Tips for Parents of Children with Special Needs

We've been through the wringer with our daughter Ruth, from abnormal prenatal test results, to respirators, NICU's, PICU's, biopsies, feeding tubes, 911 calls, CPR, you name it.

We have learned a lot and we shudder to think that others have to re-learn what we already know. Here are some of the things we have learned, from basics about life with a special needs child to detailed instructions about tube feeding and Emergency Services protocols. Feel free to contribute your own tip!

These tips are split into several groups:

When You Learn Your Child Has Special Needs
Insurance
Therapy PT/OT/ST
Feeding Tips

When You Learn Your Child Has Special Needs
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Having a child with special needs is often a surprise. Despite the shock and dismay, there is a very real need to take stock of the situation and make a game plan. This serves two purposes, it helps you to grasp the reality of your child's condition and it makes you deal with the nuts and bolts of your new and different life.

Welcome to Holland
Inventory your personal strengths.
Do it now.
Identify other sources of support.
Set a plan with your partner.
Know your child.
Learn to delegate.
It never hurts to ask.

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There is an excellent essay by a woman named Emily Perl Kingsley which describes what it is like to learn you have a child with special needs perfectly, and adds a little perspective:

Welcome to Holland

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......"

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland!?!!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. "

copyright. 1987 by Emily Perl Kingsley. All rights reserved.
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Inventory your personal strengths.

When you learn your child has a disability, it is a lot like being tossed into ice water. Your mind and body are numbed but you have very little time to respond before events spiral out of your control.

As soon as possible, you must take a clear-eyed look at what you can bring to the table personally to help your child -- and to help yourself -- in the coming days, months and years.

If you are good with people: engage professionals, family and neighbors in your efforts. Get them to assist the search for answers, support or advice.

If you are more reserved: do research and have your facts together so you can advocate for your child.

If you are not a doer, be a watcher. Learn how to care for your child quickly and efficiently by watching professionals. If you cannot participate in your child's care, understand what your child's health care team is doing [and why].

Be honest with yourself and others about what you can and cannot do. It is not easy to admit when you're not up to the task. But it's worse to hope things will take care of themselves, then drown in overwork or worry - or worse, critical errors. Your child cannot live on hope, the sooner you know what you can and cannot do, the sooner you can act fill the gaps.

Some say we are given our children because we are strong, but we're not superhuman. We need to recognize our strengths and weaknesses early on if we are going to help our children fight to live and grow.

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Do it now.

They say timing is everything, right? Gut responses and feeling "funny" about a situation are examples of red flags for immediate action. If you think something is wrong with your child or the care your child is getting, speak up. If not directly to medical staff, then to your partner. If you're wrong, so be it, you're learning. An error on the side of safety is better than a lifetime of regret.

Do not let fear freeze you. Time spent worrying is time lost making personal contact, doing research, and getting hugs. If you are scared, tell someone immediately. If they can't help you, they can find someone who can. We forget that most people can tell just by looking at us that we are in a tough spot, and we are. No point trying to cope with it alone, is there?

Make lists when there is a lot going on; by writing it down you give yourself the ability to follow up later when you get time. Lists can also organize and prioritize a sleep-deprived mind. Lists help you delegate the small stuff to others (see below).

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Identify other sources of support.

You may find a sympathetic nurse, a close family member, a co-worker, or even somebody in your club or church that takes an interest in your child's case. These folks are sources of support and guidance. We're not talking about dumping your all problems on them here, you may simply need a sounding board. Some people are grateful to help, even it if seems like a lot to you. It makes them feel good to ease the load for somebody they care about. Who knows, maybe they are scared too -- people who panic when they hear talk of special needs, feel totally at home talking about lending a hand with yardwork. They get to help by doing something they are comfortable with.

There are likely to be parents with kids like yours within an hour of where you live. Locate them. If they have already been through the tough part, they can extend help and advice to you. They'll feel good about it because they can share their experiences with someone who can truly appreciate it.

Ask your child's doctors and their staff for referrals to other parents. Use the Internet to find support groups, call your hospital's support line - if necessary contact the National Institutes of Health for information about research and development of treatments.

Plus, you never know who's going to come through for you. Your pediatrician might be an expert at managing health insurance companies. Your boss may know somebody with a kid like yours. Your family can offer financial support if it comes down to that.

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Make a Master Plan with your partner.

Divide and conquer is a double edged sword. If you and your partner do not identify the major issues, concerns and potential risks the two of you face early on, your child's disability will destroy your relationship. Simple things can prevent miscommunication, pet peeves and dropping the ball (for example, like assigning tasks to avoid blaming each other for forgetting). Fights about stupid stuff heat up fast because of "emotional leakage". Worry about the child sneaks into everyday issues, often without us our being aware of it.

This is serious business and it needs to be handled openly and with respect for each other. The divorce rate among parents of children with disabilities is significantly higher than the national average which is over 50% already by the way...

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Know your child.

You are ultimately the one who spends the most time with your child. You know how to coach your child to do something difficult, you know when your child is going to crash, you know how to comfort your child. You know virtually every procedure performed and test result returned because you were there the whole time.

You can fill gaps in knowledge among your child's care givers. You are the one who experiments with your child, sees subtle signs of improvement or danger.

Because you know your child best, be prepared to transfer that knowledge immediately, without emotion, when requested.

Put a package together in one location:

Use this package for emergencies and visits to new health plans, specialists, etc. Update the package around birthdays, holidays, phases of the moon, when you change the battery in the smoke detector, you get the idea.

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Learn to delegate.

Let's face it: sometimes your life is going to be put on hold. You are not going to make it to work some days, you're not going to get the lawn cut every week, you'll skip meals, lose sleep, etc. All this piles up in your mind even though first and foremost you know caring for your child comes first.

Don't stress about the small stuff. It eats away at your ability to focus on your child.

Remember those other sources of support you identified? Those people can help you take care of the small stuff. Nurses will spend 10 minutes with your child so you can take a hot shower. Your nephew can do the lawn occasionally. Your co-worker can follow up on a few phone calls for you too. There, that's about 2-3 hours freed up already -- why not take a nap after that shower, why don't ya?

Most people won't delegate because they think something will get dropped. The key to delegation is follow up. Communicate clearly what you want done, and advise that you will review the work afterward. When a person knows what task they are responsible for and they know there will be checks and balances, they will perform to expectation. Set it up right, then let it go.

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It never hurts to ask.

What's the worst that can happen?

Jeez, you already have a child with a disability, what are you worried about?

Uh, hello!?!! So far none of that is worse than what you're going through right now.

Let's be clear, cranky customer service people, insurance claim departments and waiters in your local restaurant are living free and easy compared to you. Don't feel bad about abusing them for favors: Make them move the table for a wheelchair, make them call you back with an answer, get their boss on the line. S'fun!

Insurance
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Health insurance is going to be a big issue for you and your child from now on. You are going to make a lot of phone calls, get a lot of mail, see a lot of paperwork and learn more than you want to about the health care system in your country.

Here are some key things to know:

It's not a bill.
It's not a check for me.
It's not covered?
It should be bought outright.
Getting past the front line.

It's not a bill.

You will see a lot of summaries of items paid by your insurance company in the mail. Check these summaries for everybody's favorite words, "THIS IS NOT A BILL". If you see this, verify that no additional dollars are due out of pocket, then file the summary and move on.

It's not a check for me.

You may receive an actual check from your insurance company at times. Resist the temptation to cash it. Often, a check made out to you represents the amount your insurance company thinks you should pay to a third party for goods or services.

If you cash the check, you may have to cut a check to a third party later, messing up your finances. Also, your income will look higher than it really is at tax time because you cashed the check.
Always verify money is owed to a third party before you cash any checks from your insurance company. If possible, redirect the checks to the third party or have the insurance company stop the check made out to you and cut a new one to the third party.

It's not covered?

Don't be surprised if your insurance company declines payment on a variety of items/procedures. They are often going by general guidelines that do not apply to your child's condition. Further, insurance companies often decline payment because they can. Just because your insurance company declines payment does not mean you cannot have a claim manager or medical staff member review the item and authorize payment. Go for it (see below).

It should be bought outright.

Insurance companies often decline payment for "durable medical equipment" (ex. suction pumps, intravenous pumps, oxygen, etc.), don't bother trying for a special exception. Instead, attempt to get authorization to purchase of the item, it will save everybody time and money. Consider this: if your child is tube fed he/she will need an intravenous pump, IV pole and bags for feeding. Monthly rent an IV pump is really expensive -- the rent on an IV pole costs more than Cable TV in some areas. Many families go for years renting equipment that should have been bought outright. Purchasing equipment is often more cost effective, especially is the child's condition is chronic.

Getting past the front line.

Never stop at the first response from your insurance company. Customer service staff, claims personnel are going by guidelines. There is always an exception to the rule. You can be that exception if you try.

Get a case manager assigned to your child and have their direct phone number handy. This will save you time and aggravation and make referrals to specialists easier and faster too.

Try this: assume that every open issue you have with your insurance company will take a couple of phone calls and possibly a letter or two. Approaching each insurance issue with a long view will make your dealings with individuals on the other end much less stressful and possibly amicable in a "I know what you're doing" kind of way. Your insurance company may be stiff and inflexible by nature, but not everybody who works there is.

Try this: deal with your insurance company as if it is a friendly rivalry in which you and the insurance company are engaged in an attempt to reach a common goal. They may take you up on it. Reward them when they do. A box of candy costs less than $500 for the second ambulance that responds to a single 911 call.


Therapy -- OT/PT/ST
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Every child's physical condition is different, these are general things we've learned from our experience with Physical Therapy, Occupational Therapy and Speech Therapy.

Physical Therapy

Start physical therapy as soon as possible. Our first neurologist said, "Babies have a small bag of tricks, we'll have to see what your child can do." It turns out that our child can do a lot of things she wasn't supposed to be able to do. She has a nasty neuromuscular disease that has left her with very weak upper body and a significant head lag, but she can walk unassisted most of the time -- pretty rare for a kid like her. Find out what your child can do!

At home, you will be a physical therapist. You will coach your child and test your child more than anyone else. Ask your child's physical therapist for a "to-do" list. Find out what they have planned and, if possible, work on it with your child between sessions. Don't let your child's therapist turn your child off something important. Our child's first physical therapist was bossy at times and impatient at others, she was constantly butting heads with our daughter. To this day, we think Ruth didn't crawl because she was being headstrong with her therapist.

Occupational Therapy

Don't settle for a lousy occupational therapist, this person may teach your child to care for him or herself. We love our child's 1st occupational therapist. She was kind, innovative and took a genuine interest in our daughter's future. She knew Ruth since she was 3 months old has spent a lot of time thinking of ways to get around our child's oral defensiveness. All of Ruth's feeding breakthroughs came from her occupational therapist: drinking fluids, eating solid food, holding a spoon, chewing, you name it. When our child's eating ability leveled off, we were very frustrated and worried; our OT set up a meeting with a noted oral-motor specialist who confirmed we were on the right track with Ruth. The specialist also gave us more information leading to another feeding breakthrough.

Speech Therapy.

The best tip we learned about speech therapy came when we previewed our child's preschool at an open house. The speech therapist got up and said, "Don't worry if you child is 3 and has a bit of a lisp, or has trouble pronouncing some sounds. Most kids do. My job is to help your child if your child has trouble communicating or expressing themselves through speech." A collective sigh of relief echoed through the room. Most parents worry that their child's early speech patterns are permanent because so many other aspects of the child's health or development are permanent. We were gratified to hear some good news for a change.

Feeding Tips
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Oral defensiveness is a big problem with special needs kids, especially kids with hypotonia, or low muscle tone. Many kids develop an aversion to feeding orally at a very early age after aspirating formula, gagging on Nasal-Gastric (NG) tubes or being force fed to maintain caloric intake. We learned the hard way that going for too long without finding alternative methods to oral feeding can make later attempts much harder.

When our child was unable to bottle feed, an NG tube was placed to enable us to tube feed the remaining formula into her. However, this went on for just over 3 months without improvement, making her uncomfortable and very upset at feeding times. Imagine a thread going down your nose, down the back of your throat that saws back and forth a little bit each time you swallow. This is what an NG tube feels like after a while. A child will literally stop swallowing to avoid the sensation.

We opted for a Gastrointestinal Tube (G tube) when it became painfully clear to us that our child was learning not to swallow. It took almost a year to get her to take liquids by mouth again. During the intervening period, she had a lot of difficulty managing her saliva and had several respiratory arrests due to her inability to manage runny noses or vomit. All this because we let her struggle with oral feeding too long.

L19 Hot Spicy!

Did you know that children with hypotonia require a lot of oral stimulation to get them interested in eating? I like Chinese food. L19 Hot Spicy is my usual order at the local Chinese place (Chicken and Broccoli in Hot Garlic Sauce). We let our child try a bite of my spicy Chinese food once and she loved it. She spit out, but smiled. She loved it. After that, it became a routine to let her taste spicy things. Like the melted cheese and salsa from my ever-present Chicken Enchilada dinners. Again, she often spit out the cheese and salsa, but it really got her taste buds going. Eventually, we turned Ruth on to cheese this way. Cheese is great for her because there are a lot of calories and fat in a small amount of cheese -- a big bang for the buck.

We learned to think outside the normal food groups when trying to feed our daughter, others have too. One woman we met at a Support Group told us she watched her child with a G-tube eat an entire stick of butter once, like it was a chocolate bar. While it was happening she was not horrified, but fascinated. The rest of her family were mortified and had to leave the kitchen, but this woman thought, "Wow, there must be a million calories in that stick of butter!" She learned to let her child eat whatever she wants. She plans to teach about eating right when the child is stronger and healthier. Perhaps you will find similar success.

Some kids with G tubes have a poor suck and swallow reflex. Most babies are born with a strong suck and swallow (it is an innate behavior to guarantee survival) but kids with special needs often don't have the strength or ability to perform a surprisingly complex task. There are many steps

  1. closing the airway
  2. closing the lips around an object
  3. flexing the tongue down and back
  4. sucking in liquid
  5. flexing the tongue forwand and up
  6. relaxing the throat to let the liquid pass
  7. opening the airway.

We learned that straws are a quick way to get liquids past a confused tongue and down the throat. Our Occupational Therapist taught us this trick:

Surprise! Down the hatch!

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