Music and Movement for Children and Adults with Special Needs!

When she unexpectedly gained better seizure control, I wanted to help her build up her atrophied muscles and what better way to do that than through music and movement activities!

In my research, I discovered that music, movement, and creative self-expression can greatly enrich the lives of children and adults with autism and other developmental disabilities in more ways than one!

Combining music with movement doesn’t just get the body moving!

It engages several areas of the brain and benefits people with disabilities in other great ways as well.

A recent study indicates that participating in musical experiences can have a favorable impact on speech and communication skills and in the social, emotional, behavioral, and motor development of children on the autism spectrum as well as children with other developmental disabilities (Srinivasan and Bhat, p.5, 15).

Participating in musical and movement programs with others could be a small step in the right direction for improving the social, emotional, and physical well-being of children and adults with developmental disabilities.

Music and movement activities offer participants the opportunity to practice speech and communication skills, make eye contact with others, and socialize.

But perhaps most importantly they foster the development of real and meaningful friendships as participants begin to recognize and look forward to seeing each other on a regular basis!

Rhythm Instruments activities which includes clapping, marching, and walking to music, promote muscle and motor coordination and assists in the development of gross and fine motor skills. Synchronous movements during our rhythm activities may also help participants to feel a sense of belonging to the group (Srinivasan and Bhat, p. 9, 12).

A study conducted by Phyllis Weikert suggests that the ability to keep a beat is also linked to language development and encourages cross lateral movement which in turn causes the brain to cross the mid-section, a skill necessary for learning to read and write (Harman).

Musical Scarf dance routines promote creative movement and healthy self-expression, boost self-esteem and self-confidence, promote emotional understanding, and encourage cross lateral movement as well.

Bean bag activities promote gross motor movement and muscle strengthening.

Opportunities for practicing social skills, social interaction, and turn taking are also presented. Again as an added bonus they also encourage the brain to cross the mid-section by implementing cross lateral movements.

A few of the possible positive effects of participating in any music and movement program could be:

• An increased attention span
• A decrease in self stimulatory behaviors
• Improved cognitive functioning
• An increase in socialization
• An improved behavior and mood
• An increase in self-expression
• Improved auditory processing
• An improvement in fine and gross motor ability
• A boost in self-esteem and self-confidence
• An improvement in language and communication skills
• A decrease in anxiety
• An improvement in muscle strength
• Improved academic functioning (American Music Therapy Association)
• Increased eye contact

I am not a physician, nor am I a licensed therapist. I make no claims that participating in any music and movement program will cure participants of any disability, illness, or obesity.

Work Cited:

Harman M.A., Maryann;   Music and Movement- Instrumental in Language Development

Srinivasan, SM and Bhat, AN; pp.5, 9, 12, 15   A Review of Music and Movement Therapies for Children with Autism: Embodied Intervention for Multi-system Development

A Day in the Life of a Special Needs Mom and Dad

Our court date was fast approaching!

This was the only day we had available to file these papers before it might be too late and our court date would be postponed

My husband, Malcolm had taken the day off work for that very purpose!

Kristin, Bethany’s assistant arrived to look after her while we were out and about! 

She took her place on the couch next to Bethany, who was hiding beneath her spiderman blanket!

Malcolm and I were then free to take our leave and go to the bank to get our papers notarized then filed.

Of course, when you’re a special needs family, nothing can be just as simple as following the plan, right?!

When we got to the bank, Malcolm realized his driver’s license wasn’t in his wallet and we could not proceed with our plans without this form of  photo identification, so we trekked back home to search for it.

This was going to waste precious time!

He had no idea his license was missing, or for how long it had been missing, so obviously, he also had no idea how long he’d been driving around without his license!

We searched high and low but couldn’t find it anywhere.

At this point, I became quite distressed.

I was angry, disappointed, depressed, and despondent!

I almost had a panic attack. I had visions of this problem delaying our plans to get the application filed on time.

The whole guardianship process can take up to six months to complete, so the application needed to be filed six months before Bethany turns 18, which was exactly 6 months from that day!

Since we could not find Malcolm’s license anywhere, we were now going to have to waste even more precious time going to the DMV so he could order a new license.

He was issued a temporary license to use but it didn’t have his photo on it!

I wasn’t at all sure the notary person would accept an ID with no photo!

If she didn’t accept his temporary ID, we would have to wait until his new license came in the mail, which could take weeks and Malcolm would have to arrange getting another day off. He works in a teeny, tiny post office where he is the only employee and is rarely ever permitted a day off!

To make a long story just a wee bit shorter…

We got Malcolm’s temporary license and went back to the bank where the notary person did accept it and she notarized our application.

We high tailed it the 25 miles over hill and dale to the surrogate court, in the county office building, where we successfully filed our 17A special needs guardianship application on time!

What a relief!

What a sense of accomplishment!

Then we redeemed the day by taking a stroll through the Fly Creek Cider Mill where Malcolm sampled some hard cider and we bought two pieces of fudge to share!

Sports Opportunities for People With Special Needs

While most people have the cognitive and physical ability and freedom to choose an activity that looks like fun and go for it, those with unique special needs may not be able to participate so easily, especially in sports!

Sadly, too many people with special needs and disabilities don’t have the luxury of getting themselves out into the community to participate in sports or other activities that the rest of us just take for granted.

Finding sports opportunities that special needs individuals can easily and comfortably participate in often poses quite a challenge!

Yet everyone, including those with special needs and disabilities should be afforded the opportunity to participate in the sport of their choice!

There are three things that some individuals with disabilities or special needs may require to be able to fully enjoy and participate in community sports opportunities:

1 – The assistance and supervision of another responsible adult to ensure safety.
2 – Special understanding and accommodations.
3 – Physical modifications to the environment or equipment.

Many people with special needs do much better participating in sports opportunities designed and created especially for people just like themselves, who share similar special needs.

Some children and adults with special needs may require a bit more structure, supervision, assistance and accommodation in order for sports participation to truly be enjoyable experiences.

Below is a list of agencies and sports programs in the US and UK for those with special needs or disabilities:

1) For an extensive list of special needs sports opportunities in the UK, check out The National Disability Sport Organisations.

2) Horizon Sports Club (UK) is a registered charity which provides a unique after-school sports club for children and young people with disabilities, living in South Buckinghamshire, the opportunity to develop both physically and socially through the enjoyment of sport.

3) ABLEize (UK) is the largest disabled recreation and sports resource on the Internet

4) Oxfordshire Sport and Physical Activity (UK) also has a lengthy list of special needs sports opportunities available on their website.

5) Disabled Sports USA provides adaptive sports opportunities for people with disabilities to develop independence, confidence, and fitness through sports.

6) The Miracle League (USA) provides opportunities for children with disabilities to play Miracle League baseball, regardless of their abilities.

7) Surfer’s Way (USA) is a non-profit organization designed to offer children with special needs the opportunity to experience the exhilaration and liberation of surfing.

8) Educated Sports Parent (USA) has a long list of special needs sports organizations available on their website!

Special Clothing for Special People

Manipulating buttons, zippers, and snaps can pose quite a problem for many individuals with special needs who would like to become more independent by being able to dress themselves.

Likewise, parents of children with disabilities and special needs who may never be capable of dressing themselves, often find trying to dress their children in clothing designed for the non-disabled to be difficult and cumbersome

Those with sensory processing disorders can find standard clothing irritating and uncomfortable.

Seams, certain fabrics, and tags can make traditional clothing a nightmare for people with sensory processing issues

For these individuals, adaptive clothing may prove to be very helpful!

Adaptive clothing is specialized clothing designed with the unique needs of individuals who may not have full range of motion, the ability to dress themselves, or who have sensitive sensory systems.

Modifications made to  traditional clothing designs could include:

Replacing buttons and shoelaces with velcro

Placing closures on the back rather than the front of garments

Front closing bras

Side opening pants

Clothing made with special fabrics

Seamless socks

Tagless shirts

Weighted vests

Compression leggings

If you or someone you know could benefit from adaptive clothing and would like to purchase some specialized garments, here are a few tips to keep in mind while shopping:

  • If you are shopping for someone else, be sure you know what types of modifcations that person needs and wants, their size, and color preference.
  • Also, try to take that person along with you if possible, so they can pick out clothing that appeals to them.
  • Make sure the items you choose are similar to the popular styles you see people wearing today.
  • Be sure the article of clothing is sturdy and made to last, so look for high quality fabrics.
  • Look for soft fabrics

 

Below are a few resources for Adaptive Clothing:

For a list of special needs clothing resources please see this list on The Disability Information and Resources website.

For a list of special needs fashions for children, check out the list on the Children with Special Needs website

Adaptaware: Clothing for Care (UK)

Rackety’s: Clothing for children and adults with disabilities

Adaptive Clothing Showroom: Clothing for disabled adults and children

Tommy Hilfiger’s Runway of Dreams: Adaptive clothing for kids

Tummy Tunnels: Clothing for kids with feeding tubes

More resources for kids with feeding tubes

Silvert’s: Wheel chair clothing for men and women

Kozie Clothes: Adaptive medical and sensory clothing

EZ Sox and Undeez: Socks and underwear for sensory kids

Independence Day Clothing: Adaptive clothes for teens, tweens, and young adults

Keeping Kids With Special Needs Safe

We put locks on all cabinets containing poisonous cleaning supplies, and we place every sharp kitchen knife way up high, out of sight on top of our highest shelf!

When we find out our kids have special needs, keeping them safe becomes a whole different ball game altogether!

Safety proofing a house for our special needs kids can pose quite the challenge!

Our kids may not mature mentally and emotionally like typically developing kids do, but their bodies mature and grow bigger, stronger, and more physically adept just the same.

One day before we know it, our special needs kids will be climbing over the baby gate, figuring out how to unlock the cabinet where the poisonous cleaning supplies are kept, and suddenly one day, they’ll somehow figure out that they can climb up to the top shelf where all the sharp kitchen knives are kept!

The problem is, even though they are physically able to do all that climbing and figuring out, they don’t understand that they can get hurt or even die while doing so.

Many of our special needs kids just do not understand the meaning of danger and many never will!

Many of our kids are escape artists and wanderers, too!

And it’s our job as their parents to protect them and keep them safe.

Try as hard as we might however, it is literally impossible to be supervising and watching our children every single second of every single day!

Never fear however, because there are safety measures you can take and products that you can purchase to make your home and yard a safer place and that will ultimately keep your child safer.

So how can we keep the house and yard safe for our precious kids with special needs?

Install safety bumpers on all doors so that fingers don’t get pinched.

Use a baby monitor system when you can’t be in the same room with your child.

Move all breakable, fragile and/or valuable items out of sight and reach of your child.

Install padlocks on all cabinets containing medications and poisonous or otherwise dangerous items.

Purchase a special needs safety bed to keep your little night owl safe while you sleep.

Another option for little night owls is to install a dutch door on your child’s bedroom – leave the top half open so your child does not feel so confined, (if he’s not a climber) and so you can see what’s going on inside!

Install locks on all doors to rooms that are off limits to your child. This could even include bathrooms if necessary!

Put locks on all windows.

Install window and door alarms that will alert you if your child opens them.

Install a tall fence with locked gates around your entire yard and pool if you have one!

Purchase a Perimeter System and establish physical boundaries for your child. If he moves beyond the boundary an alarm will sound off.

Provide your child with a GPS locating device.

If he or she does manage to wander off or get lost, you’ll be able to find him or her quickly and easily.

Far too many special needs parents feel as if they can never let their guard down.

They feel as if they’re on hyper alert all day, every day, 24/7 making sure their precious special kids are safe and sound at all times.

But even special needs parents need to be able to relax in their own homes once in a while…

By implementing some or all of the above measures, I guarantee you’ll be able to loosen up, decompress and let your guard down, if even just a little!

Five Nutritional Challenges of Special Needs Children

Some of our children can’t eat all, while others can’t stop eating!

Below are five common nutritional challenges that children with special needs and their families face, along with a few suggestions that may help combat these issues.

1) Being Dangerously Underweight

Some children with special needs are underweight for a variety of reasons.

Some kids are just too sick and/or depressed to eat.

Others may have swallowing difficulties and others still may have metabolisms that burn their calories at a rate so fast that they just keep losing weight.

For these special kids a feeding tube and/or feeding therapy can prove to be life saving and life sustaining.

My initial introduction into what would become the first of many feeding problems for my daughter Bethany, was her total refusal to eat anything after her brain tumor surgery.

For weeks she was totally uninterested in eating anything other than breast milk. She began losing weight at an alarming rate!

Her doctor wanted to insert a feeding tube through her nose and down into her stomach to fill her tummy with life sustaining liquid nutrition!

I was afraid the formula would satisfy her hunger to the point that she would never want to eat again. Thankfully, my fears were unfounded!

After the feeding tube was placed, she gained weight, began to feel better and became interested in eating real food once again!

2) Obesity

Some kids with special needs lead very sedentary lives and as a result become overweight.

Children confined to wheelchairs or those who have limited mobility and can’t get much exercise may have a hard time maintaining a healthy weight.

Getting our kids moving as much as possible, providing healthy fruits and veggies as snacks, and limiting sweets and chip consumption can help inactive children keep their weight down.

Bethany suffered with an extreme seizure disorder and spent twelve years unable to do anything more physically taxing than walking from her bedroom to the bathroom and over to the couch to lie down.

Needless to say, through no fault of her own, her inactive lifestyle caused her to gain some weight.

When a new medication decreased the number of seizures she had, Bethany was able to be more active and it was easier for her to maintain a more healthy weight.

3) Picky Eaters

Many children with special needs, especially those on the autism spectrum and those with sensory issues are extremely picky eaters!

Some children will only eat certain textured foods, while others may only eat foods of a certain taste or color!

With diets like that, malnutrition is a valid concern.

Offering rewards for trying new foods might help.

If you suspect your child’s eating problem is a sensory issue than  a consult with an Occupational Therapist might be in order.

In any event, picky eaters don’t get total nutrition from their food, so they need to take a good multivitamin!

Bethany gets on these month long stints where she eats nothing but one thing over and over and over again for breakfast, lunch, and dinner.

She rotates between pasta with tomato sauce, bean tacos, salads, and just plain old cucumbers!

A multivitamin and mineral supplement is a must in order for Bethany to be as healthy as possible!

4) Medication side effects

Many of our children with special needs experience medication side effects that can cause increases or decreases in their appetites.

If you suspect that a medication is causing your child’s eating challenges, I urge you to research all possible side effects and report your findings to your child’s doctor.

It may be that another medication can be substituted.

Unfortunately though, sometimes doctors believe the benefit of a medication outweighs any side effects it may cause.

If your child is in this situation, keeping him or her as active as possible and providing low calorie meals and snacks is your best bet for managing medication weight gain.

Topamax, one of Bethany’s seizure medications, literally made her stop eating. She lost so much weight that she became dangerously thin.

So we tried switching her medication to Depakote, which then made her gain so much weight that she was well on her way to becoming obese!

We had to switch her to yet another medication which thankfully helped control her seizures as much as the others had and did not effect her appetite at all!

5) Genetics

Some specific disorders in and of themselves can cause nutritional problems for kids with certain conditions and place them at a higher risk for obesity.

Among such disorders are: Down syndrome, Spina Bifida, Autism Spectrum Disorder, Prader-Willi syndrome, Cohen syndrome, Carpenter syndrome, Borjeson syndrome and MOMO syndrome.

For disorder specific nutritional challenges, I would suggest googling and consulting with your child’s doctors and therapists.

Whatever our children’s specific nutritional challenges may be, I cannot stress enough the value of keeping our kids as active as possible, filling them up with healthy fruits and veggies and keeping track of their calorie consumption!

Inspirational Quotes for the Special Needs Parent!

On the other hand, being the parent of a special needs child can also be fun, happy, exhilarating, invigorating, energizing, exciting, fantastic, and amazing!

Special needs parents live their lives on an emotional roller coaster.

When things are going good and our kids are happy and healthy we have our mountaintop experiences.

At other times we may find ourselves down in the lowest valleys.

Sometimes we need a little help climbing out of our valleys of despair and despondency and for that very purpose, I’ve put together this little list of 15 inspirational quotes for special needs parents. Some of them are even my very own quotes!!

“Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.”- Author Unknown

“Some of our kids got a bum deal in life and I know it might seem impossible, but try as hard as you can to turn your child’s crappy into happy”- Sylvia Phillips

“As special needs parents we don’t have the power to make life, “fair,” but we do have the power to make life joyful.”- Author Unknown

“Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s going to be a way through it.”- Michael J. Fox

“Every tiny little step forward is a major accomplishment to special needs parents and cause for celebration!”- Sylvia Phillips

“Life is tough, my darling, but so are you.”- Stephanie Bennett Henry

“Listen to the experts. Glean what works for you and your child, but remember, ultimately, you are the expert on your own child. No one else.”- Sylvia Phillips

“We must be willing to let go of the life we have planned so as to have the life that is waiting for us!”- E.M. Forster

“Buck up, Buttercup”- Author Unknown

“Celebrate and cherish all of life’s ordinary, everyday, precious little moments” -Sylvia Phillips

“People with special needs are not as different from you and me as you might think. They want the same things we want: to love and be loved, and to be accepted, appreciated, and included.”- Sylvia Phillips

“Knowledge of what is possible is the beginning of happiness”- George Santayana

“Hang on tight and get ready for the wildest, saddest, happiest, most challenging and most rewarding ride of your life!”- Sylvia Phillips

“In the end, I am the only one who can give my children a happy mother who loves life.”- Janene Wolsey Baadsgard

“Always hope for a miracle, but don’t ignore the reality of the situation.”- Sylvia Phillips

How To Be A Great Friend To A Special Needs Parent

We are often emotionally drained and physically exhausted.

We don’t have much time or energy to put into nurturing friendships.

But that doesn’t mean we don’t want to have friends!

On the contrary…special needs parents want and desperately need friends.

But it takes a special kind of person to be the type of friend that a special needs parent really needs.

Do you have what it takes to be the friend of a special needs parent?

Because, let me be perfectly honest here, most special needs parents are, well, quite needy and chances are they always will be!

So what exactly do special needs parents want and need from their friends?

I certainly can’t speak for every special needs parent, but I can tell you eleven things that I need from a friend!

1. I need friends who are willing to understand and accept that my child will always be my number one priority.

She will always take up most of my time and energy. So please don’t get your feelings hurt if I can’t meet you for lunch or attend your dinner party.

2. I need friends who understand and accept that my child’s disabilities are not curable.

Our situation is not going to change much over the years. So please don’t get your hopes up too high that someday I may be able to meet you for lunch or actually ever make it to one of your dinner parties.

3. But I also need friends to keep inviting me out to lunch and to their dinner parties.

Despite the fact that I repeatedly turn them down. I just might actually be able to make it once in a while!

4. I need friends who are willing to understand and accept that most of the time, if they want to get together with me, it may have to be at my house, on my terms, or I might need to bring my child along on an outing.

5. I need friends who will acknowledge the seriousness and gravity of my child’s disabilities and chronic illness.

Please don’t roll your eyes behind my back or secretly think I am exaggerating or making up my child’s condition. 

6. I need friends who will encourage, support, and pray for me and my child in my efforts to provide the happiest and healthiest life for her.

7. I need friends who will respect the decisions I make about and for my child and not assume they know what’s best.

Please don’t try to convince me to try this, that, and the other miracle cure you’ve recently read about, because chances are that I already have!

8. I need friends who will just be there for me when I’ve had a hard day and need a shoulder to cry on.

Please don’t try to offer solutions to my problems or spit out spiritual platitudes. I just need someone to listen!

9. I need friends who see when I’m overwhelmed and offer to help with practical matters.

Do you see the dishes piling up in my sink? Don’t ask me if I want you to wash them.. just start washing them!

10. While I certainly don’t expect my friends to do all my housework for me, I do expect that if you offer to help, that you will do it.

11. And finally, I need friends who like my child and treat her with the kindness, dignity and respect that she so rightly deserves!

 

A person who truly loves you will never let you go no matter how hard the situation.”   – kushandwisdom.tumblr

I get by with a little help from my friends.”- The Beatles

One of the most beautiful qualities about a true friendship is to understand and be understood.”- Lucius Annaeus Seneca

Nighty Night: Getting Our Special Needs Kids to Sleep

Obviously, our daughter couldn’t sleep that very first night in hospital because she was terrified!

She was hooked up to all kinds of frightening life saving machines and monitors and was not allowed to nurse for the very first time in her life!

I couldn’t sleep because I was terrified she might die and it was killing me that I had to repeatedly refuse her attempts to nurse.

There was absolutely nothing I could do to help or comfort my very precious and very sick baby.

Over the years, at the suggestions of Bethany’s doctors we’ve tried many ways to induce, promote, and help her stay asleep!

The first suggestion was to give her Melatonin about an hour before bedtime.  I have to admit that it did help her fall asleep at a decent hour, but it didn’t help her stay asleep all night.

Plus, it also made her very grouchy the next day. We gave up on it!

The second suggestion was to give her Benadryl. Unfortunately, this medication did the opposite of making her sleep. It made her hyper and aggressive!

We only tried that once!

I’m sure we tried another medication or two, but I don’t remember what they were called and they didn’t work well enough to keep her on them, either.

And anyway, I felt like she was already on too many medications, what with taking three just to try to control her seizure disorder, so we decided to stop trying medications to get her to sleep.

I was getting kind of desperate to get Bethany to sleep through, because I was the one who had to stay awake with her.

Because of her unpredictable seizure disorder and her lack of understanding the concept of danger she needed and still needs total supervision while awake!

One day, during a desperate online search for better, more natural sleep inducing methods,  I came across the term, sleep hygiene.

It sounded very professional and very promising!

Basically, sleep hygiene is a bunch of practices that if followed routinely, should assist in helping anyone get a better night’s sleep!

I quickly found out that we had been allowing Bethany to break two of the most  important rules to getting a good night’s sleep!

We were letting her watch movies and play on her iPad in bed and allowing her to take cat naps during the day!

I’ll be the first to admit that both of those habits were hard to break, but once broken, Bethany did start sleeping better and thus so did I!

Below are a few tips recommended by the sleep hygiene experts that you can try to help your special loved one get a better night’s sleep:

> Eliminate caffeine from their diet.

> Don’t allow snacks, especially sweets after dinner.

> Be sure your child gets plenty of vigorous exercise each day, but not just before bedtime.

> Be sure your child has adequate exposure to the daylight hours.

> Establish a calming bedtime routine.

> Make the bedroom a pleasant and calming place.

> Do not use bedrooms as time out or punishment spaces.

> Wake your child up and put him to bed at the same time everyday.

> Don’t allow screen time in bed.

> And the hardest one for me to follow: don’t allow daytime naps!

I won’t claim that following the above procedure has been the perfect solution to all our sleep problems, because Bethany also battles against the seizure medication side effect of insomnia and the seizure clusters she experiences wreak havoc on her sleep routine.

But, I can attest to the fact that following these simple sleep hygiene rules when we can, has improved Bethany’s ability to sleep and therefore mine, also!