5 Tips for Attaining a Special Needs Diagnosis, Part 1

5 Tips for Attaining a Special Needs Diagnosis, Part 1

5 Tips for Attaining a Special Needs Diagnosis, Part 1

Waiting for the professionals to make a special needs diagnosis is hard work. But according to guest blogger April Brownlee, parents can do more than just wait. They can advocate. Today and tomorrow, she explains her top five diagnosis advocacy tips.

5 Tips for Attaining a Special Needs Diagnosis, Part 1

Years ago, long before my daughter, Catherine, was diagnosed with a syndrome, I found myself in this abyss of symptoms, doctors, tests, and still no answer. I don’t know if there’s a worse feeling than not knowing, because at least if you know what you’re dealing with—even if it’s something awful—at least then you can fight.
It was about that time I heard an interview with Dr. Jerome Goopman from Harvard Medical School, about his then new book, “How Doctors Think.” During that interview, Dr. Goopman delivered a statistic that, to this day, remains one of the most polarizing things I’ve ever heard. He says doctors make up their mind about a patient within the first 18 seconds of seeing them.  It was after hearing that interview that I began to realize how naively I had approached our search for a diagnosis. I just assumed we’d get an answer. And, even worse, I just assumed doctors would see my child, input all her symptoms into their brilliant brains and automatically tabulate a diagnosis.

Since then, I’ve learned so much about the pursuit of a special needs diagnosis.  It’s a journey and we’re not promised a swift resolution, but there are things you can do to make the process more efficient and more effective.

Tip #1 for Attaining a Special Needs Diagnosis: Tell Everyone

It sounds so simple, but all too often, we tend to keep such deeply personal things as medical issues to ourselves. Before my daughter was diagnosed, I may have accosted a nurse—or two—at birthday parties. In my defense, they asked how it was going. I just responded with a very long medical history and might have even produced a checklist of symptoms. I imagine once they thought I was nuts. And I might have been. Staying up all night worrying and Googling potential diagnoses takes its toll eventually. But I truly believed if I told enough people someone would say something that would be the catalyst we needed.

Tip #2 for Attaining a Special Needs Diagnosis: Keep a Journal. And Impeccable Records

Before each appointment with a new doctor or specialist, I would send their office a letter briefly outlining our situation, along with a timeline of our journey, list of primary symptoms, list of specialists, and list of tests already conducted.  Some doctors read the information and some didn’t. But for those who did, I found our appointments to flow better and generally be more fulfilling.  I would also show up to each appointment with my binder of records. Anytime a test was ordered, I would get my own personal copy of the results to add to the binder. If a doctor had a question, I could then quickly produce the answer. Plus, it just made it easier to keep it all straight.

Come Back for More Tips Tomorrow

Oh, I wish I could learn some of April’s organizational skills by osmosis! But since that’s not gonna happen, I’ll be back tomorrow with three more of April’s wish-I’d-thought-of-that tips.

Five Tips for Attaining a Special Needs Diagnosis: Part 2

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Teens and Autism: Top Ten Things to Know

Teens and Autism: Top Ten Things to Know

Teens and Autism: Top Ten Things to Know

The teen years can be difficult ones. Throw autism or other special needs into the mix and what do you get? A need for some advice and encouragement from people who know about special needs and teens. People like Agnes Jimenez at My Autism My Voice. She blogs and writes about teens and the stresses in their lives.

Teens and Autism: Ten Facts Parents Need to Know

Here are ten facts Jimenez wants parents to know:

  1. Because autism is a spectrum disorder, it can manifest as very mild or as severe, with difficult behaviors to manage.
  2. Asperger Syndrome is on the autism spectrum.
  3. You can’t pigeonhole autistic teens. They are individuals, like anyone else.
  4. There is no cure for autism. There are, however, many treatments that can improve the life of a teen.
  5. There is no known definite cause for autism.
  6. Usually autism is a lifelong condition. It is not outgrown.
  7. The families of teens diagnosed with autism need support.
  8. Choosing a school is critical.
  9. Unfounded myths about teens with autism abound.
  10. Autistic children and teens can be highly functional contributors to the world.

Jimenez fleshed out each of the facts in the article Autism in Teens: Top 10 Facts Parents Need to Know, which are summarized above.

Teens and Special Needs: What Facts Do You Want to Communicate?

Do you have a teen with autism or other special needs? What facts have you discovered? How have you learned to not pigeonhole your teens?  Leave a comment to encourage other parents raising teens and to inform young parents whose knees are knocking at the prospect of parenting teenagers.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities.

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Special Needs and Medically Complex Kids in the News

Special Needs and Medically Complex Kids in the News

Special Needs and Medically Complex Kids in the News

Medically complex kids can lead fulfilling lives. That’s one of the messages conveyed in a recent Morning Edition NPR article. It profiled Kara Doderer, a 15-year-old who lives with lupus and congenital central hypoventilation syndrome (CCHS). People living with CCHS require a mechanical ventilator to breathe. But that hasn’t kept Kara from being a straight-A student, a dancer, musical theater performer, and a harpist.

Special Needs and Health Care for Medically Complex Kids

The article conveys other messages, too. The high cost of medical care for medically complex special needs, for one. For another, the difficulty of navigating the medical/insurance systems in our country. And finally, the importance of parent who advocates effectively within those systems. That’s something Kara’s parents are equipped to do because Kara’s mother, Marcy Doderer, is the former CEO of the children’s hospital in San Antonio and now runs the children’s hospital in Little Rock, Arkansas. Even so, the Doderers say Katie’s care has been scattershot, and when they have to cross state lines for care, her Medicaid doesn’t follow her.

Special Needs Controversy about Medically Complex Kids

The article generated a wide range of comments about the article Kids with Costly Medical Issues Get Help, but Not Enough. It’s been cited at other sites, too, like the Lucile Packard Foundation for Children’s Health. Of course, many of the comments relate to the health care controversy raging in our country. Since one of the goals of this blog is to unite parents of kids with special needs, if you want to wade into the controversy check out the story at the NPR site and leave your comments there.

Special Needs Shout Outs

However, if you want to brag on your child with medically complex special needs, you are in the right place. Tell us about your child in the comment box below!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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How to Apply for SSI Benefits for Kids with Special Needs

How to Apply for SSI Benefits for Kids with Special Needs

How to Apply for SSI Benefits for Kids with Special Needs

Today’s guest post comes from Ram Meyyappan. Ram is the senior editor and manager of Social Security Disability Help, a website that contains information on how to apply for disability with over 400 disabling conditions.

How to Apply for Social Security Disability Benefits for Kids with Special Needs

When a family has a child with special needs, it can take a significant financial toll. In extreme cases, a parent may find that they need to leave the workforce in order to care for the needs of the child. In other cases, professional caretakers may need to be hired. In either situation, financial situations can quickly spiral out of control. Fortunately, in some cases, Social Security disability benefits may be able to help.

The SSI Program

Social Security Disability Insurance (SSI) is a needs-based program for low-income individuals and families. In order to qualify for SSI benefits, you must meet the program’s financial criteria. If the child lives with one parent, then the combined household income and assets must be under $2,000 in order to qualify. If the child lives with 2 parents, then the combined income and assets must be under $3,000 in order to qualify. For more information on qualifying for SSI and what is counted towards the income and assets calculation please visit How to Qualify for SSI Benefits.

Meeting the SSA’s Disabling Criteria

In addition to meeting the technical requirements of the SSI program, your child must be determined to be disabled by the SSA in order to qualify for benefits. The Social Security Administration (SSA) defines a child as disabled if the child is under the age of 18 and:

  • Is not working at a job that the SSA considers to be substantial work; and
  • Has a physical or mental condition or combination of both that result in marked and severe functional limitations that seriously limit his or her activities; and
  • The condition has lasted or is expected to last for 12 months or more or is expected to result in death.

In addition to meeting the above-mentioned criteria, the child will need to suffer from the condition that meets or equals a Social Security Blue Book listing. The Blue Book is a publication that lists all of the conditions that may qualify a child for Social Security Disability benefits along with the criteria that must be met to be approved under each condition. Some examples of conditions that are included in the Blue Book include:

  • ADHD
  • Autism
  • Down Syndrome
  • Cerebral Palsy
  • Intellectual disability
  • Growth impairment
  • Hearing loss
  • Vision loss
  • Childhood cancers

For a complete list of all childhood conditions that qualify for disability, please visit the Blue Book of childhood listings.

Applying for SSI Benefits for Your Child

You can apply for benefits online or in person at your local Social Security office. When you apply in person, you should bring medical evidence supporting that your child meets the criteria of a Blue Book listing in addition to bringing proof of household financial information such as paycheck stubs and bank statements. If you are applying online, you will be provided with a cover sheet that will allow you to fax this information in to the SSA. You will also be asked to attend a mandatory interview.

Questions and Comments Welcome

If you have comments about Ram’s advice, leave a comment below. You can also share SSI application success stories here. 

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To ask Ram questions, email him at ram@ssd-help.org.

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Special Needs Invitation: Come Touch His Cheek

Special Needs Invitation: Come Touch His Cheek

Special Needs Invitation: Come Touch His Cheek

Special needs are perceived differently by different people. Those who don’t know any children with special needs may see their conditions or perceived limitations as a burden. But many families who live with those who have special needs see their loved ones as a gift. Today, guest blogger Gary Shulman shares a poem he wrote to draw the two groups closer together. This poem comes with a tissue warning!

Come Touch His Cheek

This child of mine you stare at so,
Please come closer so you will know
Just who my child is and what I see
when those sweet eyes stare back at me
I see no limits to my child’s life
Although I know
It will be filled with strife,
I’m hoping that doors will open each day
I’m praying that kindness
will come his way
You look frightened?
You tremble with fear?
Come, come closer
touch him my dear
Touch his cheek so soft
so sweet
Be one of those people
he needs to meet
Someone who will look
and hopefully see
The skill, the talent
The ability
Please come closer
You don’t have to speak
Come a little closer
Just touch his cheek
And when you do
you will see
this sweet, sweet child
is no different
than you or me

Your Thoughts?

What do you think of Gary’s poem? What potential do you see shining in your child’s eyes? Leave a comment.

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Gary Shulman, MS. Ed. was the Program Director of Social Services, Training Coordinator, and Special Camp Fair Coordinator for Resources for Children with Special Needs, Inc. for over 24 years. He recently transitioned from that position to the role of consultant/trainer on a private basis. Gary’s passion is bringing relief to families of children with disabilities as well as to the professionals who support them. His workshops are informational and inspirational. Through an interactive format, participants are taken on a journey of discovery. They learn about programs and services that make life easier when caring for a child with a disability and are motivated to think about their needs, wants, wishes and dreams and to move to realize them.

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4 Ways to Help Kids with Special Needs Adjust to Change

4 Ways to Help Kids with Special Needs Adjust to Change

4 Ways to Help Kids with Special Needs Adjust to Change

Guest blogger Liz Matheis went through a season of change after the birth of her third child several months ago. The lessons she learned can be used to help kids with special needs adjust to the changes that accompany a new school year, too.

4 Ways to Help Kids with Special Needs Adjust to Change

Change, change, it’s the season for change! It’s the start of a new school year and another phase of change in the life of your child with special needs. As a parent, I am happy for this transition back to school, although I am sad to say good-bye to summer. I’m ready for the routine and structure that school brings, but for many children, transitions are difficult and frightening. Sometimes a transition such as the winter break around the holidays can be a time of peaking anxiety. For some children, even daily transitions are difficult to process and are faced with much resistance. So, how do you as a parent help your child with an upcoming change in routine, season, holiday, or travel?  Anticipate and plan ahead, which will lessen the severity of the change and make it easier to accept.

Keep it the Same… As It’s Becoming Different

When my new baby was born 9 months ago, I knew that the change in our family life was not going to be well received. In the months before, I created a routine for my children and I stuck to it as much as I could. After my son was born, our routine was already in progress and I didn’t want to stray from it. So, we kept the same rules, same bedtime, same rules about TV, and my husband and I had the same behavioral expectations for our two older children. I was very tempted to extend bedtime or to give them an extra dessert because I felt badly that I wasn’t spending as much time with them as I used to, but I knew that I shouldn’t and so I didn’t.

With that said, when you are expecting an impending change in your schedule, stick to your routine so that your child can rely on the familiar amidst the unfamiliar.  Making a change to your routine takes another element of your child’s life and makes it even rockier. Don’t feel badly and don’t offer too many exceptions to the rules or special treats to make up for a guilty conscience!

Head to the Library

That’s right, take out your library card and drive on over to the place filled with books about… yes, change! Children tend to relate better to characters in books that are going through a similar experience or having a similar emotional response. Find books about the upcoming change, whether it is traveling on a plan for the first time, a new sibling, or whatever. Ask questions while you read the book like these:

  • Has that ever happened to you before?
  • The character feels __________.
  • How do you think you would feel?

Let your child relate his experience to the character’s and process with your child through simple questions about her fears and worries. If your child is struggling to answer your open-ended question, provide two choices and let her choose one.

Keep it Positive

As you are staying open to your child’s fears and worries, make sure to talk about one or two things that are positive about the upcoming change and keep it tangible! For example, although a trip via plane to Florida is scary, once you are in Florida, you will be able to see palm trees. Or, a new sibling will make things different, but your child will have a new person to play with!

Count Down…or Not

For some children, you may want to take out a calendar and get a count down going. For some children, the countdown may create more anticipatory anxiety, so it is up to you and how you think your child will react to this. Having a countdown helps to quantify and make the time that feels so long before the change happens seem more under his control. Add stickers, draw smiley faces, or whatever else your child seems to like.

As humans, we are creatures of habit. Many of us thrive on routine and familiarity, and dread a change. When I worried within the public and private school system, it took me about 2 weeks to adjust to returning to work in September. I cried about it more than the kids. (They adjusted in 1 week, by the way!) When thinking about a child with special needs, change is especially scary because of the unknown. By using some of the strategies I discussed, it will help take the unknown about what’s about to be new in your child’s life.

How Do You Help Your Kids Adjust to Change?

What are your best tips to help kids adjust to change, at the start of school or any other time of year? Leave a comment in the box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

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Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

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