Share Halloween photos of your 1p36 child for the 1p36
DSA Fall Newsletter!
We can’t wait
to see what great costumes our 1p36 kids are parading around in this October!
Halloween is around the corner and planning for a child with
special needs to participate in all the fun can be challenging. 1p36 Deletion Syndrome parents are used to
getting creative about a lot of things including costumes and trick-or-treating. Here are some thoughts and ideas to help.
Costumes
A little creativity and forethought can help with costume
planning. For my 9 year old daughter
with 1p36 Deletion Syndrome, I have a lot to think about for a costume. It needs to be one that she will be
comfortable in and that will allow for diaper changes and g-tube access. She won’t stand for a hat staying on longer
than 30 seconds and she won’t keep her hands away from face make-up. So these are things we avoid. Because she is in a wheelchair, the costume
has to be one that she can stay in while seated and that doesn’t interfere with
the chair’s belts and straps.
Other costume considerations for a special needs child might
be
·
avoid accessories that could be a choking hazard,
·
consider visibility both for the child to see
out easily and for others to see him or her on a dark street,
·
try to make it easy to get on and off for
you and your child.
·
If you child has sensory issues, think of a
costume that uses the child’s clothing.
Check out these websites for
costume ideas:
http://bit.ly/rq5TBr
- Ideas for children with sensory issues. If you see an idea that interests you, click
on ‘view this resource’.
Trick-or-Treating
We have never gone trick-or-treating in our neighborhood. It’s too difficult to imagine getting my
daughter’s wheelchair up the steps of every house on the block. I would be exhausted by the end of the night. Don’t get me wrong, if my daughter wanted to
do it, I would ignore my aching back and muscle through! Luckily there are other options for Halloween
fun such as church functions,
trunk-or-treat
community events and merchants both downtown and at the local malls that
entertain trick-or-treaters on Halloween night.
Do an internet search or look through the local paper to find events in
your area.
Some children (including mine) can easily be over-stimulated
so plan ahead and bring things that can help your child feel comfortable.
Have fun and enjoy your Halloween. We look forward to seeing your pictures!
When Mollie was born, she was just as God had intended her to be…. She was perfect. Ten fingers, ten toes and a head full of red hair. When she was two weeks old, her pediatrician noticed a heart murmur and sent her to see a cardiologist, the first of many specialists to care for her. Mollie had a heart defect, and as the weeks went by, her development seemed slow. It was assumed that she was slow to develop because of her heart condition. Mollie had heart surgery at only four months old and we all thought we would go on with our lives and the only remaining effects would be a scar for Mollie to show off. -2.jpg)
This past Sunday I walked through a local park and was unknowingly in the middle of a March for Down's Syndrome event. I was in a throng of 5,000 people. As I walked alone through this crowd, I held back the tears realizing just how lucky and blessed these families were to have a sea of 5,000 surrounding them--5,000 right in my local area who understood each other, the struggles, the joys, the pains and I longed to see the day when there, too, could be a sea of 5,000 surrounding me as we stood united with our children with 1p36 deletion. This will only happen if we spread the word--much like the early pioneers of those with Down's Syndrome had to spread the word on their chromosome disorder and band together, we, too, are the early pioneers of 1p36 deletion.
It was over-whelming to actually have a diagnosis, and very scary to start reading all the research. I am so thankful to now have the support of people all over the world through our yahoo support group and many facebook friends. Sarah has epilepsy, scoliosis, syringomyelia, eosinophilic esophagitis, feeding problems, sleep problems, and a few other minor issues! I have learned so much from this precious child, and she has shown the world her fighting spirit after spending four weeks on a ventilator this spring. It is not an easy life that we live, but I wouldn't trade either of my girls for the world!
We were seen by specialist after specialist to see how this syndrome was affecting our daughter. She suffered from horrible reflux for the first three years of her life. She had horrible sleep patterns. I honestly think she slept through the night twice the first three years. She has suffered from severe constipation and gastrointestinal problems. She was diagnosed with moderate hearing loss and had to wear hearing aids for about a year. If we fast forward to now Lauren is doing amazing. She just turned 5. She started walking almost a year ago, Although she doesn’t say much she gets her point across very well. She is seen by her cardiologist yearly to monitor her heart defect. As far as her hearing goes she does not wear hearing aids anymore. Her audiologist said the her hearing basically fixed itself and is almost completely normal. Her pediatrician is amazing and put her on a special sleep medicine and she sleeps like a champ now. We still battle her constipation constantly. The newest daily battle we are dealing with is behavior. She has been pinching not only us but her teachers, classmates and friends. Not sure what we are to do there but we will figure it out I suppose. Lauren receives occupational, physical and speech therapy weekly.
