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First Step: Slow Down

Within the past few weeks, I’ve been approached by two different mothers, each of which has a child who was recently diagnosed with an Autism Spectrum Disorder.  Because I have an eight-year-old with Autism, they contacted me, each asking, “where do I start?”

They were calling looking for advice, and I answered their very reasonable, logical questions.  Where to get a second opinion, what services to ask for, where there are parent support groups to join, what sort of therapy is the best . . . the normal questions that any parent of a newly diagnosed child would have.

But under all of those questions, I hear what they really need to know.  It’s the same thing every time.  I hear the catch in their voices; the fear and grief.

I know what they are looking for; they want a roadmap.  They want to know what to do and who to call and where to start.  And they want to do it all RIGHT NOW.  They have learned the importance of early intervention, and their desire to get started right away is wise.

But I sense that some of the urgency is secretly due to a private desire to do the impossible—to turn back the clock.  They want to undo anything that got them to this point, because they can’t imagine the reality ahead of them.

I know where they are, because I truly have been there.  I remember the feeling in the pit of my stomach, the feeling that this can’t be happening; not to our child, not to us.  The feeling that we were not equipped for this—that this is for someone more patient, more knowledgeable, more prepared.  I had seen parents of ‘special needs’ kids, and they seemed to fit a mold.  They were people who had a patient presence; a hard-won gravitas.

They were not like me.  Impatient, impulsive, flaky; three kids under 38 months in a too-small house on a too-busy street.  There was no way we could handle this.

I remember that feeling well, and I remember the feeling that there was no way this would ever be ok.  And I see that in the eyes of these parents I speak with.  I know that’s where they are.

I hesitate to tell them that it will all be ok. Because I know they will never believe me.   They will think I’m lying; or, worse, that I’m a lunatic.  It will never be okay, and they know that in their gut.  They are certain that a switch has been flipped, and they will never feel like ‘just another family’ again.

So I tell them to take a deep breath.  Try to do one thing each day—just one thing.  Make a list, or call a doctor, or look up a support group.  And it will be hard to do just one thing, because they want to do everything.

But settle down.  Slow down.  Don’t.

Whatever the diagnosis, and whether your child is diagnosed at birth or at ten years old, it is so easy for a major diagnosis of any sort to consume you.  It is so easy for the whole family to shift focus and become The Family Dealing With The Diagnosis.  Fight that.  Fight it hard.

Because the more you fight it and the more you insist on keeping that feeling in check, the faster you will find some livable level of normal life.  And you, your newly diagnosed child, your spouse, your other kids—you all deserve that.

So slow down.  Take a yoga class.  Go out to dinner with your husband.  Take the kids out for ice cream.  Does the outing turn into a disaster?  Go home, go to bed, and try it again next week.

This isn’t a sprint; it’s a marathon.  And starting slowly, step by step, you will make it.  You will, your child will, and your whole family will.

And one day, you will look back and realize a year, or two years, or ten years have passed.  And you’re just another family.  And you’re okay.



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Student to Teacher

From Being A Student To Teaching Students

Every now and then I am in touch with individuals who I knew when they were students and are now young adults. One such person is Megan. Throughout her schooling, I have been amazed by Megan’s determination and positive attitude. Recently, Megan landed her first teaching job in a state away from her family and friends. I’m truly inspired by Megan and hope her story will inspire you as well.

Hi Megan. Thank you so much for agreeing to be interviewed. Please give some background on your diagnosis.

I was born with the birth defect Spina Bifida. It was discovered via ultrasound before I was born which gave my parents the chance to prepare themselves as best as they could. They were able to find other parents who had children with Spina Bifida and could ask them questions. My family is still friends with these people to this day.

I was born paralyzed from my waist down and am not able to stand or walk. Initially my parents used a stroller with me and I began using a wheelchair at the age of four. I used a parapodium to stand in to strengthen my legs and began wearing braces with a walker. I stopped using these after the fourth grade and just continued to use my wheelchair.

Do you have siblings?

Yes, I have one older sister. She is seven years older than me. As we get older the age difference makes less of a difference to us. However, we have often talked about how difficult it was for her to be seven years old and having a new baby sister that required a lot of attention due to medical needs. I can imagine that it would be difficult being an only child for seven years to then having to share your parents!

In school you had a 1:1 aide. What was that experience like?

I had a 1:1 aide in Kindergarten and first grade and then a different 1:1 aide from second grade until high school. She was there for physical reasons mostly, but she often provided emotional support as well. She became like a second mother to me in many ways and my friends got to know her as well. My friends and classmates were used to having her in the class and thought of her as just another adult in the room. She would often help the other students as well so that it did not draw so much attention to the fact that she was there for me. I feel that she was an important part of my learning to be independent because as I got older she allowed me to do more for myself. Once I started high school, I began to feel that I wanted to be on my own. My aide respected my space and was able to find other areas of the school to help in. It was nice having her at the school even though I was on my own because we could still check in with each other and I was able to gradually become more independent.

Your aide was pretty awesome! Did you experience any frustrations during your school years and how did you overcome them?

I have been blessed with family and friends who really never treated me differently because I have a disability. Most of the friends I have, I have had since elementary school. Therefore, my main frustrations were academically related. As a result of my disability, it is difficult for me to process information quickly. Therefore, school was never easy for me. I had to work hard to be able to understand what I was learning. This is especially true for math. People with Spina Bifida tend to struggle with math because it takes so much to grasp each new concept. However, I had great teachers who were patient with me and willing to work with me to help me understand better. My parents encouraged me to do the best I could do even if my grades did not put me at the top of my class.

In what ways did your parents encourage your independency over the years?

My parents are a major factor in my becoming independent. As I mentioned, they did not treat me differently because of my disability and have made me believe that I can accomplish anything I put my mind to. When I was a kid, I was expected to do chores at home that I was physically capable of doing. I was also encouraged to participate in activities that are typical for any school-aged child. I participated in sports such as tennis, softball and even dance class. Not only did my parents support me in these activities, but they were there making sure that I was able to participate and getting something from the experience. My mom was an assistant coach for my softball teams. She helped me receive accommodations in these activities. For example, I had a teammate run for me when it was my turn to bat for softball.

My parents also allowed me to have experiences that many people my age have not had even without a disability. They have allowed me to travel with them to many different places. Being from a small town, I feel that experiencing other places has encouraged me to reach toward higher goals. It has helped me to understand that there are so many opportunities available and that I want to experience as much as possible.

Your parents have done a great job raising you. What are some of your accomplishments?

I believe one of my biggest accomplishments is living my life the way I want to and not letting my disability get in the way. I was able to graduate from school and go on to college and earn my degree. That was a major experience that has allowed me to be independent. I lived in a dorm with roommates away from my family. I earned my degree in Elementary Education from the University of Pittsburgh at Bradford. Another big accomplishment has been getting my first teaching job and moving out of my parents’ house.

Yes! Congratulations on becoming a teacher! Have there been any adaptations to your work environment to accommodate you?

I am currently teaching fifth grade in Creedmoor, North Carolina. I have been waiting for about two years for my first full-time job so I was very excited for this opportunity! I was hired in the middle of September (2013) and had to move from Wellsville to North Carolina within a week. It was difficult to pack and move that quickly. It was especially difficult to find a wheelchair accessible apartment so quickly! However, I was able to find a place that works and even though it is small it works well for me!

I have not had to have many accommodations made at my school. I was given a choice of two classrooms; one which was on the second floor with the other fifth grade teachers or one on the first floor. I chose the one on the first floor for convenience and safety reasons. My principal and other staff members are very nice and accepting of me. Also, my students are very accepting of me and willing to help me out when I need it. It has been a great experience so far!

Speaking of students, what advice would you give to high school students with Spina Bifida?

You can accomplish anything you set your mind to regardless of your situation. It is important to set goals for yourself and stick to them as much as possible. I would also suggest surrounding yourself with people who are going to build you up and support you in your dreams.

Any advice for parents?

I would tell parents of children with a disability to treat them as you would any child without a disability. While it is necessary to provide them with any needed medical care, you should encourage them to strive for higher goals. Too many times I have seen parents that shelter their children and make excuses for them. If parents feel the need to make excuses for their children than that only allows the children to make excuses for themselves.

I really appreciate your time and your insight. Lastly, what keeps you motivated and positive?

Right now, my students keep me positive and motivated. They remind me of why I chose this career path and I cannot wait to continue the year with them. Also, my family and friends keep me motivated. They have all been so supportive throughout my life; especially when I made the decision to move away. I am happy to continue this next chapter of my life!

I look forward to see where life takes you! Thank you for your inspiration Megan!


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A Special Needs-Friendly Halloween

Does Halloween fill you with fear and anxiety—and not because of ghosts and goblins? For many people with a special needs family member, Halloween can be tricky.

From scratchy, uncomfortable costumes to loud spooky soundtracks, to overstimulation and allergy-unfriendly treats, to the difficulties associated with finding a costume for one with physical challenges, Halloween can be a scary, scary thing for many people in our community.

Here is a list of suggestions that you can link to or share with your friends and neighbors that can help make Halloween fun for all kids.

First, watch for major allergens on food labels. Or, have a basket of regular candy and a basket of allergy-friendly candy, and ask trick-or-treaters if they have allergies before handing out the candy. Chances are, the kids know what they can and can’t have—and if not, you can bet their parents are standing close by and can help guide their kids toward a safe choice.

Second, try to keep your entry area well-lit. Kids with physical challenges have enough obstacles without having to worry about tripping in the dark. Or, consider meeting kids at your driveway so that they don’t have to navigate the front walkway and steps with crutches or a wheelchair.

Next, understand that some young ones aren’t comfortable in a costume or mask and might just have a pumpkin sweatshirt on or another simple garment. In addition, they might not be able to say ‘trick or treat’—before scolding little ones about their manners or lack of costume, keep in mind that they might be doing the best they can to enjoy that day like their peers do.

For parties at school or in your home, put the emphasis on games or crafts and take it off of snacks and candy. Kids with extreme food sensitivities will appreciate the opportunity to celebrate with their friends. And all parents will likely appreciate a candy-free hour for their kids!

And, if you are a parent of a child with a disability, remember that you can help set the tone for your child’s enjoyment of the holiday. Volunteer to help run the school party and show the other parents that you can keep it fun while keeping it safe and enjoyable for kids of all abilities!

What about you? Do you have ways of helping your child, sibling, or friends celebrate Halloween?

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We have a little back-to-school tradition in our family.  After the fights over buying school shoes (because as much as my daughter would like to, you cannot wear flip flops year-round in Pennsylvania.  You just can’t.), after I’ve spent a small fortune on glue sticks and pencils and folders in every color of the rainbow.  After the first day of school and learning the bus driver’s name.  After all of those first day/first week of school things, we have another little tradition.

This is the day every year that I go speak to our son’s class.  Somewhere in the first few weeks of each school year, I go in to our special needs son’s ‘typical’ class and speak to his classmates.  This is pre-arranged for a time when he isn’t in the room.  I introduce myself to the kids and I read them a book; a story about a kid with a friend who has special needs.

After the story, I talk about my son.  Sometimes, our other kids come with me, and they talk to the kids about their brother.  They talk about playing with him, about what makes him happy and what makes him sad.  About ways he is like other kids and ways he is different.  If our other kids aren’t able to make it, I do this part myself.  It usually turns into a little question and answer session:

Classmate:  “Does he like watching tv?”

Me:  “Sometimes.  But he prefers watching movies.  Right now he’s really into Monsters University.”

Hands shoot up.

“I love that movie.”  “Me too!”  “So do I!”

Me:  “Wow, that’s great!  Then you have something in common!”

Another classmate:  “What does he like to eat?”

Me:  “Well, his favorite dinner is pizza.  He also likes spaghetti and meatballs, and tacos.  But his favorite thing of all is definitely, definitely ice cream”

The kids go nuts.  “I love ice cream!”  “So do I!”  “It’s my favorite too!”

It goes on like this for several minutes.  Eventually, the teacher and I lock eyes in agreement that it is time to wrap this thing up.

“Guys, I’m so glad I got to meet you guys today.  My son LOVES being in your class.  You seem like really nice kids and you guys all have a lot in common.  Thanks for talking to me today!”

Before I leave, I give the teacher a letter from my husband and I, one for each family in the class.  The teacher distributes the letters into each kid’s take-home folder.  In the letter, I have written a little bit about our family, and a small introduction of our son.  I give them the name of the book I read to the class, as well as the names of a few other books that might shed light for them on our son’s condition.  I offer our contact information and assure the parents that if they have any questions at all, we would be happy to answer them.

There are probably people out there who think this type of thing should be unnecessary.  Who knows?  They’re probably right.  But for me?  I can’t imagine sending my son to school without doing this.  Why?  Because the world is as accepting as we make it.  And kids are going to stay away from something or someone that they don’t quite understand.  That’s ok.  They’re kids.  But I’m a grownup.  And if I want kids to accept my son, the least I can do is introduce him to them.  So far, it has worked wonderfully.  The kindness and acceptance my son—and my entire family—have received from his peers and their parents has blown my mind.

So every year, I’m happy to do it.  The world is a scary enough place for anybody who is a little different.  If I can help those kids get to know my son, maybe it will make his life a little easier, and maybe it will help other kids, too.

So . . . tell me; what do you do?  I know there are countless ways you make the world a little more accepting for your son or daughter, brother or sister.  Please comment below and share with us the ways you educate or advocate for your loved one.

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Welcome to Kokua Network

What is Kokua?

Kokua is a native Hawaiian word meaning help, assistance, or cooperation.

What is Kokua Network?

In the true spirit of the Hawaiian word, the Kokua Network was founded with one intention only:  to help.

Springing from the experience of having navigated the difficult, sometimes treacherous territory of a family member caring for one with a disability, the Kokua Network exists as a forum to help with advice, guidance, and practical solutions.

Whether you are:

  • The parent of a newborn or newly diagnosed small child and are taking your first tentative steps toward looking for advice; or
  • Transitioning your special needs preschooler into elementary school and overwhelmed by the terminology, testing, and meetings; or
  • Looking toward your disabled child’s adulthood and seeking guidance about what the options are; or
  • Trying to make financial decisions in a way that will provide for your sibling or child in all ages of his or her life;

Kokua Network is there to help.

Go to the Planning Guides, and find topics on every phase of your child or sibling’s life.

Check out our Boot Camps, which explain everything from Special Needs Trusts to the difference between an IEP and a 504 Plan.

Search our Directory for a summer camp program or service that fits your needs.

We invite you to check out our website.  It’s free, it has something for everyone, and more is being added every day.

Join our community.  Follow our blog.  And continue the conversation.

Kokua Network.  Helping the Special Needs Community Connect.

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