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Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Sometimes Funny is All We’ve Got

August 3, 2011 in Featured, From Julia by Julia Roberts

When our first child was diagnosed with  developmental delays we didn’t know what hit us. We’d gone from having a perfectly healthy 8 month only child to one that was in 7 therapy appointments and “at risk” as defined by the state’s early intervention program.

Those were not fun times. While we were still acting as a regular family, we were focusing on getting used to our new normal. Which turned out to be not very easy. It did happen eventually and we were happy again.

But we didn’t know what we didn’t know.

A little over a year later we were faced with our new baby’s diagnosis of a life-threatening kidney disease and 3 months later our son’s diagnosis came. It was not a happy time in our house. In fact, I clearly remember doing anything but laughing or having fun…for a very long time.

That was the year I refer to as “The Fog” and I remember it well. Back then, before I was blogging at Kidneys and Eyes to release some of the pain and hurt and experience, I would send out batch emails to close family and friends to give them updates. Those emails were excruciating to send because I didn’t want to sound too depressing, but honestly? Things were depressing around our house. We were still getting our special needs parents legs firmly planted on the ground. So while I was kind of pretending to be okay, things became okay. It was a “fake it til you make it” kind of thing.

During that time my beloved and I would test out our funny bone on each other. We’d say something totally inappropriate outside the walls of our brick ranch home and slowly but surely we started to believe. We started to believe in humor again. It didn’t happen all at once; it slowly crept back into our lives.

Over the years as we cried about the progressing symptoms of kidney failure, developmental delays and bad reports all around us, we learned that we could laugh. I remember the night when I got a call on my cellphone telling me it was time to get our son in to talk about a kidney transplant; his lab numbers had taken a turn for the worse and stayed there. When I got home my husband took one look at me and he knew something was wrong.

The kids were eating dinner at the kitchen counter and while I was crying they were screaming for milk (or goldfish or yogurt) and we were both trying to hid our tears. I am fairly certain I sighed heavily and rolled my eyes because the kids have the audacity to ask for more to eat or drink and I said something like, “Ugh! We can’t even talk for one minute about dialysis and kidney failure!” My husband looked up at me and said, “What, don’t you think mortality and milk mix well?”

I agree, it’s not THAT funny, but it did come at a good time. We talked about how life just keeps moving on; the kids still have to eat. So, we just moved on through two kidney transplants (mixed in with dialysis, depression, mental health issues and trauma) and here we are, trying to get ready for the next crisis (which we know will always come).

Sometimes we make fun of our life and our kids to left off steam. Sometimes it’s because we need a laugh. Sometimes it is because some of the things they do because of their disabilities are really funny. Sometimes it is because if we didn’t we would cry.

I like to make fun of what we say and I chronicle it on my blog by titling certain posts with “Spoken in the Mutant Family Household” because it’s my way of embracing our inner (inappropriate) funniness (Sometimes about the kids! And their disease!) and our outward mutantness.

There’s hardly a better way to live this life than to laugh at it and that includes laughing with (and at) my mutant children. I have to admit some days it is the only way we can live this life.

Does humor get your through the day sometimes?

Assessments In the Driver’s Seat

November 3, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

The most important thing to remember about assessments is that they not only determine eligibility — they also drive placement and services.

A good and appropriate initial assessment can be used by the IEP team to determine whether a child is eligible for special education. My prior articles have described the requirements for eligibility, in short: a qualifying disability and a showing that the disability interferes with a student’s ability to access his or her education. However, that initial assessment will also set the stage for the placement and services offered by the district. While the eligibility category (such as autism, specific learning disability, or a speech/language impairment) will signal the main interventions to be provided, an IEP should include services necessary to address all of your child’s areas of need.

For example, if a child is eligible for special education as a student with Other Health Impairment because of a diagnosis of ADHD, he should receive services designed specifically to address the challenges arising from attention deficit. However, it is possible that in the scope of the assessment, the evaluator also identifies some problems with social/emotional functioning, such as withdrawal, anxiety or depression. These issues should be addressed as well, usually by an initial offer of school-based counseling, or a social skills groups for students.

When Assessments Steer You Wrong

Clearly, when an assessment is used to conclude that a child is not eligible for special education or not eligible under a certain category that you may be seeking, this can be a frustrating setback in your advocacy efforts. However, the worst assessments are the ones that provide absolutely no useful information about a child. Even if you disagree with a particular recommendation or conclusion that the district may have drawn from an assessment, the data itself can still be very helpful in understanding your child’s educational strengths and deficits.

Some of the more common issues that that arise with assessments are when the district fails to use an appropriate testing instrument, fails to properly score a test, or fails to administer or conduct any testing in an area that is a known issue with the child. To expand upon the example above with the child who suffers from ADHD, if that child’s teachers have noted troubling behaviors in the classroom that they believe could be emotionally-based, or if his parents are raising concerns about his mental health status, this would be considered an additional area of suspected disability. When his triennial re-evaluation rolls around, the district should absolutely include some kind of assessment to address these concerns.

Federal law sets forth several requirements for evaluations, including that they be conducted at least every three years, but not more than once per year unless agreed upon by the IEP team. A full assessment should include a variety of testing instruments and tools, so as not to rely on a single measurement of a child’s ability. In addition, standardized tests should be administered in accordance with the publisher’s instructions by knowledgeable and qualified personnel, should be given in the language of the student and should not be racially or culturally discriminatory. One key requirement is that the child must be assessed in all areas of suspected disability.

Getting Back on Track

A major part of my practice involves helping parents navigate a situation in which their child has not been appropriately assessed. The law allows parents to obtain an independent educational evaluation (IEE) at public expense when they disagree with a district assessment. A key point to note: there generally must be an assessment with which to disagree. While there are exceptions to every rule, if the district simply fails to assess and you take them to court, they will likely be given an opportunity to conduct an evaluation before having to pay for a private one.

If you request an independent educational evaluation, federal regulations provide the district with two choices: they can either agree to your request or they can file for due process to establish that their assessment was appropriate. In most cases, the district will determine that it is more cost-effective to pay for an independent assessment than to incur the expense of a due process hearing against the parents. However, it is important to know that the district may file for due process in response to a request for an IEE.

Many times, a district will deny the parents the requested IEE, but fail to bring due process. In this situation, parents often seek out a private assessment themselves and then request that the district reimburse them. They may have to file for due process against the district in order to obtain this reimbursement.

If the district agrees to fund an IEE, parents should be given the opportunity to negotiate with them regarding the independent professional who will conduct the evaluation. It is important to go with an assessor who is truly independent of both the parents and the district so that all sides feel they are getting an objective opinion. Ask other parents in your community for references in order to identify the good assessors in your area.

Once an independent assessment has been conducted, the district should convene an IEP meeting to consider the results of that assessment. If the independent assessor draws different conclusions than the district, this may strengthen the parents’ argument for a particular category of eligibility, a particular placement or additional or different services. Parents may use the independent assessment in a due process hearing against the district to establish that the district’s assessment was inappropriate or that the child has been denied services because of the district’s failure to identify his or her needs.

While trying to obtain an appropriate assessment of your child can be a frustrating experience, the law has built in a mechanism for a second opinion, which in most cases I recommend pursuing. Having more information about the student’s strengths and deficits leads to better team decision-making, better educational planning and better outcomes for the child.

Parents face tough choices when child struggles with depression

October 11, 2010 in Special Needs News by Admin Dawn

One of the most difficult things for parents of teenagers who are thinking about hurting themselves to face is that sometimes right before a troubled teen tries to take his life, he or she might seem to be getting better.

“For teens in particular, a sudden cheerfulness after a period of depression may be a threat that they’re going to take their life,” Debbie Helms, program director for the Samaritans of Merrimack Valley, said. “There’s an energy and period of clear thinking because they’ve already made the decision to kill themselves.”

Yvonne Vissing, associate professor of sociology at Salem State University and director of the university’s Center for Child Studies, said that’s one of the aspects of teen suicide that’s particularly confusing — and troubling — for families.

“One thing is when people are very depressed that’s not usually when an attempt will happen,” Vissing said. “It’s usually when a person is feeling better.”

Read more here: Parents face tough choices when child seems in trouble.

Can Preschoolers Be Depressed? – NYTimes.com

August 26, 2010 in Special Needs News by Admin Dawn

Kiran didn’t seem like the type of kid parents should worry about. “He was the easy one,” his father, Raghu, a physician, says. “He always wanted to please.” Unlike other children in his suburban St. Louis preschool, Kiran (a nickname his parents asked me to use to protect his identity) rarely disobeyed or acted out. If he dawdled or didn’t listen, Raghu (also a nickname) had only to count to five before Kiran hastened to tie his shoes or put the toys away. He was kind to other children; if a classmate cried, Kiran immediately approached. “Our little empath!” his parents proudly called him.

But there were worrisome signs. For one thing, unlike your typical joyful and carefree 4-year-old, Kiran didn’t have a lot of fun. “He wasn’t running around, bouncing about, battling to get to the top of the slide like other kids,” Raghu notes. Kiran’s mother, Elizabeth (her middle name), an engineer, recalls constant refrains of “Nothing is fun; I’m bored.” When Raghu and Elizabeth reminded a downbeat Kiran of their coming trip to Disney World, Kiran responded: “Mickey lies. Dreams don’t come true.”

via Can Preschoolers Be Depressed? – NYTimes.com.

This is a long read but totally worth it if you’re interested in childhood mental illness.

Sensory Implications for Bi-Polar Disorder

June 10, 2010 in Insider Insight, Latest Articles by Susan N. Schriber Orloff, OTR/L

While Autism is very much in the current spotlight, the rate of children being diagnosed with Bi-Polar Disorder is even higher.

According to the National Institute of Mental Health over 1.5 million children under the age of 15 are severely depressed. And one major study (Child and Adolescent Bipolar Foundation) states that nearly half of those children who exhibit depression before puberty will be diagnosed with Bi-Polar Disorder before they are 20 years of age. Another study projects that there are at least 1 million children who are suffering with this condition who are “uncounted”. Symptoms can emerge at any time in the life cycle, cases have even been diagnosed in preschoolers.

Unfortunately, according to Dr. Terrence Ketter, director of the bipolar disorder clinic at Stanford University, “at least half of the people that have this disorder do not get treated”. Getting it treated early on is essential. Dr. Demitri Papolos, research director of the Juvenile Bipolar foundation says that the disorder grows “like a tumor” and that heaping the torment of this disorder on an adult is “bad enough, but loading it on a child it is tragic”.

The cause of the rise in the diagnosis of this disorder appears to be related to stresses in school and at home. The Centers for Disease Control note a 20% increase in (presumed bi-polar-related) suicides in children over the past ten years.

A child with one bipolar parent has a 10%-30% chance of becoming bipolar, and if both parents are bipolar the odds reach 75%. In the general population, 90% of all those diagnosed with bipolar disorder have at least one close relative with a mood disorder.

Treatment in the past has often been by trial and error. Protocols include drug regimens, lifestyle changes, individual and family therapy. Occupational therapists can play a major role in helping families with the necessary lifestyle changes as well as helping the child develop behaviors that allow them to gain some measure of self-control. OT’s can also help with parenting techniques and helping families develop routines that can help the bipolar child relate more successfully with unaffected siblings.

Learning to balance sleep, meals, play as well as school demands is extremely important for not only these children but also the whole family. The child can be taught to seek out their siblings and to use them as a sounding board, “trusted eyes and ears” for when their perceptions become distorted.

Often these children are also diagnosed with ADHD, and the very nature of the affects of bipolar disorder creates sensory distortions and unstable sensory processing abilities.
With the above in mind the occupational therapist can help provide assistance by:

  1. Helping to create fixed family schedules for bedtime, wake-up times, meals, etc., as well as helping families understand that “drug holidays” are both dangerous to the child as well negatively impacting therapy progress.
  2. Providing avenues for families to discuss, on a regular basis, problems within the home and at school to help resolve issues before they reach the crisis stage.
  3. Helping the family to find ways to reduce family and inter-sibling/parent bickering.
  4. Education for the family about the behaviors associated with the disorder.
  5. Participating with the psychologist in family therapy meetings.
  6. Increasing transitional tolerance when unexpected changes in routines occur by role-playing and other techniques.
  7. Providing evidence of successful completion of specific task demand situations and activities. (ADL’s, etc.)
  8. Provide routines that promote self-monitoring, behavior training, and daily structure that helps the child organize and monitor their behavioral reactions.
  9. Increasing gross and sensory motor proficiency in novel (supported) situations (such as the S.H.I.N.E. Sensory Program © (Socialization, Hiking, Integrative, Neuro-muscular Experience© part of Children’s Special Services, LLC)
  10. Supporting the parents and helping them understand that they can be active participants in the therapy programs, but most of all, as one parent put it, “..at least now I know I am not a bad mother”.
  11. Administer assessments that can realistically help set goals for self-care and community and academic situations.
  12. Increase self-esteem through relaxation and other techniques that reduce feelings of helplessness and inadequacy. These can include but are not be limited to:
  • •  breathing techniques
  • •  visualizations
  • •  journaling about moods; thoughts, ideas and feelings
  • •  utilizing structured and unstructured activities such as crafts, cooking, music, and drawing, to express moods constructively.
  • •  preventing further impairment through or loss of function through related activity based interventions.

While recent pharmacological advances have greatly increased the management of this disorder, OT’s working as a team member in conjunction with the physician can greatly contribute, by providing tangible task/activity/function-based successes, creating hope for the possibility of a normal life.

Susan N. Schriber Orloff, OTR/L, is the author of the book Learning RE-Enabled, a guide for parents, teachers, and therapists (and a National Education Association featured book), and the Handwriting on the Wall Program. Children’s Special Services, LLC is the exclusive provider of P.O.P.tm Personal Options and Preferences, tm social skills programs. She was the 2006 Georgia OT of the Year and the CEO/executive director of Children’s Special Services, LLC, which provides occupational therapy services for children with developmental and learning delays in Atlanta. She can be reached through her Web site at www.childrens-services.com or at sorloffotr@aol.com.

The Shirt Less Chewed Giveaway

May 31, 2010 in Giveaways by Julia Roberts

Chewelry styles for big kids, otoAt the beginning of the school year my son was under an enormous amount of stress. He was under the care of doctors for depression and while he was doing slightly better – the depression was lifting – he was no where near where he deserved to be emotionally. A month into school when more was expected of him he started to chew his clothes. Honestly, it caught us off guard and we tried everything to reduce his stress levels.

His anxiety was very high and there wasn’t anything we were doing that was helping ease the anxiety. His anxiety also made him want to stay covered and he wore a jacket except when he slept. He chewed on the sleeves of his jacket(s) mostly, but also collars and sleeves of shirts. Long sleeves were his favorites. We did have a bit of success at with providing him washcloths and towels but they didn’t last either. He’d chew them and pull them apart and leave the remnants of his anxiety all around the house.

A chewy? Chewies? Their URL is Chewelry. I know, that’s clever, right? Such a perfect name for the line of chew necklaces – jewelry.

Back then I wish I had known about these chewies. Not the pink ones for him! But he would have gone for any of the cool “boy” colors. I would have ordered a few of them, just to save on clothing replacement costs.

Pierrette and Lorna, the good people at Kid Companions offered up two of them for us, a Blue Circle and Pink Heart. Luckily with proper mental health treatment, my boy’s anxiety is all but gone so he doesn’t need one anymore. But if you have child who chews why not leave a comment that you’d like one of these! Giveaway period ends Friday, June 5, at 5PST and remember, you must be registered at our site to win!

Here’s what their sites says about the particulars; what they are made of and about the special clasps that break away and why they made them in the first place.

Note from Dawn: I wish I’d known about these back when Madison was chewing her t-shirt collars to shreds!

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