor Hadley and others like her.

hadley got her shirtHadley loving her shirt

hadley startingAt the starting point

group finishTeam Hadley, family and friends at the finish line 2 hours or so later

finish line with miss kimOur family and Hadley’s ever loving teacher at the finish line, Cheers!

It was a wonderful spring morning and great family way to honor her spirit!

For better or for worse…

happy anniversaryphoto courtesy of Pinterest

Those were the words that passed my husband and my lips almost 27 years ago. As a mere 20 something young women I really had no idea what I was saying other then repeating the words that I was asked to repeat as I am sure Kenny would tell you the same. As usual I think he was much more nervous about this  change and what it would entail in his life, me not so much, just loved the idea of being with him ever single second and loved planning our wedding.

However over the course of the last 27 years if I had known then what I know now about my life would I have repeated those words? Um…. Probably, but let’s just say it is much better that we didn’t know because I’m not so sure we could have handled it… it has been a LOT, actually a lot would be an understatement.

Let’s just say that over the last few years I have come to believe that there is a “greater plan” for each of us, even if we don’t understand the chaos in “the moment” of a life crisis. I do believe that the man upstairs has our “story” written before we are born and we are here to see his plan through. There have been so many things in my life that some might say were serendipitous to getting me through to the next chapter.

As many of you who follow me know this chapter has been one of uncertainty which has caused a lot of panic and anxiety. Many times in life we don’t know what is going to happen however we hope that things don’t go crazy or awry all at once.

And unfortunately that is where my husband and I are at this moment. But we are here together, making decisions that are life altering, career altering, financially huge issues but hopefully they will be good for us “together” in the long run honoring those words we took almost 27 years ago… for better or worse, for richer or poorer,  in sickness and in health..

MetroAccess can take Hadley anywhere!

Hadley intervewing for MetroaccessHadley recently got her second set of “wheels” so to speak…she got her “MetroAccess” Pass which has made our lives a little easier since I have been having a hard time getting her out and about due to my “driving anxiety.”

I am so thrilled that now we can take her out to the movies or to the mall if I “can’t” get her there myself, or if she and a companion want to go to somewhere without me… It is a little step of independence for her which is a little thrilling.

Through MetroAcess in the Washington DC area people with disabilities are able to use public transportation with a bit of ease.

Since Hadley’s mobility and degree of her disability is a major issue she was able to qualify for door to door service after submitting an application and interview.

All trips that we schedule to use MetroAcess must be made 24 hours in advance which sometimes is a little bothersome, no running out at the last minute trips. However, if one lives near a Metrobus you can always catch these at anytime the busses are running and just show a MetroAcess ID for admission.

For door to door trips there is a fee associated with the time of day and the mileage, and it can be a shared ride depending on who else in the area needs a pickup or drop off.

MetroAccess service in the DC area is for: Washington DC, Fairfax City, PG Montgomery, Alexandria, Arlington and Fairfax Counties.

I am told since Hadley is registered in the area she is eligible to use paratransit transportation in other areas throughout the US which will come in handy when we travel. However arrangements must be made prior to the day of travel as with MetroAccess.

You also might not know:

  • After 9:00pm, if one asks the driver, special stop requests on Metrobus or Ride On are possible along the regular bus routes, when the bus driver feels it is safe.
  • Your driver can call ahead for a taxicab to meet you when one is leaving the bus.
  • Personal Care Attendants drive for free with the disabled passenger.

For more info on Metro Access you can check out their website

Or you can reach them via phone 1-800-523-7009, 301-562-5360 TTY 301-588-7535.

Sage, from the garden to the bath

I love gardening…. It is a great time to clear my head and just get down and dirty… literally… there is nothing as satisfying as growing a plant from a tiny seedling and watching it bloom and being able to use it in so many ways.

This year I decided that I was going to create a “Sage Garden” for Hadley. Through Hadley’s Conductive Education we learned that sage is a wonderful muscle relaxant if used to soak in a tub. I have to say I was a big skeptic for years and years about “herbal therapy” and what “good” it can do but this to me was next to amazing!

hadley's sage garden

Hadley has cerebral palsy which causes her arms and legs to tighten up to the point where she balls her feet up and one of her hands. It amazes me that she can actually stand on her feet and bear weight and walk while doing this. Try it… Tighten your feet so tight you feel all the muscles cramp… it hurts huh? Uncomfortable… yes! And somehow due to the spasticity she can keep her feet like this for hours, me a few minutes and I’m going nuts… but how do you “undue” this?

A few years ago Dora who is Hadley’s current Conductor (therapist) asked if we could give Hadley a Sage bath, she explained that the Sage acts a muscle relaxant. So with my eyebrow raised I went and boiled a large pot of water and put a bunch of fresh Sage in it…. The smell was divine!! Almost tea like however, the bundle I used was large enough to send the fragrance through the whole first floor of our home. After boiling it for about 20 minutes, we let it cool a bit and then brought the pot into Hadley’s bath and added it to her bath water. We gently put Hadley in her bath chair and down she went into the warm, tea smelling water… and we soaked her and let her sit for 30 minutes. When the half hour was up, we got her out and dried off and it was amazing the difference in all of her muscles… Her legs and hand were actually “relaxed” and this then made her working with Dora much easier. I strongly recommend you giving it a try if you have painful leg muscles or if your child has cerebral palsy.

So this year we decided to create a large Sage garden so we never run out for the summer when Dora comes back! I can smell it now…

Miss Congeniality or as we call her Hadley!

hadley does broadway

Hadley “does” Broadway, seen here with casts from Sister Act, The Adams Family, and Godspell

Miss Congeniality is a title when heard most people think of Sandra Bullock from the movie, or I often think of my oldest daughter Sarah who has won that title a number of times, but today and most day’s I think I’d have to give the crown to my younger daughter Hadley.

I have never met ANYONE like Hadley! Once people get past her first name and the “unusualness” of it; well 20 years ago it as quite unusual, Hailey, Yes, lots of those but Hadley nope just one special little lady! As I was saying… once you get past her fist name upon her introduction “My name is Hadley!” One cannot fall in love with her contagious smile and zest for life! Hadley who is developmentally delayed which was caused by her cerebral palsy has a true love for ALL people, no matter what their status is on this earth, Hadley will love you and make you smile. A true joie de la vie!

I have seen her wave her invisible wand work and touch people who  have been forgotten about; like the homeless, smile… I have seen her touch the lives of children to celebrities and it never ceases to amaze me how her gift of “a smile” can make anyone’s day a little brighter. God bless our little vessel! Our ambassador of Good Will and Cheer!

Fine Motor Holiday gifts

gifts for children with special needs

As a mom of a special needs daughter I have been through many holiday and birthdays where friends and family ask, “What do we get Hadley?” It is a bit harder and takes some thought behind finding toys that are appropriate for special needs children since there is such a wide range of disabilities. However it is doable and I’ll be giving my recommendations as a mom of a child who has cerebral palsy with developmental disabilities.

For years Hadley has worked with Physical Therapists and Conductors on Gross Motor, Occupational Therapists on Fine Motor, Speech Therapists on speech and language, Special educators on cognitive growth and therapy. So I have seen a LOT of toys come in and out of our home as well as therapists offices. The one thing that I will tell you is don’t worry about what “age” the toy says it is appropriate for because all children develop at different rates. You should rather be wondering what play value will they be getting from the toy. We have toys in our home that Hadley loves that are for very young children but have such great music elements on them which she loves, we keep them!

1.    Vtech light up alphabet apple:

Learn everything from letters to telling time with the Alphabet Apple! This learning apple features a clock with movable arms to encourage basic time telling skills, fun, letter-specific animal graphics on each of the 26 letter buttons, and a Music Mode with 26 melodies to explore. The Alphabet Apple also includes an interactive learning board with easy carrying handle, as well as fun light-up buttons to provide helpful hints and unique reward sequences.

2.    Melissa & Doug Shape Sequence Board:

The shape sequence board will help your child recognize color, shape and size, and begin sorting objects into groups. These skills are the “building blocks” of beginning math skills. What better way to explore these important concepts than with boldly colored wooden blocks and frame!

3.    LeapPad Explorer:

With everyone around our home getting new iPhone Hadley has gotten numerous old phones which she loves to “play” with. I noticed that LeapFrog introduced its LeapPad Explorer, which is designed to look and work like an iPad or other tablet device and offers kids an age-appropriate and educational tablet experience.

The LeapPad Explorer features a built-in camera/video recorder, a built-in microphone, and a library of more than 100 learning game cartridges, books, apps, and videos. Just like our tablets, Hadley would be able to touch the LeapPad’s five-inch screen with her finger or tap it with the stylus.

I like this because games auto adjust so kids can learn at their pace. Each LeapPad book app is actually three books in one, offering each story at three different reading levels. LeapPad remembers a child’s progress from game to game and book to book to keep the content challenging and engaging. Content includes everything from phonics skills, mathematics, and spelling to geography, world languages, music, creativity, science, and life skills. Kids can also practice their writing skills with step-by-step guidance and a child-sized stylus.

With the reading apps, kids can touch the words to hear them sounded out and open a visual dictionary. With the microphone, kids can record their own narration. These apps feature animation and motion-based activities with popular characters, such as Lightning McQueen and Cinderella.

And to boot you can easily and instantly share your children’s masterpieces with family and friends via email or Facebook. I’m thinking how much Hadley would love this!

4.    Art-Time with Crayola:

Crayola has some great products that Hadley loves to create with! Crayola Twistables®  Crayons and Colored Pencils:

Twist-to-advance crayons and colored pencils are easy to grip and less likely to break, particularly if squeezed in immature, tight-fist grasps. No sharpening or label peeling is necessary. These unique crayons and pencils stay the same length as they are used, which gives physically challenged users more motor control and surface area to grasp. Vary the drawing pressure on a Twistables crayon or colored pencil by pressing firmly or lightly to create a deeper or lighter color. Or here is another idea, tape two or three Twistables crayons or colored pencils together to create a multiple-point drawing tool to make stripes, plaids, or multiple lines.

Another cool product to discover is Crayola’s Erasables. Now it’s easy to make changes and corrections when drawing and writing in color. Each Crayola crayon and colored pencil is tipped with its own eraser. With erasables, all ages of people with special needs can get the results they want and enjoy the control that erasing mistakes provides.

And last Hadley loves Anti-Roll® and triangular crayons. These products are designed to stay in place. Triangular crayons guide fingers toward a writing grip. Both types of crayons are perfect for assuring that drawing materials remain close at hand

5.    Play-doh:

Another fun craft idea that Hadley has spent many hours with is play-doh. We have made everything from balls to pies and I love that not only is it good for fine motor but also for the imagination.