Just when our special kids are finally getting used to following their school year routines, along comes summer to throw a monkey wrench into their plans!

Many families dread the idea of the long summer holiday.

It’s not because they don’t love and enjoy being with their kids!

It’s simply because they don’t know what to do to keep their kids happily occupied all day, every day, for days on end!

If  you are the parent of a child with special needs who is dreading the upcoming summer vacation, I’d like to make the following suggestions that may put your mind at ease and reduce your anxiety just a little!

> If you think your special needs child would be better off without such a long break from their school routine, check to see if your school district offers extended school year services for kids with disabilities.

> Many areas have day camps or even overnight camps designed especially for children with special needs, so check with your local and national disability organizations to see what programs might be available where you live!

> Check with your local playgrounds and parks to see if they offer summer programs your child may be able to attend.

> Establish a regular summer time routine similar to your child’s school year routine and stick to it!

For those at a loss of things to do with your child this coming summer, I’d like to offer the  following ideas for fun activities you might like to include in your summer time routine!

– Make Garden stones. There are all kinds of simple and easy kits available online and at most craft stores.

– Set up a nature scavenger hunt.  Have your child look for items such as: pine cones, feathers, sticks, flowers, and rocks. There are so many things your child can look for outside.

– Set up an obstacle course indoors or out!

– If you’re worried your child might lose the academic skills he worked so hard to achieve during the school year, purchase some educational materials and “play” school with your child for an hour every day!

– Purchase several paint brushes of different sizes then fill a bucket with water and let your child “paint” the house!

– Draw with sidewalk chalk.

– Take your child on a nature hike.

– Start a leaf collection.

– Purchase a flower press and start a flower collection.

– Dig for fossils in the back yard!

– Build a dollhouse.

– Take regular trips to the library.

– Join the library reading program.

– Make a nature collage.

– Grow a mini garden or container garden.

– Set up an outdoor sloppy sensory station. Include containers of shaving cream, pudding, cooked spaghetti, rice, beans, finger paints, mud, sand, and jello!

– Check with your local parks for free outdoor concerts.

– Take regular trips to the park or playground

– Set up the sprinkler then run through it to cool off!

– Set up regular play dates with friends.

– Set up your own backyard Olympics activities!

– Look for and identify bugs

– Go bird watching

– Visit your local pool.

– Plan a few days at the beach.

I hope this list gets you off to a good start and sparks your own imagination in keeping your child happily engaged, occupied, and learning this summer!

Home computers were relatively new in 2000.

There was no Facebook, Skype, or any other communication systems available back then that would have made teaching my children back at home much easier, while Bethany and I lived in the hospital for two months, but we did make use of email and of course the phone.

We are living proof that a family can continue to homeschool long distance during a medical crisis.

After Bethany was released from the hospital she had to learn how to sit up, walk, talk and use her arms and hands all over again.

Thankfully, she was eligible for in-home physical, occupational, and speech therapy.

When it became obvious that Bethany would benefit from learning sign language, she had lessons at home for that too.

In fact, our whole family did!

Luckily for me, Bethany’s sign language teacher was a special education preschool teacher as well!

She supported our homeschool endeavors and was more than willing to give me some hints and tips on how to teach Bethany preschool academic skills!

However, when Bethany was about six years old I began to feel inadequate as her teacher.

I had been able to successfully teach her many skills and concepts, including teaching her all the letter sounds.

But try as hard as I might, I was not able to teach her how to blend the sounds together into actual words.

I felt like I was failing her as a teacher and began to entertain the idea that perhaps being taught by a trained and educated special education teacher would be better for Bethany.

I was wrong.

Although Bethany loved her first year attending a special education class at our local public school, by February of her second year, she began having many more seizures than usual.

She nearly stopped eating altogether and lost so much weight that she became overdosed on her medications.

She was so ill that we had to take her out of school until she fully recovered, which didn’t happen until the next school year.

We tried school again.

This time Bethany was in a different classroom.

She had to walk through a long, noisy and chaotic corridor and climb a set of stairs to get to her new classroom.

It was right around this time in her life that Bethany began to get violent and have behavior problems.

By February of her second school year, we found ourselves facing the same health issues Bethany began having lots of seizures again.

She became anorexic and overdosed on her medication again.

We now believe that the stress of attending such a big, noisy, and chaotic school was too much for her.

We withdrew her from school again.

This time we kept her home for about three years.

I once again began to feel inadequate as her teacher so we decided to look for a more suitable educational placement for Bethany.

We discovered a small, cozy, private special education school which seemed like the ideal and perfect placement for Bethany.

We decided to give it a shot.

Bethany made it through a year and a half at the private school before she began having so many seizures that it became nearly impossible and definitely dangerous to continue sending her to there.

At this point, I resigned myself to the fact that my sweet, precious daughter needed to be at home full-time and all attempts of trying to send Bethany to school ceased forever!

We did try a short time of having in-home instruction with a teacher from the public school, but Bethany’s seizure disorder was so chaotic that it too, soon became pointless.

You can’t schedule seizures to occur only after school hours!

I finally learned that I would have to be Bethany’s teacher and that we’d have to schedule her learning experiences around her seizures disorder.

So we took advantage of her good days and let her rest on her bad days and that’s what we are still doing to this day!

Advantages of Homeschooling a Special Needs Student:

• The parent knows and understands their child’s needs better than anyone else.

• The parent can create a truly individualized educational program for their special child.

• Homeschooling provides the child with 1:1 instruction.

• Homeschooling eliminates many stressors from special needs students’ lives.

• Homeschooling offers the flexibility to schedule lessons for when your child is feeling best able to learn.

• Homeschooling offers the flexibility to teach for as long or as short of a time as your child is able to attend.

• Homeschooling offers the flexibility to schedule school time around medical appointments.

• Homeschooling offers a safer environment, especially if your child depends on special medical equipment.

• Homeschooling offers a safer environment for medically fragile children who may be more susceptible to getting dangerously ill from common childhood germs and bacteria.

While I certainly have nothing against sending any child, those with special needs included, to public or private schools, I have learned that homeschooling my special needs daughter has been the better choice for her and it may be a good one for your child too.

There are absolutely no blessing in my daughter, Bethany, having had a brain tumor nor are there any blessings in the disabilities she has acquired from complications during the surgery required to remove it.

Granted, I do believe it’s true that having a child with a life threatening illness has taught my family the things that are most important in life.

I’ll be the first to admit that some good things have happened to us that never would have happened if Bethany had not gotten sick.

Because of Bethany’s illness people who would probably otherwise never have chosen to bless us have become huge blessings in our lives!

Yet even so, to say that my precious daughter’s suffering through months of excruciatingly painful cancer treatments, living with daily debilitating seizures, and enduring the emotional torture of having a difficult to control behavior disorder would be an incredibly unloving and cruel insult to her.

I wouldn’t cure my child even if it were possible

Sadly, I’ve heard many parents say this.

They believe that taking away their child’s disability would be taking away their identity or the essence of who their child really is. If your child is truly happy and not suffering physically or emotionally in any way from their disability, then I certainly have no problem with that!

But my daughter has suffered the unspeakable tortures of brain tumor treatments. She still suffers with physical pain and suffering from having seizures every single day.

She suffers the emotional turmoil of sometimes not being able to keep herself from hurting the very ones she loves the most and she battles with the side effects of several seizure medications bombarding her brain every single day.

If a doctor told me today that they could cure brain tumors and cure Bethany of her seizure and behavior disorder right now, you better darn well believe I’d take them up on their offer in a New York minute.

What kind of a parent would I be if I could relieve my daughter of her pain and suffering but chose not to?

God has never given me more than I can handle.

I am reasonably certain that I’ve been given way more than I can handle many times over already.

I can assure you that standing by while helplessly watching my daughter suffer for fifteen years has been more than I can handle.

Seeing my daughter lying on the couch in a seizure stupor, unable to participate in normal, everyday activities that most people take for granted nearly every single day of her life for years on end has been more than I can handle.

Seeing my daughter disappointed yet one more time because seizures have prevented her from participating in an activity that she has been looking forward to has been more than I can handle.

Worrying about what will happen to my precious, beloved daughter when I am no longer here to care for her is more than I can handle.  I know that I have been given more than I can handle during the many times I have felt utterly alone, helpless, and hopeless and all I wanted to do was crumble to the floor in a crying heap.

My daughter’s disabilities are God’s Will.

God may well have allowed my daughter to get a brain tumor and become disabled for reasons He only knows, but I can’t and will never believe that it is His will that she or anyone else becomes seriously sick, disabled, or suffers in any way.

I may never understand why Bethany has been asked to suffer in such a dreadful manner or why God did not prevent it from happening, but I absolutely must believe that someday I will understand why, that it will all make perfect sense to me, and that it will have been for some grand and noble purpose.

I give up. 

Though it may seem at times that there is no hope of Bethany ever having a life free of seizures and debilitating disabilities,

I will never give up hope or searching for that one elusive medication, treatment, or therapy that just might set her free her from all her pain and suffering.

Your child is referred to specialist after specialist who perform every diagnostic test known to mankind.

You have high hopes that at least one of those specialists will finally give you some answers only to have your hopes dashed to pieces when they too come up with no definite diagnosis.

Your child has now joined the ranks of those who have an undiagnosed disorder, disability, or illness.

Many people living with medically unexplained disorders spend a majority of their time searching for answers and help.

Unlike the diagnosed, who have access to the proper medical protocol and therapies specific to their disabilities or diseases, the undiagnosed have no tried and true treatments to offer them hope of ever improving their conditions.

Parents with undiagnosed children face tremendous worries and burdens.

Their loved one may be suffering but unable to access proper healthcare because even if there does happen to be a treatment or therapy that might be of some help, without a specific diagnosis many insurance companies will not pay for such treatments or therapies.

Parents are forced to watch their child’s condition deteriorate and worry that they may not get a diagnosis and treatment in time.

Another issue that some families with an undiagnosed loved one face is that many times the ill or disabled individual is accused of faking their symptoms and out of frustration diagnosed with a mental illness, thus dashing all hopes of ever being properly diagnosed or receiving the proper treatment.

The undiagnosed are at another disadvantage also.

Unlike well-known disabilities or diseases with several foundations or charitable organizations raising awareness and funds and looking out for their welfare, the undiagnosed have only a precious few looking out for their wellbeing.

The time has come for the world to be made more aware of the devastating plight of individuals living with undiagnosed diseases, disorders, and disabilities.

Undiagnosed: Medical Refugees is a documentary telling the story of millions of people whose lives have been devastated by unknown and undiagnosed illnesses.

Swan USA: Syndromes Without a Name Swan UK: Syndromes Without a Name are organizations devoted to supporting and providing information and advice to families of children living with a syndrome without a name.

In Need Of a Diagnosis Inc. advocates for increased accuracy and timeliness of diagnoses and is a resource center for those who suffer with illnesses that have eluded diagnosis.

Please visit Undiagnosed for a list of organizations and foundations dedicated to assisting and supporting the undiagnosed.

During and after the surgery to remove it she suffered numerous complications which caused her to have multiple life long disabilities.

Memories of Bethany’s lengthy battle with a brain tumor and her constant suffering with uncontrolled seizures have made it difficult for my husband and I to discipline her.

We want her life to be as happy as possible.

When children are first diagnosed with a disability or illness, parents aren’t thinking ahead to an obscure time in the future when they may actually have the privilege of needing to discipline their beloved child one day!  But that day is more than likely going to occur!

Bethany’s illness has sentenced her to forever be a two year old with autism, a language processing delay, and a severe, uncontrollable seizure disorder.

It has also caused her to have problems with aggressive and at times violent behavior.

In other words, even though Bethany is a 140 pound, sixteen year old young woman, she functions in real life as a toddler.

She comes complete with giant sized temper tantrums, has great difficulty understanding lengthy and complicated strings of spoken language, and has an extremely limited vocabulary.

So unfortunately, she does engage in a few undesirable behaviors every now and then.

Below are some guidelines that we try to remember when Bethany is acting in a less than desirable manner.

● Is Bethany capable of understanding what we are asking of her? We must be sure to explain what we are asking to her in short, simple, and precise language.

● Is her behavior a common characteristic of or an innocent behavior related to her disability?

I suggest that parents educate themselves extensively on their child’s own unique condition.

Expecting our children to do the impossible is extremely cruel.

● Could this behavior be a side effect of her medications?   I suggest parents familiarize themselves with all side effects, both common and rare of each medication their child takes.  Asking our children to fight the negative side effects of a medication is also impossible, in my opinion.

● Is Bethany’s misbehavior an attempt to communicate something important to us that she is not able to communicate in a more appropriate manner?  Is Bethany hungry, thirsty, tired, or not feeling well and unable to let us know?

I am reminded of an incident when Bethany refused to participate in an outing.

She kept pointing to her neck and telling us she was waiting for it to go away.

We thought she was just being obstinate, but the next day her neck was horribly swollen. It turned out that she had an infected lymph node but was incapable of telling us in a way that we understood!!

● Are we expecting Bethany to be acting as her chronological age and not her functioning age?

Because of Bethany’s brain injury, she functions as a two year old.  It would unfair to expect her to behave like a typical teenager in a similar situation.

● Is she acting this way because she needs attention?

Some children crave attention so much that they will behave in a way to attract even negative attention.

If after exhausting all other options, we determine that Bethany’s behavior is actual misbehavior we try to implement some form of positive discipline to change the undesirable behavior.

Below are some suggestions for putting together a positive discipline plan for your child.

● Set a standard of behavior for your child and be consistent.

Explain the standard of behavior to your child in a form that he or she will understand, be it simple written instructions, spoken words, or in pictures.

● Teach your child in simple, incremental steps how to meet your standard.

● Model the desired behavior for your child.

● Give your child some control by offering choices.  Examples: “You must go outside to play, but you can choose the activity you do.”

“You must get dressed, but you can choose your outfit.”

● Catch your child being good and praise them for it.

Make a BIG deal about good behavior and ignore undesirable behaviors if possible.

● Design a system for rewarding desirable behaviors.

Use sticker charts, coupons, tokens, rewards etc. to motivate good behavior.

While I certainly don’t claim that these suggestions have been the magic bullet in putting an end to all of Bethany’s undesirable behaviors, they have been very helpful to us and I believe they offer a good place to begin.

Disclaimer: I am not a behavior therapist, psychologist, or psychiatrist and am not claiming that implementing these suggestions will “cure” your child of all undesirable behaviors.

Parents of special needs children will probably need to work a little harder in helping their kids cultivate and keep friendships going than parents of typically developing children do.

Our kids may actually need to be taught how to be a good friend!

Below are some strategies parents of special needs children may want to consider in their quest for helping their children find and keep friends.

• First I recommend role playing with your child about how to treat their friends.

Reading social stories could be also included in these lessons.

• Be sure to insist that social skills training be included in your child’s IEP, and then make sure that it actually gets done!

• Invite kids from your child’s class at school or place of worship over for supervised play dates/lessons.

• Get your special little someone involved in community sponsored special needs social activities such as Special Olympics, clubs, special needs dances, dance classes, art classes, or special needs sports activities.

• If possible do not entirely rule out including your child in the same classes, clubs, and activities that their typically developing peers are attending as well!

• If you feel that your child might need a little more help making and keeping friends try enrolling him or her in a special needs social skills club where he or she could get in some practice ‘being social” with his or her peers in safe and supervised environment.

Your child is sure to gain some valuable social skills while also having fun and making friends!

• If you feel that your child needs a more professional and structured approach to learning social skills you might even want to consider consulting with a licensed and trained behavioral therapist who specializes in such matters.

One on one social skills therapy sessions with an experienced and successful therapist could prove to be very beneficial in your child’s quest to make and maintain friendships!

My daughter Bethany has been attending Flash Club, a social club for children who have autism at our local YMCA for quite a while now.

She greatly looks forward to playing basket ball, swimming, and dancing with her friends every week.

In fact, club is her favorite part of the week! She even has a “boy friend” at club! We are hoping to one day take her club relationships one step further by setting up get-together’s with some of the other children outside of club!

Bethany has gained a bonus skill from attending Flash Club.

As a result of the activity changing every eight weeks, she has gradually learned to process, accept and adapt to changes in her routines and plans.

She has generalized this very important skill into other areas of her life as well! How ever you choose to handle it, helping your child make and maintain friendships is one of the best things you could ever do for your child!