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Tips for Feeding Kids with Special Needs

May 24, 2012 in Featured, Insider Insight by Admin Dawn

By The Real Food Moms, Jeannette Bessinger, CHHC and Tracee Yablon-Brenner, RD, CHHC, www.realfoodmoms.com

For your child’s body and brain to function at their best, it is important to provide a diet high in amino acids, the building blocks of protein. But since the body is unable to store excess amino acids it’s smart to split up your child’s protein supply—ideally among the three main meals and two snacks. By feeding meals high in protein throughout the day, you help the neurotransmitters in the brain function better, and stabilize blood glucose levels—preventing hyperglycemia and reactive hypoglycemia—blood sugar “ups” and “downs” that can affect some children’s ability to focus and/or settle down.

One cardinal nutrition rule is to stay away from simple carbohydrates, which break down into glucose and release too quickly into the blood stream. Sugar and high fructose corn syrup are a few examples of simple carbohydrates to avoid. Children are affected differently by sugar, however many studies suggest that sugar negatively affects behavior, impacting aggression, attention, hyperactivity, mood and proper mental function. It is best to replace sugary drinks and snacks with healthy high protein snacks like veggies with hummus or nut or sunflower butter; smoothies with whey or rice protein or nut butter; nuts, seeds, sliced hard boiled eggs, fresh fruit with nut or sunflower butter, yogurt with granola or with nuts and seeds and a dash of honey. When serving foods with added sugar, it’s best to keep it below 15 grams per 100 grams. Cereals should have 3-5 grams of sugar per serving, max, and it’s best to include protein with breakfast, e.g., hardboiled eggs or yogurt with nuts and seeds and a dash of honey. Incidentally, organic honey has many beneficial nutrients—in addition to being a taste treat!

Another essential is to remove synthetic food additives from your child’s diet. For a food additive to be allowed in the diet, it must be certified as “generally recognized as safe” (GRAS), which means it will not have a significant negative effect on health. Unfortunately we don’t know the long-term effects of ingesting chemicals on our nervous, immune, respiratory and endocrine systems. There are 24 synthetic food additives, and we are going to address the four major categories: artificial colors, artificial flavors, artificial preservatives, and artificial sweeteners.

Artificial colors have been embroiled in controversy for some time. A November 2007 study published in The Lancet stated that artificial colors in children’s diets contributed to hyperactive behavior. The UK’s Food Safety Agency released this statement on July 20, 2010: “An EU-wide health warning must now be put on any food or drink that still contains the colours that are thought to cause hyperactivity in some children. This is following the Southampton Study, commissioned by the Agency, which suggested a possible link between consumption of six food colours and hyperactivity in children. The colours are Tartrazine (E102), Quinoline Yellow (E104), Sunset Yellow (E110), Carmoisine (E122), Ponceau 4R (E124) and Allura Red (E129).” There had been a voluntary ban on food coloring in foods in the UK. In the United States, Blue No.1, Blue No. 2, Green No.3, Red No. 40, Red No. 3, Yellow No. 5 and Yellow No. 6 are still permitted in our foods and medicines. Some of these chemicals trigger histamine release and create allergic reactions like hives (uticaria). In the September 2010 issue of the American Journal of Psychiatry, Stevenson, et al., found strong evidence that histamine release affects hyperactivity levels in animal models and also influences frontal cortex dopamine release. In this study, there was improved behavior when artificial color was removed from the diet. The research underscores the importance of avoiding food and medicine with artificial colors. Moreover, most artificial colors are made of a mixture of coal tar. The International Agency for Research on Cancer says that products with 5% crude coal tar are considered a Group 1 carcinogen. How’s that for a reason to remove artificial color from your child’s diet?

Artificial flavors are also a concern, especially (MSG) monosodium glutamate, an amino acid from glutamic acid. MSG is used in commercial cooking to enhance the flavors of many common processed foods including canned soups, frozen dinners, seasoning mixtures, and fast foods. Many fermented products have naturally occurring glutamate, like Worcestershire sauce, soy sauce and steak sauces. Glutamate is also in many other additives like soy extracts, protein isolate, hydrolyzed vegetable protein, hydrolyzed soy protein, hydrolyzed yeast, and autolyzed yeast. MSG is not always easy to identify on a label. Be on the lookout for words like “spices” and “natural flavorings” on a food label, which means it might contain MSG. Two food additives, “disodium guanylate” and “disodium inosinate” are only used with MSG, so if they’re on the label, there’s a high likelihood that MSG is in that product.

Glutamic acid, which MSG is made from, is classified as an excitotoxin. However, it is considered to be GRAS by the FDA. Many people are affected by MSG, and children who have special needs are especially vulnerable since they might not be able to communicate their discomfort, which may manifest as a headache or nausea. Removing artificial flavors from your child’s diet is the safe way to go, and could help to reduce behavioral problems.

Artificial preservatives, such as butylated hydroxytoluene (BHT) and butylated hydroxyanisole (BHA) are being investigated for provoking chemical sensitivities. These preservatives have been associated with causing broncho spasm, rhinitis and more particularly in triggering hives (uticaria). Many studies on mice have shown that these preservatives cause learning deficits, difficult sleeping, developmental delays, aggression, decreased orientation reflex. Key reasons in removing artificial preservatives from the diet because that could also relieve behavioral symptoms such as aggression, hyperactivity, developmental delays.

Artificial sweeteners are much sweeter than table sugar, “sucrose,” and can interrupt neurotransmitter balance, which could make behavioral symptoms worse.

The following sweeteners have been tested for their safety through the Center for Science in the public interest. Aspartame which goes by Nutra-sweet, Natra-taste and Equal, is one that people who have Phenylketonuria (PKU) have to avoid because they can’t break down phenylalanine which can accumulate to toxic levels. Sorbitol, xylitol, mannitol, maltitol, lactitol, isomalt, erythritol, and hydrogenated starch hydrolysates are sugar alcohols that can cause stomach discomfort and diarrhea. Acessulfame known as Sunnet, Sweet One, and acessulfame potassium, should have more testing and should be avoided because rat studies found that it caused tumors, mostly benign but some malignant. Saccharin, which is Sweet n Low, may cause cancer. Stevia can’t be metabolized in our bodies which is why it has zero calories. More testing should be done on its safety. Sucralose, which is Splenda, is actually sugar chemically combined with chlorine…Buyer beware! Tagatose, a very new type of sugar made from milk sugar lactose, can cause digestive issues such as gas, bloating and nausea because it’s not well absorbed. It can be found in Diet Pepsi, Slurpees from 7-11, etc.

These are a few examples of why package label reading is essential in today’s world. Many of the sugar substitutes mentioned are found in gum, yogurts, baked goods, and drinks, including iced tea, soda and juices. It is safest to use natural forms of sweeteners. Some of the best include organic honey and turbinado sugar, which is raw sugar crystals formed by spinning the sugar in a centrifuge. The juice released is crystallized to keep the rich molasses color and flavor, and it’s less processed than conventional table sugar. Sucanat is the trademark name for the turbinado process.

Trans-fat is the end result of hydrogenation, the process in which hydrogen is added to liquid vegetable oil. Partially hydrogenated fats contain Trans-fat, and are less expensive and have a longer shelf life than standard fats. Trans-fats interfere with an enzyme called delta 6 desaturase, which is important in converting essential fatty acids Omega-3 and Omega-6 fatty acids to the active form (ARA) arachidonic acid, (EPA) eicosapentaenoic acid, and (DHA) docosahexaenoic acid used by the brain. It is important to avoid Trans-fat and partially hydrogenated vegetable oils. A deficiency of 6 desaturase causes a deficiency of ARA, EPA and DHA, which are important for brain development, brain functioning, brain signaling and proper vision processing. Research has shown that children who have Autism, ADD, ADHD, dyslexia, and dyspraxia may have low levels of 6 desaturase so when they eat foods containing Trans-fat or partially hydrogenated vegetable oils, it can make these conditions worse (1). To increase the activity of the desaturase enzymes, it is important that the diet includes an adequate amount of vitamin B3, vitamin B6, vitamin C, magnesium and zinc which are available by eating local organic fruit, vegetables, whole grains, organic yogurt, and meat, nuts and seeds (2).

Including foods rich in Omega-3 fatty acids cannot be overemphasized. Some basic sources are wild Alaskan salmon, seaweed, eggs from hens fed a diet high in Omega-3’s, flaxseeds, pumpkin seeds, walnuts and algae. Caveat: To ensure food supplements are free of mercury, use either an algae-based or fish oil Omega-3 fatty acid supplement, which is third party-certified and molecularly distilled.

By purchasing organic-labeled products, you’re guaranteed that the foods you’re feeding your family are free of artificial color, flavor, preservatives, trans-fat and pesticides. Not all products have the USDA organic seal because certification is voluntary and expensive. So it’s important to read the labels carefully to know what you’re really buying. To have the USDA seal means a product is comprised of 95 percent organic ingredients. Foods that have at least 70 percent organic ingredients can use the phrase “made with organic ingredients” and list up to 3 ingredients. If the product has less than 70 percent organic ingredients the name of the organic ingredients can be included on the food label.

To get back to basics, incorporate the Real Food Moms three P’s: Plan, Purchase and Prepare real food! This takes a little organization, but you are ensuring delicious, unprocessed food for you and your family. You should definitely see some behavior and long-term health benefits for the entire family.

Get more from the Real Food Moms at their blog!

Stordy, B. Jacqueline. Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. American Journal of Clinical Nutrition, Vol. 71 (suppl), January 2000, pp. 323S-26S

Osmundsen H, Clouet P. Metabolic effects of omega-3 fatty acids. Biofactors 2000;13(1-4):5-8 2000. PMID:15800.

Republished from January 2011

Invisible

November 7, 2011 in Featured, Featured Member by Robert Rummel-Hudson

Like any person with a disability, my daughter experiences a number of manifestations of her condition.  One of them doesn’t appear on any diagnosis document or IEP, but it’s one that she shares with many persons with disabilities.

Invisibility.

It would be easy to argue that Schuyler is an unusually visible kid.  I mean, she’s seen her face in People and Good Housekeeping, after all.  Her story has been a matter of public record since before she was even born.  But as with anyone with a disability, there’s a real difference between being seen and being truly visible.

There are a variety of ways that Schuyler can be invisible.  She’s not autistic, for example, so she’s largely unseen by a lot of advocates and most of the media, who lazily equate “disability” with “autism”.  More to the point, she behaviorally presents as typical, and does so very intentionally and with great care.  She works hard, heartbreakingly so, to mask the outward indicators of her disability.  She wears cool wristbands, the kind favored by skaters and roller derby girls, in order to quickly wipe away the occasional drool without drawing a great deal of attention to herself.  Schuyler uses her speech device when she needs to, but much of the time she puts it away, shunning the message it sends.  Schuyler keeps her disability invisible as much as she can, presenting to the world not so much as a broken kid, but rather as something of a weird one.  And one whose words are mostly inscrutable.

Despite a tremendous amount of progress with her natural speech, Schuyler remains non-verbal.  Regardless of how easy she is or isn’t to understand, Schuyler has plenty to communicate, as much as any eleven-year-old girl in the world.  We have encouraged her from the beginning, and especially since she was five and was introduced to assistive technology, to use as many modes of communication as she can, from verbal speech (mostly vowels, a few soft consonants and inflection, but still surprisingly clear) to sign language, from writing to the world’s longest ongoing Charades game.  She moves through the world carrying a communication toolbox, and if it lacks the one tool she values the most, it is still fairly well-stocked.

In the Lord of the Flies world of middle school, Schuyler’s inability to communicate in a traditional manner leaves her invisible.  The girls in her school swirl in conversation, a never-ending stream of observation and conjecture and laughter that moves too fast for the adults around them.  It certainly moves too fast for Schuyler.  So she walks among them, participates when she can but mostly stands apart.

Schuyler told me something very interesting this morning.  She said that in her dreams of mermaids and fairies (the usual suspects in her dreams), she speaks.  ”Like you and Momma,” she clarified.

She wasn’t sad when she said it, not exactly.  Just… aware.  Aware of her differences, aware of how things could have been in another world.  One that is more fair, one where she is always visible.

————-

Robert Rummel-Hudson’s first book, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs.  It was published in February 2008 by St. Martin’s Press and was released in trade paperback in January 2009. We profiled him in June 2010 in honor of Father’s Day.

He’s written for us a few times and we’re proud to say in the coming months he’ll be a regular contributor 2x a month. You can follow his blog here, at Fighting Monsters with Rubber Swords.

Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Our Amazing Kids with Special Needs

August 24, 2011 in Featured, From Julia by Julia Roberts

I just dropped my kid off at middle school. Two weeks ago I dropped my other kid at elementary school.

This happens in millions of families all over the world. I get that many other families have done the same thing; they’ve prepared by getting supplies, filling out forms and attending open houses at schools.

But I have to let you in on a secret.

I feel my kids are superior. Nothing against your neurotypical kids at all. Not a thing against them, really, but it’s just so much more everything for our families. Yes, I’m speaking for all the families of kids with differences of any kind.

I know for us, we have to prepare our kids weeks in advance to help give them the best start with the least anxiety.

We have to have meetings at the end of the last school for this school year; often reading a crystal ball to head off challenges.

We have to work with our doctors and school nurses for medication.

We have to think about what issues our kids faced over the summer and provide updates and reports to educators.

We have to keep our own anxiety in check. Anxiety about bullies, evaluations/reports, teacher readiness, modification implementation, extra equipment/needs for proper access to education, friendship building opportunities and so much more.

Our kids have to work harder to achieve what comes easy to others so their outlay of energy is greater.

Our worry is greater than it is for typical families. Emotional, financial (private pay therapies, private schools, extra tutoring), social.

We have to work out and worry about transportation of our kids; will they be safe? Are they vulnerable?

The worry we face each day stays somewhat in check day-to-day, but at the beginning of the year it’s heightened. It’s heightened because for our kids to walk in a typical world, which they have to do to the best of their ability every single day, it takes more energy and thought for everyone in the family.

It just does.

I feel a certain superiority on behalf of my kids because of it and I’m not afraid to admit it anymore.

They Like Us, We Really Like Them

April 6, 2011 in Featured, From Julia, Roylco by Julia Roberts

During our Great Big Wish List Giveaway this past November we were lucky enough to work with some great companies and we formed a special relationship with Roylco.

Roylco has a heart for children and their educators and they have some great products for kids with special needs (typical kids, too). We have started a mini-site for our reviews and information! We promise to give you honest opinions (they are providing free toys for community members review) and if we can we’ll throw in how they could be good for kids with differences.

We’ve found that they’re a terrific company to work with and their people are nice. You know how refreshing it is to work nice people who “ooooh” and “ahhh” over your ideas? Yeah, it’s pretty good. We hope you’ll like seeing their products from our real world perspective and we hope you’ll feel inspired to check the toys out for yourself or for someone you love.

So please check out this special site! We’ll also let you know on the home page, on our Facebook page and Twitter feed when there’s something new up!

We’re working on bringing other partnerships like this one to our community as we seek out companies to join us! We hope you enjoy getting to know more about Roylco and their products.

Markers of Time

March 30, 2011 in Featured, From Julia by Julia Roberts

I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.

It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.

One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.

I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.

A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.

A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.

A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.

What are two of your time markers?

 

What’s happening around the community

March 4, 2011 in Around the Site, Featured by Admin Dawn

Remember tomorrow is our first ever In Real Life event but it won’t be our last! Our goal is to give you opportunities to build your support network on AND off-site. We are working on more events for laster this year so stay tuned!

March & April Book Club Book

We’re very proud to announce that we’ve chosen site member Suzanne Kamata‘s anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

The first collection of literary writing on raising a child with special needs, Love You to Pieces features caregivers’ perspectives at every stage in the lives of children with mental or physical difficulties, from premature birth to middle age. In this rich blend of short stories, essays, and poems, families cope with autism, deafness, muscular dystrophy, Down syndrome, other forms of retardation, and more, laying bare the moments of rage, disappointment, and guilt that can color their relationships. Parent-child communication can be a challenge at the best of times,b ut here we see the epic struggles and triumphs of those who speak their own language – or don’t speak at all – and those who love them dearly. Together, the authors paint a beautiful, wrenchingly honest portrait of what it means to care for a child who does not experience the world as we do.

We hope you will join us!

Welcome to our New Members

Aubrey L.: “I have a support group for others affected by premature birth (I was born three months premature) called www.precious-miracles.org as well as special needs (I work as a Care Aide within a school district). I want my website to be a place of support, encouraging words, a listening ear, a shoulder to lean on. Please visit my site to find out all the interesting offerings it has!”

Danielle: “I work in special education and am the proud mother of a child with special needs!”

Heather: “My daughter is 5 1/2 years old, and was diagnosed with CP around 10 months. It has been a long road and just intersted in meeting others with simillar life stories.”

Beth: “I am the very happy mom and 2 boys! Matthew is two and perfectly happy, healthy! Grant is going to be 1 in March and he is perfectly happy and for the most part healthy besides his CP he has! He is doing great and accomplishing so much! These boys bring so much joy to my life!”

Pat Boyle England: “Advocating for kids” and who blogs at septanorthbellmore.blogspot.com

Chaney who blogs at Here’s My Voice

Ann Rounseville: “I am currently a stay at home mom of an adorable 3.5 year old little boy who is diagnosed with PDD-NOS, Global Developmental Delay and Hypotonia. He is non-verbal but has the best belly laugh in the world! I am also expecting a baby in May. Life with our little guy has not been easy and I find meeting other parents of kids with special needs to be so very helpful and important!”

Jaymi Griesmeyer: “I am the mother of three amazing children. My oldest is 7, he is gifted and has generalized anxiety disorder. My second son is 6 and was born with a congenital heart defect and had open heart surgery when he was 5 days old. My youngest is a 3 year old girl who has epilepsy and developmental delays.”

Ginger Adams

Tisha Libbey: “i have a 5 yr old daughter with CP. she is legally blind, has a VP shunt and a G tube for all meals”

Kristy Allen: “Mom of son with developmental delay.”

Jenny: “I have mild Autism. I may even be Aspergers but I dunno. I have a little brother with sever Autism. I’m also a Christian. I’m a greatful believer and follower of Jesus Christ.” Jenny blogs at The World of Mismatched Socks

Deanne Webber: “I am the mom of 2 incredible children”

Have you added your blog yet?

There are lots of ways to help us discover your blog or website:

• You can add your blog feed to our site. Every time you update, we will pull in an excerpt and post it to our Blogging Our Lives Group. It will also show up in our activity feed that updates here and on our front page.

• You can add your blog address to your signature file on your profile.

• Next time you write a great blog post let us all know about it by sharing it as Community News. It will update to the Community News page and go out on our Twitter stream.

 

Joy through special needs

January 27, 2011 in Featured, From Julia by Julia Roberts

The week my daughter was born I had a lot of sadness. I also had greater joy because I was celebrating her birth! A welcomed and loved addition or our little family, I sent an email to friends the day after we got home from the hospital. I said something about welcoming our beautiful daughter into the world. I mentioned her amazing eyes, her long finger and toes and I said how happy we were she joined our family. In the second paragraph I told everyone who loved us about her failing kidneys and said we were sad about that but we needed for people to celebrate her life.

I think, without knowing it, I set up how I wanted to embrace the joys of this new life of parenting kids with special needs before the sadness.

Is the sadness still there? Yes. But are the joys I have sweeter? Probably.

When we asked the community to share their joys I realized that there was a similar theme. We all shared in the miraculous joys of daily mundane (not to us) events like walking and eating. We have and continue to celebrate the milestones our children with special needs. We particularly like typical events like siblings who play and learn from each other, when our kids make friends and when they laugh and smile.

We like to see our children thrive and have pride. Milestones come in many forms. One mom said she got to witness her son learn how to open his eyes – fused since birth – and thought, “Who else gets that privilege?” One mom said, “I once heard that when you have a child with special needs, you don’t just celebrate milestones, you celebrate “inchstones.”

Five or more years ago that I realized I do love to witness the little things (milestones especially) and I was (am) probably even smug about that fact. I reason that my challenges should at least afford me the opportunity to have something over my friends who have children with typical development. I probably should feel bad but I do not.

You know what? I watch my daughter jump up in the air about 4 inches on both feet. That alone probably does not seem that spectacular but it took her nearly 3 years of trying. Therapy. Falling. Frustration. Laughing. When my son, who struggles with confidence, is even a little bit proud of himself, even just a tad, I feel joy. Immense joy.

I’m not afraid to admit the struggles we face make the joys in our life sweeter; sweeter than those of you with typical families.

Special Needs, Special Holidays

December 8, 2010 in Featured Member by Sylvia Ross

Ahhh, the holidays. Time to relax and enjoy having family gathered around you, eating delicious, fattening food before renewing your annual resolution to lose weight, right? Sadly, when you have someone in your life with special needs, it doesn’t always work out that way.

Two days before Thanksgiving 2008, our family received a crushing blow. The baby we were expecting in April was diagnosed with what has been described as “the most devastating congenital defect compatible with life”. Spina bifida. My husband didn’t understand what the doctor was saying. As a nurse, I did. A pall had been cast on the whole holiday season. I had to get through it while worrying about how much it would affect the lives of our entire family. I had to explain to family and friends that we didn’t know how Micah would be affected until he was here and even then we would still have to watch and wait to see what he could do as he grew.

I wanted to hide. But I had a toddler who needed her Mummy to share the excitement of the season and the coming baby. I didn’t want there to be an “elephant in the room” at family gatherings. You know, the thing that is so overwhelmingly big that you can’t help but notice it, and wonder why no one else is talking about it? I didn’t know how friends would accept a “disabled” child. We don’t have family close by and didn’t really have any good friends either, having relocated to Ohio only a year before. My husband works for a school district and shared Micah’s diagnosis with a few of his colleagues. One of the librarians learned of it and after hearing that we didn’t have plans for Thanksgiving, insisted that we come to dinner at her home. I didn’t want to. Our daughter was young enough that she wouldn’t know she was missing out on anything, so why not stay home and not have to talk to anyone? Why not hide from the questions of well meaning strangers? But we didn’t.

I wish I could say I knew we needed to get out and live our lives as usual, but that’s not why we went. We went because my husband, an Aussie, has grown to love turkey drumsticks. And stuffing. And mashed potatoes. And pie. Any excuse to make a pig of himself with unlimited access to food? He’s there. So we went. And I’m glad we did. Yes, it was difficult. Vickie, his colleague, was kind enough to ask her questions about Micah’s health in private, and didn’t share with the rest of the group, so as far as they knew, I was just your average pregnant woman. It helped to know that I didn’t have it written across my face “I HAVE A CHILD WITH SPECIAL NEEDS!” It helped me realize that we will have lots of holidays to celebrate with both kids. Even though Micah has a disability, he has a right to celebrate like everyone else! Christmas was a blur spent with family and friends out of state. I went through the motions, and tried to just concentrate on my daughter’s pure joy over all the pretty presents, lights and fun.

It’s nearly two years later–and Micah has surprised us all. We didn’t know if he would even be able to stand on his own. He not only stands, he loves using his walker to chase his big sister. It has not been easy, though. So far, we’ve been through 7 surgeries and spent our 9th wedding anniversary, Palm Sunday, Easter, the 4th of July, and my birthday in the hospital, courtesy of those surgeries. How do we handle it? Honestly, first I cry. Then, I try to replace the tears with laughter. I bring in treats for the nurses who have to work those days. They don’t exactly want to be there either. My husband brings us food from our favorite restaurant since we can’t get there. Our favorite drinks taste just as good from a disposable plastic cup as they would from an expensive crystal goblet, right? When friends and family offer to help out, I try to find some way to let them help–accepting help is so important when you have a special needs child! One friend in particular brought me a pint of my favorite sorbet when I had to spend my birthday on the rehab floor with Micah, who was recovering from spinal cord surgery. She sat there and enjoyed her own pint of sorbet with me, since my husband was on a business trip. Was it how I wanted to spend my birthday? Oh heck no! I would have chosen to spend it at a fabulous spa being pampered and massaged and treated like a queen! But my little man needed me, so there I was. Sitting on the pull-out couch eating sorbet with a plastic spoon and laughing with a friend.

What have I learned from having kids with special needs? You really have to be flexible in every area of your life. If something isn’t going the way you wanted it to, don’t fight it. Accept it, and make the best of it. Celebrate, no matter what blow you’ve been dealt. As a youth pastor of mine used to say… fake it ’til you feel it. You’ll get there. And your family will thank you.”

Great Big Wish List Giveaway: Therapy Shoppe

November 17, 2010 in Giveaways by Admin Dawn

Therapy ShoppeOne of our very first sponsors for our very first giveaway was The Therapy Shoppe. If you are looking for gifts this holiday season that are fun and helpful or need to find something special for your child’s teacher to use in the classroom, they should be your first stop. Toys are clearly organized to let you find just the thing for whatever challenging your child is facing and if you’re still not sure, you can take advantage of their terrific customer service and contact them to get some direction.

For the Great Big Wish List Giveaway, the Therapy Shoppe is giving (note: we are using their product descriptions):

Daisy Peg Playset: Especially nice for traveling therapists, this peg set is grand for 1:1 therapy, home, classroom workstations, or on-the-go play. Features 240 pegs, a built-in sorting tray with 6 compartments for organizing the pegs, and a “locking” storage unit that stores all the pegs underneath the daisy-shaped pegboard. You’ll love it! 11″x11″.

String Along Kit: Therapists, parents, and teachers RAVE about this FABULOUS toy!!! This dynamo lacing/stitching/punching kit works on building bilateral, eye-hand, fine finger, design copy skills and correct pencil grasp; while providing proprioceptive input to fingers/hands! Kids can create their own designs or follow one of the kit’s 16 colorful pattern cards to make gorgeous pictures/patterns! Pick a string, thread the Punch Pen then “punch and pull” a colorful design. The extra super sturdy design board, kid-safe Punch Pen, and 18 bright laces will provide infinite hours of lacing fun for individual children–or all the kids on your caseload! This reusable “picture perfect” set is truly exceptional!

Soft Foam Lacing Beads: Velvety soft lacing beads in 5 pretty colors and 3 fun shapes! These durable, chunky lacers are nice for sorting, patterning, stacking, color/shape recognition, and tactile discrimination. This very tactile set includes 48 beads and 2 deluxe laces; packed in a sturdy plastic container.

Wikki Stix Book of Wiggles, Squiggles & Curlicues: This darling hands-on, interactive “board book” features 15 pages of charming rhymes and fun illustrations with something missing! Kids complete the colorful pictures using specific colors of Wikki Stix by following simple directions incorporated on each page. A delightful way to help little ones build their fine finger and eye-hand skills while learning their colors! Comes with 36 assorted Wikki Stix.

Learn to Dress Monkey: This lovable 22″ plush monkey is the perfect toy for developing fine finger and dressing skills! Features removable socks, sneakers, a t-shirt, and denim overalls that are fun for on/off dressing practice. Kids love putting on his (real) stretchy socks, lacing up his colorful sneakers, buttoning his pockets, snapping his straps, zipping his pocket and more… there’s 11 different dressing skills in all! This colorful, snuggly little monkey makes a wonderful bedtime buddy, too!

So how do you win? Since we think Therapy Shoppe is an especially great site for those who love and support our kids with special needs, we wanted your help in honoring the friends and family who make your life better. Head over to our Friends & Family forum and tell us here about the person (or people!) who make your life just a little bit easier! (And then let them know that they are welcome to be part of the site, too!)

Comments are closed to remind you to comment here for your chance to win!

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