Tuesday, June 26, 2018

Movie Picks: Special Needs Parenting Edition

If you are like me, the easiest hobby to have as a parent is Netflix. If it's not officially a hobby, just let me live in peace please.

I generally have a nice time right before bed when I watch a DVD or stream a movie. It may take me 4 nights to watch that movie, but it will get done eventually. If you are a fellow parent out there with a child with a disability or special needs, then I have a few movie picks just for you. You know...if case you are searching through thousands of movies trying to figure out what to watch. 
1. Wonder  2017
The previews for Wonder interested me, but, like most movies, I see them long after they were on the big screen. In Wonder, a child with a facial deformity starts school for the first time, and everything that you would expect to happen in the film does.

I rented this movie with intentions to watch it with my 8 year old son. I hoped it would spark a conversation between us, and it did. To my surprise, my daughter joined in on the movie viewing as well and seemed to enjoy it.

There's all sorts of topics the movie brings out regarding bullying, acceptance, peer pressure, loneliness, and the sibling's perspective. This is a great movie for the whole family, and it provides an opportunity to have conversations about tough topics.

2. Arrival  2016
This movie has nothing to do with special needs...or does it? Amy Adams plays a character who must learn to communicate with aliens who mysteriously arrive on Earth. I know what you are thinking. Why is this movie on the list? You have to watch it and then you'll understand. Arrival absolutely tore me up when I watched it. There was serious blubbering happening after the movie ended. My husband had to ask if I was ok. It was that bad. Ha! I don't usually get emotional watching movies, but there was a certain aspect of the story that got me. I don't want to ruin the movie if you haven't seen it. But, there's a question within it. If you knew some aspects of your future life would be painful and difficult, would you still choose that life? Hmmmm...

3. Where Hope Grows  2014
This is a sweet little movie featuring an actor with Down syndrome as one of the lead characters. The person with Down syndrome in the movie is employed and is a valuable member of the community, which are both positive representations I like to see. The story line in this movie was so-so compared to my top picks, but it's a nice little movie to watch.

4. Monica & David  2009
Before the hit television show, 'Born This Way,' there was this amazing documentary called Monica & David. This award winning documentary follows a married couple in love who happen to have Down syndrome. The film explores the topics of independence, expectations, and parenting adults with disabilities. I loved peeking into the lives of this family and seeing perhaps what may be in store for myself one day.

5. The Shack  2017
The Shack...where do I begin? This is a faith-based film, which I know may not be of interest to everyone, but I absolutely loved this film. In the movie, a grieving father meets with God at a shack that was an essential place in his daughter's death. There, he bears his heart and soul out to God while God teaches him about love, forgiveness, and the complexity of trials. If you are a person who has struggled to understand why bad things happen or why our loved ones suffer, then this movie will be of help to you. Sometimes, I feel like faith-based films don't have the best scripts or actors, but The Shack is different. I had some insightful moments while watching this movie and tears too. Excellent movie!

I hope I've given you some cinema inspiration. Enjoy these movies in your spare time!
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Tuesday, June 19, 2018

Intellectual Disability: Preparing for Baptism

Last week, I had a post on Key Ministry's website offering ideas on how to prepare those with Intellectual Disability (ID) and Developmental Disability (DD) for baptism. If you missed it, check out the beginning of the post and then click the link to read. 

Baptism is a sacrament that many in the faith want to pursue. But, what if your loved one has an Intellectual Disability (ID) or Developmental Disability (DD)? Can they be successfully baptized? How do you help them understand and prepare for baptism?

As a Christian mother, I had a God-given desire to see my child with Down syndrome baptized a few years ago. At the time, she was 8 years old, nonverbal, and dealing with a myriad of health conditions.

I was puzzled, at first, on how to prepare and teach her, but then I realized I knew what to do. As a pediatric speech-language pathologist, I help children understand new situations and concepts all the time using multiple visual and auditory methods. I just needed to apply them to a religious act.

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Tuesday, June 12, 2018

Reading After A Diagnosis: A Cautionary Tale

Almost one year ago, my son was diagnosed with Ehlers-Danlos syndrome (EDS). It was a diagnosis that came after a few years of questions and unexplainable issues. In a way, the diagnosis was a relief after getting no answers for so long. During my son's initial diagnostic appointment, the genetics doctor gave me a few book suggestions that several families have found beneficial. I scanned through the list eager to find something to read. 

Within a week, I purchased one of the books, Joint Hypermobility Handbook. I started reading the book shortly after receiving it. A year later, I still haven't finished the book. In all that time, I have made it to page 150 of 220. Before you remark on my slow reading, I want to clarify that I have read several books in the past year on my Kindle. I have simply chosen to take my time with this book. Even though I was eager, I wanted to keep my sanity. 
You see, I've been through a diagnosis before. Nearly 12 years ago my daughter was born and subsequently diagnosed with Down syndrome. Within a month of her diagnosis, I had a stack of information and books. I devoured them like I needed them to survive. A fellow parent advised me to take Babies with Down syndrome: A New Parent's Guide in chunks and reference it when needed. I didn't listen. I read every word in that book. And.....it made me so very fearful. 

As I have written before, my daughter's diagnosis at birth seemed to trigger more emotions and fears for me compared to my son's. (See my post Diagnosed: Birth VS Childhood) I suppose I took in all that information about Down syndrome because I wanted to get a sense of my daughter's future, my future, and our future together. She was so young and tiny; there were so many unknowns. I read everything to understand my newborn but also to try to see the unforeseeable future. 

The new parent's guide book is lovely, and I don't want to sound like I'm bashing it. It has basic information for a new parent that is helpful. I fully support new parents reading this book- just not the way I did. I didn't use it as a reference when issues came up or to research certain topics. I read it cover to cover, and I walked away feeling very overwhelmed by all the possible things that my daughter may face. 

Celiac Disease? Atlantoaxial instability? Sleep apnea? Those sounded scary. Leukemia occurring 10-30 times more often in children like mine. What?!? Thyroid issues? Late toilet training. How long will Jaycee be in diapers? Therapy. Special education. IEPs. Yikes! It was ALL too much to take in at once. 

The book scared me. Every possible thing that could occur with someone with Down syndrome was listed. Of course not every baby would end up with all the problems in the book, but I didn't know what was in store for Jaycee. In the state I was in, which was a post-pregnancy hormonal driven state, I was not prepared for this information. 

I look back now and wonder what I was thinking. Why didn't I just put the book down? It was just a book of possibilities and basic information, not firm plans for Jaycee. The book sparked a ton of fear in me, so I recognized what was happening last year with a different book. 

I was smarter for child number two and his diagnosis. I started reading the EDS hypermobility book. There were "ah-ha" moments. "Oh that's why he does that," or "I didn't know that issue was related to his EDS." These parts were helpful to understand my son. 

But then came one too many bits of information that left me feeling unnerved. I felt it rise up in me again. The fear of the unknown for my son and the list of possibilities. Starting with...Pain that affects a person's ability to do certain jobs as an adult and requires several medications to control.

After that section, the reading stopped for awhile. I had to digest that and mourn my son's future with pain (or predicted pain). Then came sections on heart palpitations and POTS... After my daughter's heart problems in the past, this one kept me up for a few nights. I didn't want to think about my son having heart issues too! That led to a very long pause in the reading again, which was followed by a serious internal debate on if I should continue reading this book at all. I was starting to get fear and anxiety from the list of possibilities, but few applied to my son currently. Who knew which ones would apply to him ever?

After a few months, I started reading again..headaches. Not fun. Unique dental challenges. Ugh! A few more pages...I stopped. And there I remain on page 150 after beginning a year ago. 

I read the Down syndrome book like one pulls off a band-aid. One quick painful motion, but it was over. I knew "everything" I needed to know after it was completed. I didn't like how I felt during the process though. The EDS book has been read like option two for a band-aid's removal. Slow, methodical. The pain is duller but it's over a longer span of time. I'm still not done with that band-aid. I don't know what other symptoms will be described beyond page 150 and if I'll feel better or worse after reading them.

I know what I need to know for right now. I love both of my kids. Whatever happens in the future, I'll face it with them. Every person with a diagnosis is unique. There are no two children with Down syndrome who are exactly alike in their challenges, strengths, and weaknesses. Some of the things that worried me about Down syndrome didn't happen to Jaycee. The same will probably be true for my son. Whatever EDS brings to Elijah, I'll support him through it.

Right now though, he needs a mother with a clear mind not bogged down by fears and possibilities that sound hopeless. So I'll stay on page 150 as long as I need to be. Instead, I'll open up my Bible and read what God has to say too. I'll ask God to help me parent these remarkable children, and give me hope for our future.

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.
Romans 5:3-5 NLT
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Tuesday, June 5, 2018

If My Daughter Could Really Talk

My daughter's communication skills have grown exponentially over the past 4 years. For 8-9 years, she was nonverbal. We first communicated with sign language and other nonverbal methods. Later, she used her communication device to expand her vocabulary and "talk" about more subjects. Then, much later than expected, she started trying to talk more and more.

Now at 12 years old, Jaycee's verbal speech continues to increase. There are some words she can say very clearly like mom, dad, bye-bye, hi, yes, and papa. I love these words. They are precious.

Some words are missing consonant sounds or have the wrong consonant. Some great examples of these words are:  Pi-a (pizza), hickles (pickles), ip-ops (flip-flops), goo- -ob- bubba (good job bubba), eh-he (spaghetti). As her mom and a pediatric speech-language pathologist, I have come to understand her speech patterns and know what she is saying most of the time. I'm happy she's attempting to talk after years of silence.
Because of Jaycee's speech and language delays, we do a total communication approach. She can sign, use her communication device, speak, or gesture to communicate. Still, it's not like I can converse with her about anything and everything. There are some things she literally cannot say.

Similarly, there are some topics that I don't know if she understands. She has an Intellectual Disability, which affects how learns, remembers, and comprehends. This, too, impacts our ability to communicate. I try to simplify my speech for her, but it's hard to really know what she knows at times. With my son, he can ask questions to clarify or offer his own thoughts. This doesn't happen with Jaycee.

If, for a moment, my daughter could really talk like any other 12 year old, this is what I would ask her:

-I've told you that you are going to a new school in the fall. Do you have any questions or thoughts about that?

-What do you really enjoy doing besides watching movies and listening to music? What hobbies would you be interested in trying?

-Do you hate doing your medicine everyday?

-How does it feel to wear your bi-pap at night?

-What happens during a school day that you like? That you don't like?

-Sometimes you get really scared when we go to the hospital for a regular appointment. What are you thinking about? What scares you about it? How can I help you in the future?

-Sometimes you sit down and refuse to move when you walk for awhile. What's really going on when you do that? Does something hurt? Are you just tired? How can I help you?

-What do you really enjoy doing with me?

These are some questions that I would really love to have answered. I want to know more about what my daughter understands, thinks, fears, and feels. Maybe one day she'll have the ability to do it. Until then, I am grateful for the things she can express, and I'll keep interpreting her behavior as best I can.

After all, there was a time when I thought I'd never hear the word "mom." Now, she says it in several different tones all with their own meaning. Perhaps, one day these answers will come too. A mom can hope...
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