Objects in the rearview mirror are often clearer

Hindsight is usually 20/20, and it's frustrating as a parent to look back and see all the things we could have/would have/should have done differently. We hope this blog can help with that by sharing what we've learned on the journey so others have more information to make their decisions. This list was compiled by parents whose children have aged out of First Steps about what they wish someone had told them........

Twelve Things I Wish I Would Have Known Transitioning from First Steps

Credit Given -- From Indiana Parents to Indiana Parents

1. That an Individualized Family Service Plan (IFSP) is different from an Individual Education Plan (IEP) in public schools. IFSPs are developmental in nature while IEPs are educationally based. Eligibility criteria differ.

2. That I should attend trainings from organizations such as ASK and IN*Source using the Family Involvement Fund (YOU ARE YOUR CHILD’S Best Advocate!).

3. That I should look into Medicaid Waivers as soon as possible regardless of family income (also CSHCS and SSI…income requirements for these).

4. That I can bring anyone I wish with me to the case conference (family, First Steps providers, and other advocates).

5. That First Steps providers and coordinators are making recommendations, not decisions for my child.

6. That my child has the right to receive special education services where children without disabilities are served such as community preschools or other transition options like Head Start (pending qualification requirements), if appropriate.

7. That I can join listservs and support groups to learn valuable information from other parents.

8. That I should begin setting up therapy coverage by insurance BEFORE transitioning out of First Steps (has taken some families 3 months).

9. That I need to read and re-read and Article 7 so that I know my rights and I can make the best, informed decisions for my child PRIOR to my case conference.

10. That extended school year services are available to preschoolers if certain criteria are met.

11. That in First Steps, every family is entitled to a service coordinator, but there is no similar requirement for preschoolers.

12. That I can change my mind!! Options you choose may be modified to best suit the needs of your child.

A Time for Thanks

By Kathie Snow:

As the Thanksgiving holiday nears, it’s time to reflect on the many things for which we’re thankful. I hope you’ll take time to share your appreciation for others—to personally tell people, “I’m thankful for you and what you do!” Words of appreciation can make someone’s day and inspire more great deeds! I’m thankful for:

• Everyone who uses People First Language and promotes positive images of people with disabilities.

• People who don’t pepper their vocabulary with disability-labels-turned-insults (such as idiot, moron, imbecile, lame, retarded, etc.) and who don’t use disability labels as metaphors (like “he turned a deaf ear,” “she was blind to…,” “the economy was crippled by…,” and so forth).

• Parents who have high expectations and dream big dreams for their children with disabilities—and their other children, too—and then do whatever it takes to support those dreams.

• People with disabilities who teach us what’s really important.

• Parents and professionals who recognize the expertise of adults with developmental disabilities.

• Parents and Early Intervention workers who ensure very young children with disabilities remain “babies in their natural environments” instead of the youngest “clients in the system.”

• Parents who choose to keep their three- and four- year-old children at home or in other typical settings instead of in segregated, special education settings.

• Educators who make inclusion work.

• Parents who know that inclusion in all areas—not services—is the path to their children’s success.

• Therapists and other professionals who practice as consultants and provide technical assistance so parents, teachers, and others can ensure children and adults with disabilities can engage in beneficial activities in the most natural ways possible, in natural environments—so they can live Real Lives.

• Physicians, nurses, and other health care professionals who help parents remain proud of and hopeful for their children with disabilities, instead of plunging parents into the depths of despair with dire prognoses.

• Parents who stand up for their children and reject the negative comments of doctors, therapists, educators, or others who presume to know the value, abilities, or potential of a child, based on a medical diagnosis.

• Parents who protect their children from attitudes, language, services, and interventions that destroy self- esteem and crush self-determination.

• People who embrace the paradigm that disability is natural, and who know that a person’s abilities, interests, and dreams are more important than a diagnosis.

• People with disabilities and family members who know that accepting services is a choice, not a mandate, and, as a result, they make thoughtful decisions and use the system as The Last Resort, not The First Choice.

• Providers who proactively collaborate with non-disability entities in their communities to meet the needs of people they serve in typical, inclusive settings.

• People with disabilities and family members who seek and find assistance, inclusion, reciprocity, and support from the natural supports in their communities.

• People who recognize the value of assistive technology, and who do whatever it takes to ensure people with disabilities have the tools they need to succeed.

• People who recognize the immorality of segregating individuals with disabilities—whether in special ed preschools, special ed classrooms, congregate living arrangements, day programs, sheltered/enclave work, and other “special” (segregated) activities.

• People who know that inclusion is borne not from laws, programs, and services, but from our individual and collective hearts, minds, and actions.

And I’m thankful for everyone who reads this message, shares it with others, lives it, breathes it, and commits to doing whatever it takes to create a more welcoming, inclusive society for all.

Happy Thanksgiving!

©2001-06 Kathie Snow, www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. As a courtesy, please tell me mailto:kathie@disabilityisnatural.com) how/when you use it.

More parenting "road" rules

Raising a “typical” child brings predictable milestones, phases and challenges. You know generally what stage is coming next and approximately how long it will last. When raising a child with special needs that predictability can go out the window. Kids with special needs accomplish things in their own way and in their own time. We as parents need to accept this and appreciate our children for who they are.

You can find ideas for activities you can do at home to support early intervention here. Below are some tips to help guide you on your child-rearing journey:

• Don’t compare your child with special needs to typically-developing children. If you tend to compare your child with his typical peers, you may focus on what’s missing or how far behind your child is. Focusing constantly on needs can begin to feel more like managing a “project” than simply parenting your child with unconditional love.
• Adjust your standards. All parents have dreams for their child. All parents have to make some adjustments as their child grows and develops. This can be a bigger task for parents of children with special needs. The future may seem less predictable and milestones may seem less clear. Focus on the present and set your standards for your child at an appropriate level.
• Maintain behavioral expectations. It’s tempting to be lax and let a child with special needs get by with behaviors we wouldn’t tolerate in other children. EVERY child needs to know, early on, what behavior is expected. Start early; it’s easier to teach a child what you expect when he is young than to try to correct bad habits as he gets older. EVERY child must learn to adjust to family routines, to follow rules, and to develop an age-appropriate level of self-discipline.
• Everyone in the family has needs. If parents devote too much family energy to the child with special needs, it leaves nothing for the rest of the family or for the marriage. What your child needs most is a stable, loving, happy family. Also, be sure to devote the time it takes to make your other children feel special.
• Provide structure. Children with special needs require developmentally appropriate structure. Family routines make life more manageable for everyone. However, it requires some sensitivity on your part, so tune into what your child needs and when.
• View behavior as communication. Everything children do tells something about what they need. This principle is particularly true with children with special needs. Address the behavior by first looking for the need behind the behavior. Maybe a child pinches others as a way to communicate. Replace this behavior with another, socially acceptable behavior that still meets the need. Chances are the behavior will disappear if the need is met.
• Help your child develop a sense of responsibility. Sometimes people tend to rush in and do things for a child who struggles. Maybe it just seems easier to do it yourself than to wait for your child to complete a task on her own. However, the sense of accomplishment that accompanies being given responsibility gives a child a sense of value and raises self-esteem.
• Offer choices. Having the ability to make a choice makes a child feel important. Be sure your child understands the choices. Use pictures, pointing or whatever works best with your child to express them. Giving choices also enables you to learn about your child’s preferences and abilities.

Perhaps the most important tip is to value your child for the person he is and who he will become with your guidance. (from First Words June 2005)

Most journeys begin with "First Steps"

If you suspect your infant or toddler has a disability, or developmental delays, you should talk to a doctor about it. While doctors have the best interests of children and their parents in mind, they may hesitate to intervene when they are not yet overly concerned themselves. Parents often leave the doctor's office with a false sense of security about their child's growth. To validate your concerns, you can print out these month-by-month pages and check the signs you see in your baby. It may help to keep a detailed log of the concerning behaviors your child exhibits. If you doctor wants you to "wait and see" you can ask for a second opinion, or make a referral to First Steps yourself.

The goal of First Steps is to help Hoosier families make sure their infants and toddlers receive services now to help them in the future. The first three years of your child’s life are so important. Human learning and development are most rapid in the time from birth to age 3. That’s why it’s important to give a child the best start possible. The earlier a child with a disability or a developmental delay is diagnosed and gets help, the better that child’s ultimate quality of life.

There are several Steps to First Steps. You should print out this checklist to help ensure the process happens in a timely manner.

State Contact: 1-800-441-STEP (1-800-441-7837)

Local Contacts: To make a referral to the First Steps System, e-mail or call the Cluster System Point of Entry (SPOE) in your area:

• First Steps Cluster Map
• Cluster Specific First Steps Websites

The first thing the First Steps Intake Coordinator can do to help your infant or toddler get help is to schedule an initial assessment and evaluation. This service is paid for by First Steps and brings you together with a team of professionals or multidisciplinary team to identify any developmental delay or disability and recommend early intervention services that may benefit your child.

After the initial assessment and evaluation, it may be determined that your child is eligible and in need of early intervention services. An ongoing service coordinator will assist you by being the one person responsible for coordinating with all the various agencies who may provide services for your child, minimizing “red tape” and saving your family time, energy, and needless expense.

First Steps is “family-centered” in that services can support your family in the daily routines and activities of everyday living. To do this, you and the Service Coordinator sit down together to review the results of the assessment. Based upon your concerns, you will discuss what services your child may need, what resources are available to you in your community, what your family’s priorities are, what your family’s resources are and last, but not least, your hopes and dreams for your child.

This information then is written into the Individualized Family Service Plan (IFSP), which is a “road map” or action plan for the services your child and family may receive. It includes your major goals for your child; how progress will be measured; what and where services will be provided; when they will begin and for how long; methods of payment; and transition upon the child’s third birthday.

If you would like to talk to other families or find other resources in your area, you might want to contact Family to Family. They can connect you with a parent liaison or parent mentor who can help you if you need it. You can also contact Family to Family by phone: 1-800-964-4746 or email: familynetw@aboutspecialkids.org.

Children are constantly learning, right from birth. Their early years are the foundation for growth and development, and what they learn during those years depends on the experiences they have each and every day. This is our greatest challenge as caregivers, as well as our greatest opportunity.

Time to refuel your tank

Including Samuel

By Dan Habib

When Samuel was four years old, I sat at his hospital bedside as he lay in a medically-induced coma. He had developed pneumonia from complications following surgery. Samuel's neurologist, Dr. James Filiano, encouraged me to be a photojournalist in the midst of my fear. "You should document this," he said.

That moment pushed me in a new professional, and personal, direction.

Samuel is now seven. He has cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair and it is difficult for him to talk. "Including Samuel", the 58-minute documentary film his doctor inspired me to create, is being released nationally this fall.

When Samuel was about a year old, my wife, Betsy, and I would stay up at night, comparing notes: What did Samuel do better that day? What did he do worse? We also have an older son, Isaiah, 11, but Samuel's disability tested our parenting skills in new ways. "How could he get a full education and go to college when he can't hold a pencil?" Betsy wondered.

Having Samuel forced me to look at my own prejudice. When I saw people who couldn't walk, or talk, what crept into my head? It's painful to admit, but I often saw them as less smart, less capable, and not worth getting to know. I began to wonder: is that how the world sees Samuel?

"Including Samuel" is built on our family's efforts to include him in our school, our community, our family -- in every aspect of our lives. Samuel's life is the central thread through the film, and I want viewers to learn a lot about him beyond the fact that he has a disability. He wrestles with his brother. He loves T-ball. He wants to be an astronaut when he grows up.

My experience is that parents of children with disabilities face a different balancing act. One big struggle is balancing time spent supporting a child with a disability vs. the family's other child(ren). Others include marshaling the time, energy and financial resources needed to manage a child's medical care and therapy, and the scarce resources left for yourself, your relationship with your spouse, and your work.

Samuel is only seven, and including him will probably be more and more challenging as he grows up. I also made this film to learn from the experiences of other people with disabilities who can look back on the choices they made, and their parents made, and how these choices affected their lives. "Including Samuel" also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff. The film chronicles the impact inclusion has not only on them, but also their families, educators, other students, and their communities as a whole.

Samuel brought the disability rights movement into our living room. Every day it brings new questions and explodes traditional conceptions of work/family balance. As Samuel grows up, what can we do to make sure that people see cerebral palsy as only one part of who he is? Can we continue to fully include him as he goes to middle and high school? What about the times when inclusion has to take a back seat, as Samuel misses weeks of school to get through another health crisis?

I don't know the answers to those questions right now. But I know that Samuel loves life. He's got a great smile and he's a die-hard Red Sox fan. He wants to keep up with his brother, and be a part of everything that we do. He will teach a lot of people, which is good because the world has a lot to learn.

My hope over time is that the film will inspire the public, especially anyone connected to education, to work towards inclusion in a more informed, balanced and innovative way. My hope today is that you will tell me about your perspective on, or experience with, "balancing" your life with a disability.

Caution: dangerous "curves" ahead

Bewildering Times

By Robert Perske

You will have them, all right.You may wonder if you are losing your mind. Probably not. But strange times will come, and getting through them takes energy and grit.

Some experts have described in detail the stages you are expected to face. The only trouble is that parents who are adjusting to children with disabilities do not follow a set course. Each parent reacts differently.

Here are a few oversimplified descriptions of stages you may--or may not--experience. And many parents could add to this list.

The Drags. It is as if your spring had run down. You feel so tired you can hardly drag yourself around. The sun may be shining, but to you the day seems cloudy. You may feel a lump in your throat or knots in your stomach. It is hard to breathe, and every once in a while you may hear yourself sighing. You may even wonder if you have the flu. When these times come, you wish you could find a warm cozy hole, crawl into it, and close a lid after you.

This may be your minds' way of telling you that "out there," there is too much to take. So you slow down, withdraw, move within yourself, interact less with the world around you, and take some time out. This is OK, providing you do not stay out too long.

The Speeds. When this sage approaches, you feel as though somebody has wound your spring too rightly. You move around at a frenzied pace

so much to think about

so much to do

so much ground to cover

so many places to go

so many people to see.

It is as if a combination of the Ten Commandments and St. Vitus Dance energizes your movements. Many new ideas and concepts which need to be acted upon come to your mind. It is your personality's way to "get at it," even if some motions are wasted.

The Blocks. Tough news came from the doctors. But somehow your ears refused to hear what they told you, and your eyes remained blind to the evidence they presented. The knowledge that your child possesses a disability is hard to take. You may even talk to others as if your child has no disability. This is OK for a while. Parents' minds need time to change from believing their child's a super baby to seeing that child as he or she really is. It is all right to make this shift slowly. But it is unhealthy if it is never made.

The Hurts. No professional can describe all the types of anguish and pain parents feel. Nevertheless, all of them hurt; they hurt badly!

Such pain can force you to become edgy and nervous; to walk floors or lie awake all night, tossing and turning; or to break down and cry--fathers included.

Bear in mind that when you do feel such pain it may be your body and mind saying to you that you are strong enough to bear the hurt you must feel. It is my hunch that you will never suffer pain beyond what you can endure. There are many mechanisms within you to dull the senses when things become overwhelming. Some people can become stronger from enduring pain.

If you happen to be hurting while reading these sentences, you may feel anger towards the author of these words. That is OK, too. This book is not intended to bring you comfort. Its purpose is to help you grow and adjust so that you can accept, love, and act creatively on behalf of your child. You cannot do this without experiencing some hurts, enduring them, and working your way through them.

The Guilts. At times you may feel you have committed some horrible sin against God and man. You may even look deeply into your past, searching for that single horrid act that caused it all. But I am willing to wager that no matter how hard you search, you probably will never find such a cause.

Nevertheless, on some days you feel sure that you must be the worst human specimen on the face of the earth. Somewhere, somehow, you committed an unpardonable sin, and now you are paying for it.

Such guilt is phony. It is not the same kind of guilt you feel when you are caught with your hand in the cookie jar—or when you commit other real transgressions of greater magnitude. Therefore, you need not drag out all the black things in your life, examining them one by one. This exercise only gets in the way of adjusting to your child.

The Greats. While a few days earlier you may have felt that you were the world's worst mom or dad, now it may come to you that you are one of the greatest. You secretly may feel that God has chosen you to bear this extra burden because you are more special than other human beings.

Of course, it is more pleasant to fantasize yourself as being great. It is better than feeling you are the world's worst. So enjoy it while you can. But be careful. Sooner or later somebody will say or do something to send you crashing off your pedestal. When that happens, it is to be hoped you will not fall into the guilt trap again. Instead, you achieve a fresh stability from knowing you are not a superparent. But you aren't a superdemon either. You have your weaknesses and strengths, like everyone else.

The Hates. After hurting for a time, you may search irrationally for chances to blame others and hurt them. Almost anybody you can think of may become a target:

your spouse, your neighbor, your doctor, your minister, your children, your parents, or in-laws.

So you watch and wait. Sooner or later, someone--being human--will say or do something to “justify” unleashing your anger at them.

Fortunately, your gracious friends and relatives often remain unruffled when you blow your stack at times like these.

It is all right to feel such anger and hatred, even though it is irrational. Acting on that anger, however, can be precarious. It could make others hurt…then you hurt because you caused them pain...and the vicious circle starts over again.

The Escapes. Sometimes when you awaken at 2:00 A.M., you may wish you could close your eyes and never open them again. These wishes usually will remain secret because you will be ashamed of them. Nevertheless, many parents of children with disabilities openly confess to going through states when they felt such an urge to escape. In spite of such in-the-wee-hours-of-the-morning urges, grit your teeth and hang on. By the time the sun rises, the situation often looks brighter.

Have a destination in mind

“To begin with the end in mind means to start with a clear understanding of your destination. It means to know where you’re going so that you better understand where you are now and so that the steps you take are always in the right direction.”
Stephen R. Covey

While I know that the day to day demands of a raising a child with a disability can be overwhelming, I'm still going to ask you to look to the future. Why talk about the future so early in the journey? The answer is simple: if you don't have dreams and a vision for your child, then it's easy to give in to the plans and expectations of others. If you want your child to have the same opportunities that his peers will have, you're going to have to develop a plan; and, as much as possible, include your child in this. No matter how challenging the disability, we can still help them achieve the best possible life. What did you want for your child before s/he was diagnosed with a disability? Which of those dreams can you still turn into a reality, even if it looks a little different than you had imagined?

Families frequently make decisions about their child with a disability on the basis of their fears of what might or might not happen rather than the interests, talents, and capabilities of their child. Rather than forcing themselves to consider the opportunities, families can become immobilized with their fears of failure or their refusal to take any risks where their child with a disability is concerned. Instead, encourage your child to attempt new things. It's ok if they aren't always successful; children without disabilities aren't always successful either. Look for your child's strengths rather than his weaknesses.

One of the ways to achieve this is to connect with other families with older children. What things have been possible for them that they might have once imagined impossible? If you have limited contact with self advocates (individuals with disabilities), then try to change that. Few things have made a bigger impact on my vision for my child than speaking with adults with disabilities who have achieved their own dreams. A starting point might be to view the video the Self Advocates of Indiana has produced: Our Voice Counts.

If you can develop a positive vision for your child, than you can help create the life they want. If you let the professionals, the teachers, the therapists, and others create that vision, it may not have the same outcome you had hoped for. If you want your child to live independently as an adult, then help him develop that independence-give him chores, let him cook with you, take him shopping. If you want your child to go to college, then lay the groundwork for that. He may be auditing classes rather than working toward a degree, but he can still have the experience.

If you're shaking your head saying "she doesn't understand my child-those things aren't possible for him" then you aren't listening. You may have to dream new dreams, but they are still possible.

More "trip" insurance (Medicaid waivers)

We've talked about CSHCS in previous posts. There's another program many families fail to apply for: Indiana's Medicaid waivers. It is our equivalent of the Katie Beckett waiver. It allows children and adults who would be eligible for a nursing home or institution to waive the right to that placement, but to request that those service be used in the home and community. It also waives the income of the family so a child under 18 can get Medicaid even if the family is over income for other types of Medicaid. If your family has income based Medicaid, you should still apply for a waiver because it provides additional services not covered by traditional Medicaid (respite, home modifications, supported employment, etc); and if you can't get Medicaid because you're over income, it will allow your child with a disability to get Medicaid and waiver services if eligible.

I'll use my experience to help explain this:
My baby was in the hospital for months because she had a trach and a gtube and was on a ventilator. The only way I could safely bring her home was to ensure I could meet her medical needs at home. We had private insurance and CSHC, but there were still co-pays and services those programs wouldn't cover. The Aged and Disabled waiver allowed us to get Medicaid for our baby. It meant we could have nursing care in our home. It meant we could get WIC to pay for her formula. And, as she got older, it paid for diapers, Pediasure, a ramp for our home and other things we needed to care for and support her.
How does this work?
We chose to keep private insurance for our child so that was billed first (you CAN elect to drop your child from private insurance when you have Medicaid, but you need to consider that it will limit your choices for doctors and services). Next, if there was a copay or a denial, the bill went to Medicaid. If they paid it, it stopped there. If they denied it, like respite, it was sent on to the waiver unit. If it was a waiver service, it was paid for. If there was still an item all of those wouldn't pay for, like mileage reimbursement to take her to appointments at Riley, then we billed CSHC. She had as many layers of coverage as we could acquire for her. It saved us from financial strain and gave her the supports she needed to thrive.

Many families actually get the consumer's guide and/or the application and don't apply. Many don't understand what they're signing up for. Many don't want to fill out an application that says "long term services" because they think their child will have to live in an institution. Many don't apply because the waiting list is so long. You need to get your questions answered and SIGN UP NOW!

To learn more about the program, you can find the consumer's guide here. It will list all of the services your child might qualify for. You can sign up for EVERY waiver you think you might be eligible for. There's a waiver fact sheet at The Arc. And, some schools have waiver sign up nights where you can get help filling out the application. If your district doesn't have these, ask your child's special education teacher to consider hosting one. Family advocates at The Arc can then present info on the waivers and help you complete the applications. They will do this on a 1:1 basis as well. Just call The Arc ( 800-382-9100 ) and ask for a family advocate to help you sign up and answer any questions you may have.

There is currently no waiting list for the medically based Aged and Disabled or TBI waivers. You can apply for those by calling your Area Agency on Aging and asking for a phone interview. If your loved one has a developmental disability, including autism, you can sign up for those waivers by sending an application to your local Bureau of Developmental Disabilities Services office. Keep a copy of the application for your own files. You will be asked to complete a DDP (disability determination profile) to be placed on the waiting list. Be sure to highlight your child's support needs in this interview. If you are placed on the waiting list, the current wait is 8-10 years long. While you are waiting, be sure to ask for the caregiver support respite hours that are available. It's a good idea to call every year and check on the application's status and ensure they have the correct contact information for you.

In the meantime, contact your legislator and share your struggles to care for your child. Urge them to END THE WAITING LIST!

The Limo Ride

At some point during my son’s first year of life my husband and I stood blurry eyed looking out the window at Riley Hospital. We were watching a family leave the hospital in a limo. That family was celebrating the fact that their child was well and that they would not be back. My husband looked at me and said, “let's plan to do that”. We agreed that leaving the hospital without all the stress, fear, and heartache would be “limo ride worthy.”

I tell this story because we never had that limo ride. For our family, the journey to answers and understanding of what turned out to be a lifelong disability was long and painful. In those early years, the doctors were stymied; alternatively hopeful that a treatment or surgery might solve the problem, and pessimistic with doom filled predictions of a very short life. I envied the family in the NICU next to me; their baby had Down Syndrome. They knew what they were dealing with, had a bag full or handouts, and referrals to support groups. I had a mystery. As we bounced around for years without a diagnosis of an underlying syndrome, it seemed impossible to plan for the future, to know what to expect; and it often seemed like life had become a series of medical crises without resolution. Some answers did eventually come by the time my son was in kindergarten: we had a syndrome name and a clear understanding that we were in it for the long haul—our limo was not coming and we had gotten over waiting for it sometime in the preceding years.

This journey did “teach me” and I hope some other family “wandering to a diagnosis” might benefit from my road:

• Your gut is right I have never regretted the nights spent sleeping on the floors of hospitals when I knew something was not quite right (I have prevented the wrong meds or the wrong test and I have learned about what works best for my child

• HOPE is your right I know that people have wondered about my family's “denial issue” from time to time. But my “terminally ill son” is alive today; and his college plans are just as realistic as all of his peers

• Don’t let a lack of diagnosis stop you from applying for things We waited to “know for sure” and paid for our mistake with extra time on waiting lists

• Don’t let predictions of a shortened life span prevent you from accessing services I remember one of my first moments of empowerment—I refused to put off First Steps any longer even though our pediatrician indicated that my son would not live long enough to reap its benefits

• Learn from ANY group Not having a clear diagnosis forced me to interact with lots of different disability and medical advocates to piece together the information my family needed. Today I find this to have provided me a HUGE base of knowledge and connections. I am even thankful that I had to go beyond one support group.
  

If you are among the lucky ones whose time dealing with a child’s serious medical concern is short and resolved, you should celebrate-take the limo ride! But please also remember what you learned from your experience. I bet your new perspective can help to make the road smoother for others.

Time to refuel your tank

I want to make sure you know there are sources of inspiration out there if you need a lift. I mentioned Welcome to Holland in my first post and if you haven't read it, you might want to do that. There are sequels, Celebrating Holland, and spin offs, Welcome to Ireland for multiples, as well.

There probably isn't a story that brings tears to my eyes as quickly as that of Dick and Rick Hoyt:




We'll share these periodically as a "pick me up" for those times you might need one. We all do........

Ask about "trip" insurance (CSHCS)

Sometimes other families and professionals who are aware of my experience ask me what I wish I had known when my son was born. They are surprised that my answer is never about hope or dreams. Hope and dreams are important but, what I most wish I had known about is Indiana's Children's Special Health Care Services. Our family struggled with the financial impact of having a child with significant needs. We were told that being “middle class” with private insurance meant that we would not qualify for any programs. Our insurance, while helpful, did not touch the costs we faced and quickly we were overwhelmed. As we sought information we were again and again wrongly told that there was NOTHING that could help.

Children's Special Health Care Services (CSHCS) program is supplemental insurance that provides financial assistance for needed medical treatment to reduce complications and promote maximum quality of life for children with serious and chronic medical conditions. When I learned about this program when my son was almost THREE years old I was amazed to learn that not only did we qualify, it exactly met our needs and allowed us the critical support to get the medical care our son needed. And there was/is NO waiting list! Eligibility for Children’s Special Health Care Services is based on both medical and financial criteria. If you have a child with a medical issue of a diagnosed disability I urge you to learn more and apply:

A family with an income (before taxes) under 250% of the federal poverty level may qualify.

Household Size	Income (Effective Date January 23, 2008)
2	$35,000
3	$44,000
4	$53,000
5	$62,000
For each additional member add:	$9,000

You can apply at your county Division of Family Resources (DFR) office, a local First Steps office (for children 0-3) or at the CSHC office located at Riley( Hospital Room 1950) in Indianapolis. If you have difficulty reaching your local DFR, need assistance, or prefer an application be mailed to you, you may call CSHCS Customer Service at 1-800-475-1355.

To complete the application, you'll need:

• your child's birth certificate

• proof of residence (rent or property payment receipt, voter's registration,

driver's license, last year's federal income tax return, or city directory listing)

• health insurance information

• proof of parent(s)/guardian(s) income (three consecutive current paycheck

stubs or recent federal income tax forms)

• Social Security number of child

You can also download the application by going to: http://www.in.gov/isdh/files/CSHCS_Application_-_04-08.pdf

If we had know about this earlier, we would not still be climbing out of medical debt a decade later.

"Road" Rules for Parents

1. Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.
   
   
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
   
   
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
   
   
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
   
   
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
   
   
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
   
   
7. Be honest with your feelings. You can't be a super-parent 24-hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
   
   
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
   
   
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
   
   
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

~author unknown

Ask for "roadside" assistance

Don't be afraid to ask for help! Hubby and I talked about the fact that I would probably have to stay home to care for our child, so we needed to swallow our pride and accept assistance. When our child was born we were lucky enough to have a case worker at the hospital. She made sure we were signed up for First Steps, Children's, the Medicaid waivers, etc before we even left the hospital. They also gave us a voucher to get a free special car seat from the gift shop to take her home. Once the waiver kicked in and we were able to access Medicaid, I contacted the WIC office to see if I could get her specialized, EXPENSIVE, formula there. I could. You might also want to check with your local health department to see if you can get reduced cost vaccinations. Another program for this is Vaccines for Children. If you need help paying for your child's medications, you can look in to Rx for Indiana.

Find educational consultants, psychologists, educational diagnosticians, health care providers, academic therapists, tutors, speech language therapists, occupational therapists, coaches, advocates, and attorneys for children with disabilities on the Yellow Pages for Kids for Indiana.
Another resource for this type of information is NICHCY (National Dissemination Center for Children with Disabilities). A local resource can be accessed by dialing 211. 2-1-1 is a three-digit phone number anyone can call to get information about health and human services. Call 2-1-1 if you need information on housing, employment, legal aid, counseling and much more.

There are a variety of resources for seeking assistance for you and your child. Sometimes (too often) families feel are told that they don’t qualify for any services and support or that there are not any resources near them. I have found that it is helpful to “check and see” what is out there from time to time. Asking and learning has led my family to services that we had no idea even existed.

Learning the language

Parents are often faced with learning a whole new language when their child is diagnosed with a disability. Professionals, in particular, tend to speak in acronyms and abbreviations. Don't be afraid to ask them what they mean. There is a list of common acronyms at IIDC (Indiana Institute on Disability and Community). It has been my experience that even professionals don’t know what all the acronyms mean. By asking, you may be helping to make sure all the people working with your child are understanding each other's language.

IIDC also maintains a library of videos, publications, podcasts, and books on various disability topics. You can borrow them for free through your local library-just ask the library for an interlibrary loan.

Once you feel you have a grasp on the basics, you might be interested in additional training to learn more about different topics. There are several trainings offered every year. A list of early childhood (0-6 years old) events here. You can find online archived trainings at the Family to Family Library - Online Training Topics:

1) An Introduction to Special Education

2) Turning 3 - Ready, Set, Transition!

3) Behavior as Communication: What is my Child Saying?

4) Locating & Navigating Community Resources

5) Medicaid Waivers: What You Need to Know

You can find statewide trainings on IEPs and Healthcare Financing at ASK. There are trainings on special education topics listed at IN*Source. State and local listservs and support groups are often a source for conferences and local training opportunities.

For help with paying for these trainings, you can apply for the Family Involvement Fund, the Consumer Investment Fund, or request funding from your child's school under parent training in the IEP.

We'll look at other training opportunities in future posts.......

Charting your course

When I was pregnant, my baby shower theme was Beatrix Potter. I decorated the nursery with all the new goodies and paged through the baby book-blank pages just waiting for me to record all the details of height and weight, eye color, hair color, etc. I was going to be better at it than my mom. I would record every single moment!

Of course, that nursery was empty for months while my baby struggled at the hospital. And those pages were blank for a long time... I had other things to worry about. When I finally did get a chance to breathe and page through it again, all I could see were the blanks that would remain that way......for a long time. How long would it be until she rolled over? Would she ever take her first steps? Would there ever be a first word?

It took awhile to dream new dreams, but we got there eventually. There WERE important milestones to record, they just may not have been in the standard baby book: the day she was weaned off her night drip feedings; the day she got her Mickey button instead of a foley catheter; the day she took a walk in the neighborhood with her oversized Riley red wagon..... If you read Erma Bombeck, you realize that you will probably notice all the little things that other mothers miss. You will recognize them for the miracle they are b/c they didn't come as easily for your child. So take time to celebrate them. Make your own baby book, or shop for the few that exist.

As much as you might like to burn the original baby book, there are milestones you should be looking for. If you don't have a diagnosis yet, but you know "something's not right", there are developmental checklists you can look at to see how your baby is progressing. Every child is different, so allow for a little wiggle room, but if you suspect there's something that needs to be addressed, talk to your child's doctor about it. If they don't act on it the way you'd like, seek a second opinion. Early intervention is shown to really help, so the sooner you can start, the better.

We'll talk more about managing the paper trail in future posts, but be sure to keep records and develop your child's medical history. You can find a care notebook here if you'd like a sample of what to record.

Don't be afraid to stop and ask for "directions"

You might have read What to Expect When You're Expecting while you were pregnant. I did. Other than a brief mention of prenatal testing, there weren't any chapters on delivering a child with a disability. No one told me they might rush my baby to the Children's Hospital, leaving me with an empty room. No one told me that doctors don't know everything and that I shouldn't be afraid to question them. No one told me I'd have to watch my newborn undergo surgery ......

There were a LOT of things no one told me, and I hope to share some of the things I'd include in my version of What to Expect in the Coming Years:

• It's ok to grieve. Be thankful your baby is alive, but go ahead and mourn the loss of some of your dreams. And learn to dream new ones.......
• It's ok to ask for help. Ask your family to support you. Ask your friends to watch your other children. Ask to talk to a social worker or other professional.
• It's ok to question the doctor and other professionals. Seek a second, or third opinion if time allows. Follow your instincts if you think something is wrong.
• It's common for this to put a stress on your marriage if you're married. Seek help if you need it.

*Note: Some of these links take you to state agencies that are funded to assist with these issues. If you do not get the help you are seeking, be sure to let their director and/or board of directors know.

If you'd like to talk to other moms who have a child with a disability, look for support groups. You can find some here. If you have a Children's Hospital near you, they may have a resource center that can connect you with other parents as well.


If you are at a Children's Hospital, ask to speak with a social worker.You and/or your child may be eligible for a number of programs:

Children with Special Health Care Needs Insurance
Hoosier Healthwise
WIC
Medicaid Waivers
CHOICE (Community and Home Options to Institutional Care for the Elderly and Disabled)
SSI
other benefits from FSSA

Some of these programs can seem overwhelming and confusing to apply for. It is OK to ask for help; if you don’t get the information and support you need to understand a program, you can and should ask to speak to a supervisor. You can also contact ASK for more information on health care financing. The Arc of Indiana has family advocates that can help you apply for Medicaid waivers.

Your child may not get a specific diagnosis, but may fall under the general category "developmental delay". If the child is 0-3, you can ask for assistance from First Steps, Indiana's early intervention program. If your child is older than 3, s/he may be eligible for special education services through the public schools. You can find more info on making a referral to special education here or through IN*Source.

Learning and connecting while you are also juggling medical issues and appointments can feel overwhelming. You may need to apply for one program at a time. Many families find it helpful to keep a notebook or folder documenting the programs they have connected with and photocopies of the applications.

It's going to be a bumpy ride.....

As mothers of children with disabilities, we share similar experiences; we speak our own language; we often know more than professionals because we've lived it-not read it in a book. We tell one another which pacifier works best for a baby with a cleft palate, what sensory toys work well for some of our children with autism, and which speech therapists specialize in children with Down Syndrome. We have our crumbled copies of Welcome to Holland, dog eared pages in The Out of Sync Child, and sticky finger copies of We'll Paint the Octopus Red.

We want to use that collective wisdom to help one another navigate the systems and services that we encounter on our journey.

If you have stories to share or topics you'd like us to cover, please send them to real.IN.mom@gmail.com. We will protect your anonymity, as we are protecting ours. We want to be able to share the honest, sometimes hard to hear, truth about the hurdles we face without fear of repercussions.

Even though we're all at our own points in the journey, we're going to start at the beginning......Fasten your seat belt; it's going to be a bumpy ride.