Music Therapy

logo-multi-coloredAs a traveling music therapist, I spend all day driving through the Texas sun, hauling guitars, drums, and tambourines from house to house, but still the hardest part about my job is answering, “What is music therapy?”. The American Music Therapy Association (AMTA) defines music therapy as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program”.

…Am I watching an episode of ABC’s Lost because I feel like I have more questions than answers after reading that definition! Don’t worry, because I am here to break down that definition and give you as many answers as possible about the field in which I work.

First things first, what do music therapists do? My go-to answer for this question is to compare it to something everyone knows. Music therapists are similar to physical therapists, speech therapists and/or occupational therapists in that we are working with clients to improve their quality of life. The areas mainly focused on are physical, emotional, cognitive, and social needs. Through music therapy, clients learn social and communication skills; they learn how to appropriately express themselves through improved emotional processing; they can increase fine and gross motor skills; even stress and pain management can be learned through music therapy treatment. We are not teaching people how to play instruments, but rather using music as our therapeutic medium to increase those areas that are deficient in the clients lives. This would be the “clinical use of music interventions to accomplish individualized goals” of the definition.

The second most common question is who can benefit from music therapy? The short answer: anyone! Really, it’s true. Music therapists across the US and throughout the world work with clients in all types of settings and with all types of needs, ranging from dementia to mothers in labor. AMTA has an excellent definition of who can benefit from music therapy. They say “Children, adolescents, adults, and the elderly with mental health needs, developmental and learning disabilities, Alzheimer’s disease and other aging related conditions, substance abuse problems, brain injuries, physical disabilities, and acute and chronic pain, including mothers in labor all benefit from music therapy”. So going back to the short answer, anyone with a general desire and enjoyment of music can benefit from music therapy treatment. With that being said, there is a common misconception that you have to be musical or have “musical talent” to benefit from music therapy, but that is not the case. Again, we are not teaching music, we are using the therapeutic properties of music to increase skill areas.

Once someone learns about music therapy and what we as therapists do, the last question is usually where do you work? This is different for every therapist. I myself work through the Medicaid waiver program – CLASS – providing one on one, in-home services for children and adolescents with developmental and learning disabilities. I have also been contracted through school districts here in Texas to work with a few children with developmental and/or learning disabilities whose parents have requested music therapy to be incorporated into their child’s Individual Education Plan (IEP). And finally because I enjoy working with the elderly, I reached out to some local rehabilitation centers and am contracted through four nursing homes in the Austin, TX area to provide monthly group sessions for elderly dealing with dementia and Alzheimer’s disease. This may seem like a crazy set up, but I’m pretty sure my situation is the exception. Other therapists have private practices where they have a studio and all their clients come to them. Still other full time therapists work solely in hospitals, one school district, a nursing home, or a psychiatric facility.

26405985456_a981fb8765_oGoing back to that initial definition, the “credentialed professional” is indeed the music therapist. We, as certified music therapists, do have to obtain at least a four year degree in music therapy. Most of us leave college with a bachelor of science in music therapy. We are trained heavily in music theory and music therapy as well as biology, psychology, social and behavioral sciences, and general studies. After we have completed all the course work, we are required to complete an AMTA approved internship usually lasting 6-9 months depending on when the student completes the required 1200 hours of clinical experience. Lastly, we are required to pass a board certification exam to become a board-certified music therapist (MT-BC).

Throughout this article, I have continuously referenced the national association, AMTA because they do a fantastic job informing people who we are and what we do as a profession. If you have any remaining questions about music therapy, www.musictherapy.org is a great place to start. You can find therapists in your area, see where they are working and whether or not music therapy is funded through a waiver program or an insurance provider. I also have a website if you would like to know more about me or are in Austin and want to learn more about what I do in the area. Roads of Connection Music Therapy is where you can find my information. It’s common for people to still have questions about our field, don’t hesitate to contact a music therapist in your area to gain more insight.

Contributed by Danielle Baumgartner, MT-BC

Here is your sign…

Do you have a medically fragile child in your home?

Making guests/visitors remove their shoes before entering your home and wash their hands before any contact with your child can be difficult to communicate.  Why not get creative?  You can create fun collages, use computer clip art, posters or even yard signs that ask guests to respect your house rules and protect your child.  You can also create a small “STOP” sign in your front entry way that lists out your requests for visitors.  Have a nice place for guests to place their shoes, and have a bin of new socks available to give to guests to wear (bare feet can be as dirty as shoes, especially in the summer).  This isn’t about offending guests…it is about keeping your child healthy – so don’t be afraid to come up with effective ways to communicate your child’s needs to anyone who enters your home!

I learned a long time ago, my child’s health and well being are a lot more important to me than potentially hurting someone’s feelings that may put my child at risk. It’s not personal- it’s just what has to be done!

Here is a great sign that is free to download & print:

Use your Noodle!

As soon as something is labeled as medical the cost immediately jumps up. There are so many things that families need and use that don’t necessarily have to be “medical” to work, but they do need to be affordable.

Many of us worry about our kids falling out of their beds once they move out of the crib. Yes, there are medical beds that are AMAZING. Some have side walls, hydraulics to lift or lower, some even have roofs to help with elopement. But for many of us, we don’t need that much. We just need something to make sure that they don’t roll over and fall to the floor.
You can find all kinds of options in baby stores, on Amazon, Target, etc. These range from $20-a few hundred dollars depending on how fancy you get. There is a much easier and cheaper option. Pool noodles! Some places sell extra thick pool noodles too that are even better. I know Walmart usually carries the thicker ones during the summer months. You simply tuck these under the fitted sheet and presto you have bedrails. If you or someone you knows can sew, you can even sew the noodles into place so that they don’t move around.

Here’s another great use for pool noodles- a sensory pool. If you buy a handful of noodles at the end of the summer when stores just want to get rid of them you do this project super cheap. All you need is pool noodles and a kiddie pool (also cheap to grab at the end of the summer). Cut the noodle into slivers about 3 inches long. A noodle is typically 5-6 feet which gives you 20-25 pieces per noodle. You can use a variety of colors too. Depending on the size of the pool you select you may need more or less noodles. Just cut them up and toss them into the pool until it is filled to the depth of your choice. When you are done you will have an affordable ball pit that is sure to please.

Pool noodles can be used as (or for):
– Positioning rolls (cut to size)
– Slipped under fitted sheets to prevent a child from rolling out of bed
– Cut into discs for large game pieces
– Cut into discs and thrown into a drained/dry child-size swimming pool for a “ball pit”
– Cut into discs of varying size and thrown into a storage bin for a sensory activity
– Physical therapy exercises (lift above head, pick up, put down, wave back and forth…)
– Split in half lengthwise to place over sharp edges on dressers, tables, etc.
– Cut into varying sizes using various colors to use as a sorting activity

Gentle (non-trach) Suctioning

If you have to suction your child, even just on occasion, you know how hard the suction catheters and tips can be. The suction catheters are hard plastic narrow tubes that we use to go in a trach, or into the airway through the mouth or nose. When we used these with Casey she did not have a trach so we would feed them through her mouth, into her throat to find whatever it was that we needed to clear for her. She needed suctioning a LOT. When we had to use the catheters frequently we would not be surprised when we would see spotting (small amounts of fresh blood).

Then there is the yanker, ugh that thing is awful! In the hospital when Casey was a baby they had these wonderful soft tipped oral and nasal suckers. Luckily the hospital sent us home with a handful. When our DME sent us our monthly suction supplies I was horrified that they wanted us to use the long hard plastic yanker with the huge claw at the end. No way!!!!

We found the number on the soft tips from the hospital and called the company that makes them. Neotech quickly became our favorite company (and still is). They sent us samples and then they worked with our DME to make sure that we could get the soft tips, and that insurance would cover them. If you need help getting the softer tips, call Neotech and see if they can help you as well.

Once we got the soft tip issue resolved we still had to deal with the hard catheters. Then one day we had been admitted to the hospital and our nurse did something I had never considered. Casey did NOT have a latex allergy- if your child does have a latex allergy this is not an option for him/her. Our nurse pulled out these soft, flexible, red catheters. The catheters were not for suctioning, but were general purpose (mainly used for help with urination). These catheters also did not have the numbers on the side like the suction catheters nor did they have the thumb valve, so at first I was a little unsure about how she was going to get these to work. The wide end of the catheter slipped perfectly over the end of the soft suction tip (letting us use the sucker as the thumb valve). Then we fed the catheter down Casey’s airway just as we did with the hard plastic catheters. Since we did that so often we knew how far to go without needing the numbers.

We needed a letter from our doctor explaining why the general purpose catheters worked better for Casey than the suction catheters, but once that letter was sent to insurance everything was covered. From then on, all of our suction tools were gentle and there was no more spotting.

Things to Know if You’re on the Go

We all spend plenty of time in the car, in waiting rooms, etc. Sometimes you may leave the house and pack enough to be out for 2-4 hours then find yourself still long for home after 6 or more hours. If you have a child with medical needs along with you it can make any outing more challenging. Here are a few tips that can help.

If your child does not do well sitting up for long periods of time and you have to travel or spend more time that your child can tolerate in the car there are some car safety options that a lot of people don’t know about. One is called the E-Z-On Vest. This car seat harness will allow your child to lay down on a bench seat while still be safely secured. If you have a smaller child you may be able to use laying down car seats like the Hope Car Bed. There are a wide variety of special needs car seats that allow for more reclining than typical car seats and that provide additional support in select areas for children that need it.

Carry a stuffed animal, or a few. Different shaped stuffed animals can be used as positioning devices, to hold tubing, I’ve even used them to mop up a spill with there was nothing else available. I can’t even count the number of times we used them as pillows when the exam rooms didn’t have pillows on the tables.

Wipes can be super handy too. If course there is the obvious use with cleaning up diapers, but they can be used to clean up spills, or even to freshen up. We’ve all been there- sitting in the hot car/sun and you know you may smell a little, do a quick armpit wipe and you’ll feel and smell much better!

If your child is in diapers, and you find that you can’t be sure that there will be an accessible changing option while you are out consider carrying a small camping cot or a yoga may in your car. In a pinch these options can be pulled out to provide a clean and comfortable area to change a diaper on the go.

Here are a few other suggestions on items to keep in your car. A package of disposable underpads (these things come in handy for all types of needs), car chargers for any equipment you can’t be without (suction machine, feeding pump, iPad, etc), bottle(s) or water (for use with pills, to drink, for spills, etc), for families here in Texas keep some sort of cooling device (a battery powered fan, a cooling rag, etc). If you have a Go-Bag, be sure to keep it handy when you are out of the house as well.

What is Home Health?

Short answer –
Home Health is ANY medical service provided in one’s home. Home Health can be all types of things. Therapy services, nursing services, aids and attendants and hospice are some common forms of home health.

Therapy Services

Therapy services done in the home are pretty common, especially with children under 3 (still in some sort of early intervention program). Home therapy services can be physical, occupational, speech, vision, development and even play therapy.

Nursing Services

2010In home nursing services are typically what people think of when they hear the term “Home Health.” Nursing services done in the home vary from patient to patient.

There are different levels of nursing as well. Licensed Vocational Nurse (LVN) or Licensed Practical Nurse (LPN) is the first level. A LVN can provide most at home care. In most areas LVNs are not able to start an IV and they are not licensed to write the Plan of Care (POC). The next level of nursing is Registered Nurse (RN) or Bachelors Science Nursing (BSN). An RN can do all of the things an LVN can, with the addition of IVs and writing the POC. The next level is Nurse Practitioner (NP). An NP can do all that an RN can do. In addition, an NP can also write orders and prescriptions and see patients.

  • The most basic form of home nursing is home visits. Home visits are when a nurse comes to the patient’s home and basically just checks in. They take vitals, check that the patient has been getting their medications, and visits with the the family to see if there are any medical needs not being met, questions that need to be answered, or if there is anything that the family needs help doing. Some home visits will include help with some chores around the house. The nurse may help with cooking, cleaning, or even running some errands. Home visits may occur daily, weekly or even monthly. The schedule is determined based on the patient’s needs and doctor recommendations.
  • Another form of home nursing is Private Duty Nursing (PDN) or Skilled Nursing. Private Duty Nursing is a little more involved than home visits. Instead of the nurse checking in on the family, the nurse is scheduled for a shift at the patient’s home. PDN can be as few as 4 hours a week to 168 hours a week (24 hours a day- 7 days a week). The number of hours that are approved will depend on child’s medical needs, the doctors’ recommendations and the individual family’s ability to care for their child.
  • Respite is another use of home nursing. Respite can often be confused with PDN as often it is the same nurses filling the role. Respite is a little different however. PDN can be used when the primary caregiver is working, at school, sleeping, or tending to daily activities. Respite is supposed to be used to provide the primary caregiver with a break. Respite in many states can NOT be used if the primary caregiver is at work or school. Each respite provider and state will have their own guidelines. The best way to think of respite care is to ask yourself, will the primary caregiver get some respite (a break) during this time? If they chose to use their break to clean the house or go to the store, thats up to them, but are they getting a break?

Some nursing agencies offer all types of nursing, while others may only offer one. In addition, some agencies serve only infants and children (pediatrics), some only adults, and some cover the entire population. Each agency is different. It is recommended that before selecting an agency for your home health needs that you research the areas they cover and determine who will best be suited to fit your needs.

Aids & Attendants

On occasion a patient will need help, but may not medically qualify for nursing services. In this case, a family usually relies on aids and attendants. Unlike nursing that requires a license, aids and attendants do not require any type of certification. Aids are typically used to help with Assisted Daily Living (ADL) skills and tasks and administer some medications.

Hospice

Hospice can be found in some nursing agencies or in hospice agencies. Hospice combines Private Duty Nursing with pain management, family counsel, and palliative home care. Hospice used to only refer to patients at the end of life. However, with medical advances it is not uncommon for people to move in and out of hospice programs.

Questions to Ask When Choosing Home Nursing Care

  • Will the nurses assigned to my child’s care all have pediatric nursing experience? What is the skill level I can expect from assigned nurses?
  • Are the nursing hours scheduled according to the needs of my child and my family? How much input do I have regarding the scheduling of hours? Note: Most nursing shifts are based on the timing of the child’s skilled care needs.
  • Does the company guarantee shift coverage? Will I be able to have the nurses that I want? Note: Nursing is usually not a guarantee and there may be unfilled shifts. Therefore, it is important for families to train as many people as possible in your child’s care. Hospital nursing staff or the nursing agency can provide training for family members and friends.
  • How long will my insurance company / Medicaid pay for skilled nurses?
  • Who is available during and after business hours should I have questions or concerns?
  • What happens if I do not want a nurse to return to my home because of personality conflict or problems with the nursing care?
  • Will I be expected to train nurses in the care of my child or do the nurses familiar with the care do that?
  • Will the nurse be able to accompany my child to physician appointments?
  • Will my child be assigned a primary nurse, or do nurses rotate and if so how often?
  • How do nurses communicate with each other about my child’s health status and the nursing care goals?
  • How will my family’s privacy be maintained?

Questions provided by: Cincinnati Children’s Hospital Medical Center’s Special Needs Resource Directory: Home Healthcare.

Saline “Bullet” Multi-Use

If your child uses saline bullets you either have way too many, or never enough. If you have way too many, there are lots of “other” uses that you may or may not be aware of.

Saline bullets are traditionally used to clean out trach tubes, or to help moisten airways when used in nebulizers. We used them a lot in the nebulizer to help break up thick secretions and keep Casey’s lungs more clear.

Did you know that you can actually use them to clean and store your contacts? It’s much easier to travel with a few bullets instead of a full bottle of contact solution. Or if you run out of bullets, you can use general saline contact solution in a pinch. You can use saline bullets for eye drops and eye rinses as well. Many of the OTC eye drops are simply saline, but with the special packaging you pay a lot more.

Stash a few bullets in the car, in your purse, or in the first aid kit. You can use the saline to clean wounds. This is really handy if you are not near clean water. You can keep a few bullets in the fridge too. Cold saline on a bleeding cut will help to slow or stop the bleeding.
My husband uses a Neti Pot. If I forgot to pick up sterile water and/or he runs out of the saline packets he can use a handful of bullets and get the same results on his sinus.

We don’t have a dog, or cat, but here in Austin just about everyone else does. Many people use surplus saline bullets for their pet’s eye drops or wound wash.

Last, but certainly not least, if you still have more saline bullets than you know what do with, consider passing them on to other families. There are MANY online exchange groups where you will be connected with other special needs families that may have what you need, or need what you have. If you can find someone local so there is no shipping involved- even better. Just search for ‘Medical Supply Exchange’ on Facebook or Google and I am sure you can find one near you.

What is Cerebral Palsy (CP)?

Before we get started, a little about myself.  I am NOT a doctor, nor am I a trained medical professional in any way.  I am a mom.  My daughter, Casey, has very complex medical needs.  I joke with other moms of children with complex needs that not only should we all be able to pass the medical tests, but many of us are rewriting the medical books every day.  That being said, I want to help explain Cerebral Palsy (CP) in mom terms.

Take a second and think about the flu.  Every year the CDC is busy working to come up with a new vaccine for the current strand of flu.  There is not a single vaccine that can be reused each year simply because there are many different types of flu.  You can think of CP the same way.  There is not one treatment option as the term CP is very general and can apply to many different things.

According to CerebralPalsy.org CP is defined as:

While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

aidsMany people hear the term CP and immediately picture someone sitting in a wheelchair, or struggling to walk with braces and canes.  Sure, those images may be forms of CP, but there is much more to it.  Some people with CP can function without the need for these aids at all.  For some, CP, is not always even present, it may appear as twitching, tremors, or involuntary movements that come and go.

Generally when people are diagnosed with CP they are classified as hyper or hypo tonic.  Hypertonic refers to muscles that are very active, usually making them appear stiff or flexed.  It’s easy to remember this if you think of a term we have all heard many times, hyperactive.  We all know when we hear hyperactive it is usually referring to a child that is always going.  It’s the same thing, hyper (always going) tonic (referring to muscle tone).  Hypotonic refers to muscles that are generally flacid and inactive.  You can remember this by thinking of hypoallergenic.  I live in Austin, Texas (a mecca for allergies).  Many of us search high and low for hypoallergenic products.  Hypo means without or non-reacting.

Terms such as Rigidity, Spasticity and Dystonia are also commonly used to help classify CP.  Rigid, spastic and dystonia are all ways of saying that muscles are stiff (all forms of hypertonic CP).  These three terms are not as easily differentiated as hyper and hypo.  The main thing that differs with these terms is how the stiff muscles react to pressure.  Imagine bending a stiff knee.  When you apply the pressure the knee begins to bend.  In some cases you can get it to a point, then extend it back to the beginning point.  After extension it may be easier to bend on your next attempt, getting loser and easier with each pass.  However, when the motion is stopped the knee will return to its stiff locked position.  This example would be a spastic muscle.  Now picture the same knee.  However, it does not get easier with each pass.  Instead the pressure required to bend and extend the knee remain the same.  When the pressure is stopped the knee remains in the position last met.  This example would be a rigid muscle.  Now picture the knee one more time.  This time as you are trying to bend the knee the opposite leg may start to twitch or the child may arch their spine in response to the pressure on the knee.  This would be an example of dystonia.  Of course there is a LOT more to these different diagnosis.  If you want to know more about how these differ, there is a lot of content online or you can always ask your doctor.

While hypertonic and hypotonic as well as how these muscles react are all part of your CP diagnosis, the muscles affected also contribute to the diagnosis.  Many of us have likely heard the terms quadriplegic and paraplegic.  Quad is four and para is two.  Quadriplegic refers to all four limbs (arms and legs) being affected while paraplegic refers to two limbs (usually the legs, but it can be the right or left side of the body).  The term plegia means paralysis.  This can be a little misleading though.  Some kids are diagnosed with quadroplegia CP and they are not what most of us would think of as having paralysis.  Instead think of paralysis, when referring to CP, as not having full control of a limb or limited to no purposeful movement.  Some children have more manageable CP that affects a smaller muscle group, or is not consistent.  Each child’s CP diagnosis will be unique and may or may not include some of the common terms and classifications I am describing in this article.  Just like there are too many strands of flu to list them all out, there are too many ways that CP affects a child.

brainThe brain is a very mysterious and powerful organ.  Someone once told me that we know more about the brain than any other organ, yet we still can’t even begin to understand it.  We can create synthetic hearts, we can replace almost all other areas of our body.  When it comes to the brain however we still have so much to learn.  CP is a condition of the brain.  The doctors told us when my daughter was first diagnosed that the brain itself is in tact, but the wires are kinked, crossed, missing and flawed.  Her brain may be telling her body to bend her knee, but her body instead flexes every muscle from head to toe.  Conditions of the brain, such as CP, have been studied and are much more understood today than they were even a year ago.  Being that the brain is still very mysterious.  There is not a cure, there is not a prevention, and each CP diagnosis is unique.

There are a few standard treatments for CP.  There is a general treatment plan for hypertonic and another for hypotonic muscles.  Each of these treatment plans is a starting point.  For some people the standard treatments are enough.  However, for many they add to their treatment plan, and for some the standard treatment plans provide no relief or benefit at all.  There are a few off label (not using a drug as it was originally intended) treatments that have been successful with CP.

romRange of motion (ROM) is usually the first thing suggested for a child suspected to have CP.  There is active and passive exercises that can be done.  ROM is basically bending and extending the different joints throughout the body.  ROM can help to prevent stiff muscles from getting stiffer and can help to strengthen floppy muscles.  Any physical or occupational therapist can show you some exercises to do with your child if you are interested in doing some ROM.  ***ROM is used for many other reasons as well.  If your medical team suggest ROM it does not mean that a CP diagnosis in coming.

For many children a doctor (usually an orthopedic doctor) will suggest physical, occupational and/or speech therapy.  The therapist will work to relax and/or strengthen your child’s affected muscles.

In addition to exercise, there are many chemical interventions (medications) that are used.  The most common is Baclofen.  Baclofen is intended to stop or interrupt the signal from the brain to the muscle.  If the medication works as designed it can help to reduce tone dramatically.  Some people that see good results with this medication will have a pump surgically placed to administer the medication directly into their spine.  It is strongly recommended to try this drug orally (or through a feeding tube) or sublingually (under the tongue) before getting the pump.  There are many other drugs in the same class as Baclofen that can be tried if Baclofen does not work.  There are many seizure drugs and anti anxiety medications that are often tried off label to help with CP as well (clonazepam, dantrium, onfi).

Some patients try injected treatments for CP.  Botox injections are pretty common.  A doctor can inject the stiff muscle groups with Botox.  Botox is a controlled form of Botulism and it is designed to temporarily kill a muscles ability to contract.  For some patients that do not see results with Botox, Lidocaine is sometimes suggested.  Lidocaine is temporary just like Botox, but instead of stopping the ability to contract, Lidocaine numbs the area and puts the muscle to sleep so that the contraction signal is not received.

Surgery is sometime suggested as an option for CP.  Some surgeons can cut or lengthen muscles to help relax them and provide relief.  With all medications, injections, therapy treatments and surgeries there are potential risks and side effects.  It is up to each of us to weigh the pros and cons and determine what is best for our child.

There are some children that try all of the treatments (on and off label) and nothing helps.  It can be very defeating to try one after another and not see any benefit.  Each year new medications are being created and the medical community is learning more about the brain every day.  You may not have an effective treatment today, but there may be one just around the corner.

I have heard many parents say that their child is too young to be diagnosed with CP.  This is not entirely true.  Many doctors may wait on giving the official diagnosis, but it can be detected and diagnosed very early.  There are some insurance companies that require the CP diagnosis in order to get certain treatments covered.  A lot of infants/toddlers get these treatments through ECI programs and do not need the diagnosis for insurance reasons until they turn 3 and age out of ECI.  For some minor cases a child can overcome a lot of the CP issues seen early on with therapy and early intervention.  This may be another reason we don’t often see doctors giving a CP diagnosis early.  If you suspect that your child has CP, regardless of age, you can always ask their doctor for his/her opinion.

Getting any diagnosis is scary.  A CP diagnosis can feel like the end of the world.  There are a lot of options out there, no cure, but a lot of treatment options.  You may have to deal with it for the rest of your life.  You CAN live with CP.  Many people with CP live very full lives.  My daughter has a severe form of CP and she is in dance class, she swims, she does all kinds of fun stuff.

***Special thanks to Dr. Vanessa Ven Huizen for double checking my medical explanations.

This content was originally created for and published by Preemie Babies 101.

“Star Thrower” by Loren C. Eiseley

starfishOnce upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

How to Talk to a Special Needs Parent

casey1I am a mother of an amazing little six year old girl, Casey. Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring).

Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.

casey2First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.

Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?”

BAD:

  • Does she have a cold?
  • He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.
  • Oh gosh, he is really throwing a fit, he must have autism, right?

GOOD:

  • How old is she?
  • I have a little boy that like’s trains too (if the child is holding a train or something).
  • That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child.

NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

BAD:

  • What’s wrong with him/her?
  • Is he/she sick?
  • Should I call someone for you?
  • Do you have to do that here, can’t you step away?  That’s so gross.

GOOD:

  • I have never seen anything like that (referring to equipment- not the child), what is it?
  • It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

casey3When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away.

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

BAD:

  • Wow, how do you do all this?
  • I don’t think I could do this at all.

GOOD:

  • I’m impressed, you really juggle a lot.
  • Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective.

BAD:

  • Oh that’s nothing, so what if your child has ADHD at least they walk.
  • I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
  • How long will this last?  Or how long does he/she have?

GOOD:

  • It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.
  • Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc.

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder.

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

This content was originally created for and published by Papas of Preemies.