The following is a guest blog post by Kokua Network contributor Heather Johnson.
In an ideal world, a child’s case manager and therapists would remain the same from the very first diagnosis until retirement. It’s frustrating to have to get a person reassessed and explain that person’s story, needs and progress to a new person at every new phase of life. Unfortunately, funding streams change as your child ages. Knowing where to begin is sometimes the hardest challenge. This blog is in no way a comprehensive guide to all of the service options available to you, but rather serves as a jumping off point; a place to begin.
Birth-3 Early Intervention
When you start to suspect your child might need some additional supports, the first thing to do is get him or her assessed. Your family doctor is a good place to start, however, you can also go through your county Mental Health/ Mental Retardation (MHMR) department. This assessment will determine what services your child needs, such as occupational therapy, physical therapy, speech/language support, hearing and vision support, and behavior services. Identifying your child’s need early and beginning services at this age is crucial; many symptoms and characteristics of many disability diagnoses can be alleviated or reduced if they are treated early.
Age 3-5 Preschool
After your child has aged out of early intervention but before he or she has started kindergarten, services are accessed through your county’s intermediate unit if the child has a diagnosis of Intellectual Disability. The intermediate unit can help your child continue the services they had in early intervention, as well as re-assess to see what needs have been met and what still needs support.
Not all children who are eligible for services in Early Intervention qualify for preschool supports, so getting a new assessment at this time is critical. If your child does not qualify for services through the intermediate unit but you still feel supports are necessary, don’t give up! Most qualification decisions can be disputed, or services may be funded through private insurance. If you hit a road block here, reach out to your local advocacy group for help.
Age 5-21 School
Once your child is in school, the district is required by law to meet his or her instructional needs, whether it is one of the services listed above, or others such as adaptive equipment, specialized instruction, or placement in a private school. Unfortunately, it can sometimes be a fight to get these services in place. Educational advocates are available to help you navigate through any problems, if necessary.
If your child has an ID diagnosis, another resource for you now is supports coordination services,. To register with the county for these services, call the intake specialist. You’ll have to meet with the specialist, provide documentation, and choose your supports coordinator, who will help you to create your child’s Individualized Support Plan. Although the school district is responsible for providing services, your supports coordinator can help you find things like activities, summer camps, support groups, advocates, and in some cases help with funding assistance.
If you don’t choose to register your child with the county during elementary and middle school, please do so by the time her or she turns 18. The better the county is aware of your situation post-graduation, the more likely your child is to receive funding, and your supports coordinator can help you through the transition from school to adult life.
21 and on Adulthood
Once your child turns 21 her or she is no longer entitled to any services. The state and federal government have funding programs, called Waivers, to help pay for services your child will need to lead a normal life, such as day programs, residential placements, in-home supports, transportation and respite. These funds are allotted based on need, and the availability of funding will change based on government officials, number of people applying, etc. Financial qualifications need to be met to be eligible for these funds, including receiving medical assistance and having assets below $2,000. Your supports coordinator will help you apply for funding and set up services.
It’s a long and frustrating road to travel, but please know you are not alone. We are a strong, well-connected and knowledgeable community; help is always available to those who need it. If you need individual assistance or have further questions, you can always contact me, Heather Johnson, from The Arc Alliance, at 610-324-8307 or firstname.lastname@example.org.
Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.
Hey readers, remember this blog? We know it has been a long time since you’ve heard from us. Well, there’s a reason for that. Although we haven’t been posting much blog content lately, we’ve still been very busy.
Over the past few months we have been working on how to make this website and blog more useful to you, our readers and members. We’ve teamed up with some other folks with the same goal we have: to help put all of the information Special Needs families need in one place. And we are thrilled to let you know that we have BIG THINGS in store for this site.
First, start expecting more blog posts. But that’s not the big news—the big news is that we have a whole team of guest bloggers and you are going to love them! Behavioral experts, teachers, coaches, case workers, and more—all have agreed to share their insight and wisdom with you right here.
Expect to see regular blog posts on a variety of topics, all of it useful information for families like yours.
In addition, we are going to be posting more updates on our Facebook page—so if you haven’t “liked” us already, do it now! We promise not to fill your news feed with junk—just important updates you need to know.
And, for those who are registered for our E-newsletter, we’ll be sharing more info through email, too. Don’t worry about your inbox getting flooded, though—you will only hear from us once or twice monthly. We know you are busy and you don’t need to be overwhelmed with junk mail, so we aren’t giving your address out or abusing it in any way. So go ahead and register for our E-newsletters if you haven’t already—you’ll be glad you did.
And, please—if you know of a friend or family who could use this information, tell them about us! Remember, we are here as a free resource for you—so spread the word!
Enjoy the start of spring—and we hope to see you back here again, very soon!
One of the ongoing struggles for me, as a parent of a child with special needs, is the unique combination of stresses and pressures that our other kids face.[distance1]
Maybe it’s because I’m certain I’m scarring my children at every possible turn (and not just by insisting that they witness my awesome dance moves), but I’m always curious about how other families handle the sibling relationship, and how adult siblings view their family relationships. I’ve asked for some input from friends and readers about their family and sibling experiences.[distance1]
When I asked my friend Scott about what it was like growing up with his brother Joseph, he explained that Joseph “was my only sibling so there is nothing to compare.” Joseph was born premature with cerebral palsy (and blind from birth) when Scott was 13. While the exact diagnosis was not immediately clear, Scott’s parents told him everything that was going on. As he said, “there was no sugar coating.”[distance1]
Scott shares that he was aware that his parents “constantly struggled with the day to day care” of his brother. He acknowledges, however, that though his parents dealt with huge pressures, “the thing my family did well was using humor as a coping mechanism.” Regardless, he understood from an early age that his brother’s needs occupied most of his parents’ focus, “unless I did something spectacularly good or, in most cases, spectacularly bad.”[distance1]
Lisa is in the very early stages of coping with a new diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, an Autism Spectrum Diagnosis) for her daughter, Ava. As a three year old who also battles epilepsy, Ava’s symptoms were initially masked by her anti-seizure medication. And while Lisa resisted comparing Ava’s development and early progress to that of their son Kyle, “the signals got to be too many to ignore.”[distance1]
Because Kyle was only five when the family began the testing process for Ava, his parents have refrained from sharing many details with him other than explaining that “her brain doesn’t work the same way that his does.”[distance1]
In many regards, Kyle and Ava have a very typical sibling relationship; the siblings share a bedroom and enjoy playing together as well as getting into trouble together. “He treats her like an obstacle, like a hindrance, like a best friend, like a confidant, like a partner in crime.”[distance1]
Lisa admits that she does expect a lot of flexibility of Kyle when dealing with his younger sister. “I know it’s not fair,” she says, “but I try to take the path of least resistance while I am struggling without support.”[distance1]
Looking toward the future, Lisa admits that the thought of managing her children’s ongoing relationship can be daunting and believes that some support groups or counseling could be helpful. However, she feels “overwhelmed” at the idea of fitting such activities into the family’s schedule.[distance1]
Beth is an adult who grew up as the second of three children in a family whose youngest child, and only son, had a variety of developmental disabilities caused by complications during childbirth. David struggled with various health problems, and Beth recalls a childhood of therapists and surgeries for her little brother, as well as ongoing educational challenges.[distance1]
Beth recalls being very fond of her brother when they were children, and taking on more of a protective role as they grew older. She credits this experience with her interest in advocacy. As an adult, she says, “I have assumed the role of second mom.”[distance1]
Looking back on their childhood together, Beth recalls the most difficult part being seeing David struggle. However, she credits David with having been a “uniting force” for her family. Additionally, she feels that her parents served as role models for David of how to have morals and a work ethic, as well as providing an example for the rest of the family through their dedication to David. While she knows her brother would love to live independently, she hopes that one day he will come to live with her and her husband.[distance1]
Listening to these stories gives me hope. I remember being in Lisa’s position and I marvel at how far our family has come. My children have come so far in their mutual understanding and in developing their relationships with each other. While I’ll always worry for their future, I’m inspired by the fondness with which Scott and Beth speak of their experiences, and I’m hopeful that my own children will grow to be similarly respectful and loving toward their brother as they all become adults.[distance1]
Happy New Year from Kokua Network!
On a personal note, my family had a wonderful, joyful holiday season. It was a time full of love and family and fun, in the sloppy, silly, perfectly imperfect way that families like ours know so well.
But, ohmygoodness, are we ever ready to get back to normal! After endless crafts and board games and snow—and braving a once-in-a-lifetime Polar Vortex weather event—it was certainly time to get those munchkins on the school bus this week. And it seems that by the time the bus pulled away, my calendar filled right up for the month.
School meetings, doctor’s appointments, evaluations, scout meetings, therapists…we are starting 2014 with a bang! I feel like my head is spinning a bit (wasn’t it just yesterday that I was frantically searching for last-minute stocking stuffers?). Regardless of the chaos, it is exciting to start a new year and anticipate all of the changes it will bring.
Similarly, we at Kokua Network have jumped into the new year with both feet. We have big plans in store for you, and we can’t wait to get started.
So check the site frequently, because we are adding content, resources, and tools to better serve you. While you’re at it, consider adding your name to our email list by enrolling as a Kokua Network member. Membership is free, and we promise not to abuse your trust—we will only email you when we have big things to share.
And keep in touch! Let us know what information you want and what you’re looking for on our site. We are working to serve you, and would love your input as we make continual improvements on our site.
So, again—Happy New Year! Let’s make it a great 2014!
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.
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?
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.
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.