Day: November 12, 2012

Guest Blogger: Children with Special Needs and Their Moms

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When I decided to do NaNoWriMo I asked my friends if any of them would be interested in guest blogging so that I could focus on my book.  I was surprised by the response I got and below is the first guest entry.  It is by my friend Nancy who has a special needs son.  I had asked her a few weeks ago what was the best way to help a family with a special needs son in my ward.  I didn’t want to come across as patronizing or rude but instead helpful and loving.

Nancy gave me some good advice and I suggested she summarize her thoughts for this blog.  I hope it starts a discussion and helps make us all better.  Perhaps if church is not a part of your life you can apply the same suggestions to other situations where you interact with special needs families, making our world a tiny bit better and more Christlike.

Children with Special Needs and Their Moms

My name is Nancy and I am guest posting for Rachel this month. I have had a hard time blogging on my own blog but feel honored to post for her. Rachel and I served a mission in the same mission. I left as she came. My mission prepared me with a few things that would and have helped me in my life. However, it didn’t prepare me for what was fully in store.

In 2005 we found out we were expecting our first child. I was attending the University of Utah and had already applied and started school. We were very newly married and thought we had the whole world figured out. We had planned that I would finish my semester at school and be on my last final and would go and be induced the next day. Our official due date was December 25.

The last week in August we found out we were having a boy. We were very excited and scared and the reality that we were having a baby was setting in. September brought chaos.  Tyler decided to arrive 15 weeks early and was born September 21st weighing 1 lb. 11 oz.

our full story can be found on my blog.

Tyler is now 7. He has several diagnoses and is disabled. He has cerebral palsy, hydrocephalus and is legally blind. Tyler is not in a wheel chair but has very obvious disabilities. He is much delayed and doesn’t act 7, but ranges in abilities from about 2-7. Some days are challenging.

One of the hardest things to do is to go to church with Tyler. In Nursery he had a walker so he was not allowed to go in with his walker because it was a hazard to the other kids, and it really pushed us away for a while. It was easier to not go. As he was older, we have gone back and been active, and inactive, depending on the season. Seems weird to some, but we do what we have to sometimes.

Here are some things that might help others understand disabilities and church and how to approach a mom/dad with special needs and a few big things NOT to say!

So here are some don’ts:

  • Do NOT attend church if you are sick.  If you have been around people who are sick, have had a fever, or just don’t feel well. Kids with special needs tend to have a compromised immune system. Places like church are a breeding ground for sickness. A cold to you is a life threatening illness to them.
  • Don’t tell the parents that it is a “blessing to have a child like that.” Because the truth is, it’s very hard and most people go through a period where they don’t feel it is a blessing. It can also be a source of anger towards Heavenly Father.
  • Don’t be afraid to wonder what is wrong with their child and especially don’t be afraid to ask. Better ask than stare.

For the do’s: (Because there are more positives that you CAN do than not!)

  • Ask AND MEAN what can I do to help? Having a kiddo with special needs is HARD stuff and moms with those kinds of kiddos are tough as nails and don’t have time to sift through the fluff of who is just saying it and who isn’t.
  • Don’t be afraid to ask what their diagnosis is, what it means and offer something to help during church. I haven’t sat through a church service in 7 years. Ty gets overwhelmed. It would be nice to have someone offer to sit out in the foyer for part of sacrament, so I can listen every once in a while.
  • Understand that we are trying to keep our kids quiet and when you see a seven year old playing fetch with his brother in church it isn’t what we WANT them to do, but what we have him do so we can go to church.
  • When they don’t whisper, understand it is ok. Heavenly Father doesn’t’ really care if they are quiet or not. And then, reach up and ask if it is ok if you take him for a walk. Moms are so embarrassed by the loudness of their child, but a quick walk outside is refreshing. We would do it ourselves, but having someone offer gives everyone more blessings. Us for going to church and you for serving.

Those are the ones that I can think of. Heavenly Father understands why you miss church when you are sick; he understands why we stay home if we need to. He understands so much more than what we do as church members. Special needs are hard and not everyone ever accepts it as “Gods will.” It takes a toll on a marriage, family and the child who has the disability. But it also does bless us. I know for us, our testimony of unconditional love is one that only a parent of a child who has accountability missing could have. They don’t know or understand hate.

As the mom of one of these awesome kiddo’s, I appreciate all that anyone is willing to do to learn about my child and how to help him have a better experience. I am willing to talk to anyone about him. I am willing to share a bit of his amazing spirit with anyone who is willing.

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Insomnia Specialist

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It should be no surprise to any blog reader that I struggle with insomnia.  I have for years.  Even as a child I remember sitting up late at night wondering about things and staring at the wall.    High school and college were plagued with insomnia and even on my mission when I was tired all the time I sometimes struggled to fall asleep.  (My mission was the only time in my life I’ve successfully taken naps but I still sometimes sat up for a half hour to hour trying to wind down from the crazy days).

Well, I’ve recently had a few breakthroughs in my treatment.  I have been seeing an insomnia specialist that is a psychiatrist not an MD.  She can not prescribe medications but works with you to collect data on your sleep and change patterns.  I have been meeting with her for about a month and a half and already noticed some interesting trends:

1. I find it very difficult to sleep without having eaten and not just a snack.  Preferably something sweet seems to be helpful.  I’m not sure if this is the blood sugar that makes me tired or if it is something psychological but it’s certainly fascinating.  The doctor asked me if food gives me anxiety and at first I said NO!  I hate that fat person cliche that we are always crying into a pan of brownies, not true!  Still, I had to admit that the whole process of losing weight and food management does give me some anxiety (which is a different question than does it make me emotional).  It made me think of being a fat little girl who was bullied and I wonder if that anxiety made me a child insomniac?

2. I typically went to sleep around 2 am and woke up between 7 and 8.  We are trying to train my brain to sleep when I tell it to go to sleep so we’ve been forcing myself to stay up until 2 and wake up at 7:30.  It’s been hard but I think it is actually working.  I find myself getting tired earlier than last month.  Maybe it is just my rebellious nature? Can’t be told what to do even by myself!

3.  My doctor ordered me to not have blue light electronics (tv, ipod, phone, computer, etc) an hour before I went to bed.  I was skeptical but I must admit it seems to be helping me feel more tired.  Part of it is I have just been getting bored.  I can read for a little while but I’ve had a hard time thinking of anything else I could do for that hour but sleep and listen to an audiobook.  I’m not going to say the problem is so easily solved but I’m encouraged by the progress in the last week.

4. There are a lot of insomnia myths out there that don’t seem to make much of a difference for me.  For instance, the not eating after 8 pm rule clearly does not work for me (see rule #1).  Eating spicy food and even caffeine in the afternoon doesn’t seem to affect when I go to sleep.  I also can’t take a bath or shower.  Nothing will wake me up faster than that.  Sometimes I can’t even wash my face or brush my teeth (don’t worry do it in the morning) because the water (and peppermint) will wake me up.

5.  Still incredibly sensitive to light, sound and any other stimulus.  Can’t wait to move into my new house away from the pond and tree where I can customize my curtains and get the ultimate perfect sleep! It is my dream to have everything like at the hotel rooms I’ve stayed at.  When I stayed at the Hampton Inn in Folsom I slept for 12 hours! That’s the difference a controlled sleep environment makes for me, more than double my normal sleep!

6. Go to bed only when you are sleepy.  This I learned from my regular sleep doctor but its been reinforced the last few weeks. Never try to get yourself to sleep for more than 20 minutes.  If you can’t sleep get up do something and then when you feel tired try again.  When I think of that horrible incident in February where I couldn’t sleep for over 2 days a lot of it might have been solved if I had just stopped trying and done other things (although my brain was so worked up then I don’t know if that’s the case)

So, I think that’s a lot to learn in such a short period of time.  I’m grateful for good doctors while they last and soaking up all the knowledge I can.  My endocrinologist decided to not do the pay for practice so I have lost him… 😦  I don’t know what I’m going to do.  Makes me weary just thinking about it- maybe that’s the cure for insomnia, think about finding a doctor!

I know many of you struggle with insomnia and I’d encourage you to keep a detailed sleep log and try different strategies, even if they seem counter-intuitive (like eating before bed) and see what works.  I’d be curious to hear your findings and how they match up with mine.

Btw, the name of my doctor is Dr. Lori Neeleman and she is such an easy person to talk to, so insightful.  I really like her.