I’m very excited to be guest posting over at BLOOM blog, the blog for Holland Bloorview Kids Rehabilitation Hospital. I am truly honoured by this opportunity.
Thank you Louise Kinross, parent, editor and special needs super-star!
Please go check them out, there are amazing things happening at BLOOM!
My post, Hitting the Jackpot, is about coming to terms with a special needs diagnosis for my children, something most parents can relate to. Go on, check it out!
Excerpt:
In the land of special needs, things happen differently, and if you don’t look for them you will miss them completely. My daughter is nearly three now and still cannot walk. She spends her day bum-shuffling around, a devoted mother to a dozen baby dolls, giving them bottles and naps and changing diapers. If her baby brother holds still long enough she will change him too.
If I spent my time focussing on what she can’t do, I would miss everything that is truly exceptional about her. She does not speak clearly, but can tell knock-knock jokes. And she loves to laugh. She can’t walk, but can dance. She moves with a rhythm and style all her own. She has a strong sense of fashion, and loves stylish clothing and accessories. She makes people happy, reaching out to strangers and truly bringing out the best in people.
There is no percentile chart that can measure this. It took us a while to realize that the things that truly count cannot be measured.
In that sense, I think we already hit the jackpot.
What’s my advice to parents dealing with a new diagnosis?
Hug your child, spend time with them and remember how special they are. Make time to connect with other parents who are going through the same thing or who are just slightly ahead of you on the journey in the land of special needs. With the Internet, the world is truly a small place. You are never alone. You can always connect with me on Twitter@specialneedmom2.
Angela is a special education teacher and special needs parent who blogs at Half past normal.
Read Angela’s complete blog post at Hitting the Jackpot over at BLOOM.
September 12, 2012
About Angela
Super-powered, Special Ed teacher and special needs mama to three children under five (!) Toddler has Prader-Willi Syndrome and Kindergartener has Duchenne MD. Hubby has ADHD. Baby #3 does not have super-powers, not that we love him any less for it. I blog about our halfpastnormal life.
Thanks Angela for sharing.
Additional PWS info.:
MedlinePlus – National Institute of Health – Prader-Willi Syndrome
Prader-Willi Syndrome (PWS) is an uncommon genetic disorder. It causes poor muscle tone, low levels of sex hormones and a constant feeling of hunger. The part of the brain that controls feelings of fullness or hunger does not work properly in people with PWS. They overeat, leading to obesity.
Babies with PWS are usually floppy, with poor muscle tone, and have trouble sucking. Boys may have undescended testicles. Later, other signs appear. These include
- Short stature
- Poor motor skills
- Weight gain
- Underdeveloped sex organs
- Mild mental retardation and learning disabilities
There is no cure for PWS. Growth hormone and exercise can help build muscle mass and control weight.
NIH: National Institute of Child Health and Human Development
Prader-Willi syndrome is a congenital (present from birth) disease. It affects many parts of the body. People with this condition are obese, have reduced muscle tone and mental ability, and have sex glands that produce little or no hormones.
Causes, incidence, and risk factors
Prader-Willi syndrome is caused by a gene missing on part of chromosome 15. Normally, your parents each pass down a copy of this chromosome. Most patients with Prader-Willi syndrome are missing the genetic material on part of the father’s chromosome. The rest of patients with this condition often have two copies of the mother’s chromosome 15.
The genetic changes occur randomly. Patients usually do not have a family history of the condition.
Symptoms
Signs of Prader-Willi syndrome may be seen at birth.
- Newborns are often small and floppy.
- Male infants may have undescended testicles.
Other symptoms may include:
- Trouble eating as an infant, with poor weight gain
- Almond-shaped eyes
- Delayed motor development
- Narrow bifrontal skull
- Rapid weight gain
- Short stature
- Slow mental development
- Very small hands and feet in comparison to the child’s body
Children have an intense craving for food and will do almost anything to get it. This can result in uncontrollable weight gain and morbid obesity. Morbid obesity may lead to type 2 diabetes, high blood pressure, and joint and lung problems.
Signs and tests
Genetic testing is available to test children for Prader-Willi syndrome.
As the child grows older, laboratory tests may show signs of morbid obesity, such as:
- Abnormal glucose tolerance
- Above normal level of the hormone insulin in the blood
- Decreased level of oxygen in the blood
- Failure to respond to luteinizing hormone releasing factor
There may also be signs of right-sided heart failure and knee and hip problems.
Support Groups
For additional resources and support, see:
- Prader-Willi Alliance — www.prader-willi.org
- Prader-Willi Syndrome Association — www.pwsausa.org
Expectations (prognosis)
The child will need the right education for his or her IQ level. The child will also need speech, physical, and occupational therapy as early as possible. Controlling weight will allow for a much more comfortable and healthy life.
Complications
- Type 2 diabetes
- Right-sided heart failure
- Bone (orthopedic) problems
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