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"Celebrating Exceptional
Families"
2011 Retreat Summaries
October 14-15
Holiday Inn Alexandria, MN
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The Windmill Project Midwest Area
Newsletter
February - 2003
Parents -- Their Child's Home
Information Specialist
It is common to hear parents talk about feeling intimidated
by all of the professionals who participate in planning meetings for their
child. I know I have felt that way on more than one occasion. It really
helped to boost my confidence when I realized that I actually have important
information about my son.
I know
things that others do not. I am aware of the ways he responds to people who come
into our home. Although his multiple disabilities have profound impacts on him
physically and mentally, it is heart-warming to watch him respond to friends and
family members who speak “his language.” That’s why a sign in his room reads,
Love Spoken Here.
His dad
and I also know that he often gets upset when our discussions turn into
arguments. We refer to this as his “emotional radar.” It really kicks in
whenever someone new begins working as his care provider. He makes sure they
have what it takes to do the job successfully.
As his
parents, we are more aware of how he is affected by his surroundings. We
recognize his intolerance for certain noise levels --frequency and/or volume.
We also see how lighting affects his comfort, especially if it is florescent,
flashing or shining directly into his eyes. We know that his body can be warm
on one side and cold on the other, and how quickly he can overheat, becoming wet
with sweat and clammy to the touch.
You are
also a specialist who has unique understanding about your child! In addition to
your observations, you have instinctive insights because of the parent-child
bond you share. Even if your child has completely different challenges from
mine, your special knowledge can be extremely valuable whenever you meet with a
teacher, doctor, therapist or a team of professionals.
If you want a title, call yourself a Home Information Specialist.
I have seen parents carry totes printed with that designation at conferences and
to parent or team meetings.
Always
remember, you are an expert on your child!!!
Some food for thought:
- IDEA, the
Individuals with Disabilities Education Act, made it possible for all
children with disabilities to attend school. The law told public schools
that they needed to provide a free, appropriate, public education (FAPE). It
is known as an entitlement program.
- When it comes to
adult services, programs have various eligibility requirements. In some
cases, people who are eligible are placed on waiting lists since there is no
law requiring services for adults with disabilities.
- Every parent of a
child receiving special education services needs to know about the
difference between eligibility and entitlement. Then they will study and
learn what it will mean for the future of that adult child.
Childhood and Adolescent
Depression
Depression in children and teens was one topic at a conference
last November. The workshop was presented by Dr. L. Read Sulik, Medical Director
of Child and Adolescent Psychiatry at St. Cloud Hospital. Many children and
adolescents are referred to him because of behavior problems. When they are
described as “mad all the time,” by others or themselves, he suspects depression
until proven otherwise.
Mood changes are expected in the teen years. But when teens experience extreme
sadness, irritability or mood swings, depression may be the cause. Dr. Sulik
describes them as “living without joy.” Their mood changes, they lose interest,
withdraw socially, become more isolated and experience boredom.
Sleep difficulty and fatigue are physical symptoms he sees in teens with
depression. They may have trouble getting to sleep or awakening during the night
or early morning. Sleep deprivation can lead them to appear “spacey.” And it is
not unusual for them to be fidgety from fighting off fatigue. This may also
contribute to their craving for carbohydrates.
Distorted thinking affects them, and they may worry even though they do not
realize it. Difficulty concentrating, decreased attention and focus, increased
distractibility or daydreaming may also be seen. Some may be troubled by morbid
or suicidal thoughts.
Dr. Sulik’s approach to depression involves treating it and managing it.
Treatment may include medication, therapy (individual, group, family), and/or
hospitalization. Therapy aims to: improve the teen’s self-awareness; develop
self control; learn relaxation skills; recognize signs of depression; and be
able to live a healthy lifestyle.
Education is used to reduce or eliminate fears, and teens become “experts” on
depression. (Educating families of depressed children has similar benefits.)
Education leads to greater understanding of depression and is the basis for
learning how to manage it. Managing depression includes a set of healthy
lifestyle choices and family support and respite if needed.
A list with symptoms of depression in infants and toddlers, preschoolers,
school-aged children, and adolescents are available on request. Send a stamped
self-addressed envelope to Windmill Project, 128 W. Junius Ave., Fergus Falls,
MN 56537. Or contact windmill_mgr@hotmail.com if you are able to receive e-mail
attachments in Microsoft Word.
Promoting Mentally & Emotionally Healthy Teens
A Research Brief, written and distributed by Child Trends
reviewed nearly 300 research studies on teens’ mental health and emotional
well-being. They looked at programs and approaches that had been evaluated
experimentally to identify “what works.” They also reported on “best bets” that
need further study to verify their value. They considered two categories of
mental health disorders:
-
Internalizing disorders like depression, anxiety and eating disorders,
reflecting a troubled emotional state within the person and
-
Externalizing disorders such as conduct disorder, attention-deficit
hyperactivity (ADHD) and alcohol and drug abuse that are expressed more
openly.
If you want to read
about their findings, visit their website, www.childtrends.org. If you do not
have a computer, ask your public librarian to locate and print off the Research
Brief. Or you can request the information from the Windmill Project.
Healthy lifestyle includes:
nutritious diet, adequate sleep, exercise, relaxation, proper use of meds,
follow through with therapy, chemically free, support system in place, play or
have fun, and spiritual dimension.
Derek’s Miracle Is Having Fun
Speech, physical and/or occupational therapy, doctor’s visits,
surgeries--not much fun for the children who need them. And when activities like
youth soccer, t-ball, bike riding or roller-blading are impossible, parents want
to find a FUN activity for their children to do. Well, what about horse riding
for a boy who spends most of his time in a wheelchair?
Derek has Cerebral Palsy with very low muscle tone. He can’t sit or stand by
himself so he depends a lot on his wheelchair. His doctor, Paul Bergstrand,
mentioned a therapeutic riding program to his parents. Sharon Bridges, a
physical therapist at the Osakis public school where Derek goes, told his mom
that she thought Derek might benefit from riding. Sharon is actively involved
with Miracle Horse Riders, Inc. In addition to serving on its Board, she
evaluates new riders to make sure they can participate safely.
Janel (Derek’s mom) met and talked with a representative of MHRI. She viewed
parts of their video and visited with another mom whose child was riding. She
left that day with an application and physician’s permission form. When he
started riding, Janel said “he couldn’t hold his head up; he was like a limp
noodle.”
Derek has been riding once a week, weather permitting, for three years. He is
stronger, has better head control and is more coordinated. Equally, or even more
important, is how much Derek enjoys the time he spends riding. He shows his
excitement by babbling and kicking his feet when the car turns toward the arena.
It is the special thing he does that his siblings don’t get to do. His parents
gladly pay the $15 each week and pray that someday MHRI will have a
climate-controlled arena so Derek and others can ride all year long. Janel wants
other parents to know, “This has been the best thing for us to do.”
Riders from 3 to 89 years old have participated. Those with physical injuries,
like a badly broken leg, as well as a wide range of disabilities have benefited.
Some have Cerebral Palsy, like Derek; others have autism or generalized
developmental disabilities. It has also been effective for some children with
severe emotional or behavioral disorders.
Candy Esterberg and Alice Christianson began Miracle Horse Riders, Inc. four
years ago. They have worked tirelessly to begin and continue to improve the
program. They have made it available to as many people as possible by keeping
the cost to riders so reasonable. It is a labor of love that depends on many
hours donated by dedicated volunteers.
• MHRI has used
arenas near Miltona and Carlos in Douglas County and recently began riding
near Urbank in southeast Otter Tail County. For specific details call Candy
(218-267-5216) or Alice (218-943-4514).
• Seventeen programs in Minnesota are listed at www.narha.org along with one
in Fargo.
• If a child receives county social services, it may be possible to have
riding written into the annual plan. Discuss it with your child’s
case manager.
Transition from School to Adulthood
TATRA is a project of PACER Center that focuses on transition from school to
adult services. In a needs assessment survey they found that families are
concerned about:
- the lack of
resources, programs and opportunities for students after they graduate
from high school;
- supports for
employment, post-secondary education and residential alternatives;
- the lack of
coordinated, individualized, and futures-oriented planning and services;
and
- the lack of
opportunities for students to participate in challenging career
development or to experience a variety of occupations.
Concern for the lack of
resources continues to increase as the Minnesota State Legislature and Governor
Pawlenty struggle to balance state budgets. Funding problems will certainly make
it more challenging as families and professionals work to meet the needs of
special education students. It will affect services for all students and their
families, especially those who will graduate during tough economic times.
Planning ahead becomes even more important since waiting lists may get longer
for waivers to help cover costs of adult services. Correct information and
working knowledge about service systems are always important for families, but
the stakes are even greater for families of students who will soon leave public
school services behind.
Several workshops at Windmill’s 2003 Parent Retreat/Conference will give parents
relevant transition information like:
- wills and
special needs trusts;
- the school’s
role in transition planning;
- how
Rehabilitation Services may be used and by whom;
- and programs of
the Social Security Administration.
Besides the workshops,
representatives of various adult service programs and agencies will be in the
Resource Area on Saturday. There will also be opportunities to talk and
brainstorm with other parents who are facing similar challenges. Coming up with
creative ideas make help in overcoming “potholes and roadblocks” along the way.
A handbook to help families with these concerns will soon be completed.
Transition Planning—Family Style is made possible by a federally funded grant
from the MN. Department of Children, Families & Learning, Division of Special
Education.
Questions for Parents so Young Children Will Learn
Independence:
1. What choices do I let my child make?
2. What things do I do for my child that he/she could be learning to do for
him/herself?
3. What opportunities do I provide for my child to try new things?
4. What does my child learn from me about coping with, and learning from, my
mistakes?
5. How can I learn to let my child take reasonable risks so he/she can become
more responsible?
6. What daily living skills am I teaching my child?
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