Friday, October 26, 2012

How to talk to a SN parent

By Marty Barnes
I am a mother of an amazing little six year old girl, Casey.  Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring). 

Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.

First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.
Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?” 

·          Does she have a cold?
·          He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.
·          Oh gosh, he is really throwing a fit, he must have autism, right?
·          How old is she?
·          I have a little boy that like’s trains too (if the child is holding a train or something).
·          That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child. 
NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

·          What’s wrong with him/her?
·          Is he/she sick?
·          Should I call someone for you?
·          Do you have to do that here, can’t you step away?  That’s so gross.

·          I have never seen anything like that (referring to equipment- not the child), what is it?
·          It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away. 

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

·          Wow, how do you do all this?
·          I don’t think I could do this at all.
·          I’m impressed, you really juggle a lot. 
·          Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective. 

·          Oh that’s nothing, so what if your child has ADHD at least they walk.
·          I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
·          How long will this last?  Or how long does he/she have?
·          It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.  (some examples found here)
·          Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc. (page 6 has more suggestions)

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder. 

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

Friday, October 19, 2012

Early Intervention- So much accomplished, so far to go

Doing the best I know how
Let me preface this blog by saying the team of therapists we work with are nothing short of amazing. Both my wife and I really enjoy working with them. We trust them, and trust their best intentions in regards to development with our son. Our six month assessment is on Monday, and I'm equal parts nervous and eager to hear where they see Jayden's progress.

Has he made strides? Undoubtedly, yes. His ability to comprehend to what we are saying has improved significantly. He focuses and interacts during activities better than he used too. But his ability to communicate through speech is not improving nearly as quickly as we hoped.

The amount of words he can say has improved. He can now say about 15-20 words. But unfortunately most of them he only says when prompted to. He babbles all the time, and based on his body language I have no doubt he knows what HE is saying, but it still doesn't make any sense to us. I look forward to a time when he uses the words he knows in an appropriate fashion.

Comparisons are dangerous, counterproductive, and create unneeded stress, but I would be lying if  I said I don't notice friends and strangers with kids who are clearly a lot father along at the same age, or even younger.  It depresses me. Why hasn't he put it all together yet? How much longer will it take? I knew the road would not be easy, but quite candidly this process is harder than I originally thought. Which brings me to the question the cuts to the core of this post:

Am I doing enough as a parent?

Am I failing my son?

Of course I know that's not the case, but these feelings cross my mind. Probably more often then they should.

I have been a stay at home dad for the better part of two months. Most days are wonderful, but other days are really tough. Sometimes I wonder if removing Jayden from the daily interaction of daycare has stunted his growth. Balancing what's best for Jayden and what's best for the family can be tricky.

We have agreed to double up his therapy sessions moving forward. We are hoping that an increase of sessions coupled with some new exercises will help him make big strides. I understand that six months, a year, five years down the road, we will look back and celebrate how far he's come. I just can't wait to get there.

Wednesday, October 17, 2012

Dear Hazel

By Rob Berry

Dear Hazel,
I haven't written to you in a while and for that I apologize. Life has become super busy again and that makes it difficult to find the time and motivation to write. This new level of activity really does signal that life is becoming 'normal' again.

You have grown  up so fast. It is hard for me to believe that you are now almost 14 months adjusted (18 months actual). Just this morning while watching cartoons with you, your mom and I were talking about how you are no longer a baby, rather you are a little girl.
How is it possible? It seems like yesterday that we were at your bedside in the NICU, spending countless hours saying our prayers and doing any little thing we could to help you get bigger, stronger, healthier. At that time you did not know what quiet was. There were people constantly in and out of your pod, machines whirring and monitors blaring. Every moment of the day, something was happening.
Last July, we were able to bring you home after four months in the hospital. What a glorious and terrifying moment that was. We got used to it pretty quick. Your mom and I worked as a team and attended to your needs as best we could. At that time it felt like you would never come off of your oxygen. It took longer than we thought but as I hold you today you have been off for 7 or 8 months.
Fast forward to today. All of those noises, all of those worries are gone. I sit in your bedroom watching you sleep. The house is silent except for the faint sound of your mom preparing dinner downstairs.
This day has been filled with laughter and smiles. You started walking three weeks ago and today you spent the morning walking all over the house, following your mom and dad around like the world's most adorable puppy.
You are so inquisitive and so determined. Once you set your mind to something, that's it.  We have no doubt that these traits served you well early on in your life and have helped you to become the little girl you are today. Don't ever lose that fire.
I just wanted to let you know that not one day goes by where your mom and dad don't stop and think about how lucky we are. You are our little miracle. Watching you go about your business makes us realize that there is nothing we can't do as a family.
One bit of advice before I sign off. Always remember when life gets busy that it is important to stop and smell the roses every once in a while. Be the best person you can be each and every day.
If life gets tough, which it surely will, don't forget to feel grateful for all of the good things in life. Surround yourself with friends and family who love and support you and forget everything else. Your mom and dad will be there to offer a kind ear and support you through life's moments. Never forget that you have the strength to conquer anything that stands in your way.


Monday, October 8, 2012

Entering Isolation

This is a season of change for most people. Whether it’s the start of school, hunting season, or football games, many of us can stomach the end of summer by appreciating the changes fall brings.
One unwelcome change stems from the drop in temperature and more time indoors - sick season. Colds, flu and the dreaded RSV start to rear their ugly heads during this time of year. It's not fun for kids that get sick, it's not fun for parents that have to take care of sick kids, and it's not fun for parents who get sick from their sick kids.
For parents of many preemies, this season brings even more dread and fear. Preemies, especially micro-preemies with bad lungs and underdeveloped immune systems, are quite vulnerable during this time. A cold or bout of flu can land a preemie in the hospital. RSV can be a killer.
To protect their little ones from these dangers, many parents of preemies take the extraordinary, but wise step of isolating their preemie from large public place, sick adults, and most children (other than siblings). From anywhere starting in October and extending into April or May in the first year or two of a preemie's life, a protective bubble of sorts forms over the home only to be burst when the coast is clear or for doctor visits. This can be especially hard on the parent that is necessarily isolated as they shield their child from the bugs and viruses we can't see, but all know they are there.
In our family, my wife, Jessi stayed at home with our 23-weeker son, Jack. He had chronic lung disease from being on the ventilator and required home oxygen for the first six months we had him at home. We didn't want to take any chances, so an invisible wall was built around our home where visitors weren't welcome (with a few exceptions) and the only person going in and out on a daily basis was me for my job outside of the home. We didn't go to church together anymore, we didn't go to the store together or out to eat as a family. We even avoided big holiday gatherings with lots of the people we love. Friends and family can pass on bad germs too.
Needless to say, isolation is something that can be very difficult for the parent stuck in an almost prison-like setting. I had personal interaction with people all day at my job - Jessi had her phone and Facebook. I had to travel as a part of work - Jessi's existence was largely relegated to four rooms in our house. She did it for two long winters, and I can't begin to imagine how difficult it must have been.
If you have a new preemie, you or your significant other may soon be entering some form of isolation to protect your little one from some nasty illnesses. If it's you within the winter fortress, I can't begin to give advice since I did not go through it. If you are the parent that has to work outside of the home while the other parent takes one for the team, I do have some advice:
1. Constant contact - we live in a time where we have email, texting, Facebook, phone calls an more. Use all of them often to reach out to your significant other. Ask how they are doing. Ask them if you need to bring something home after work. Be helpful and thoughtful.
2. Kick them out the door- whether they want to or not, volunteer often to watch your child while your significant other goes out with friends & family, sees the outside world, and forgets temporarily about the bubble back home. It will help their sanity immensely.
3. Date night – your significant other may not just want time out of the house – they may want time with you. I recognize that this may be altogether impossible for some couples, because it requires you to leave your baby with a friend or family member. You may not have someone to leave your child with. If you do, however, take some time once a month to get out together as a couple.
4. Make it to big doctor appointments, meetings – adding to the feeling of loneliness as part of isolation is when the parent at home is also alone during the few times they leave the house for doctor appointments or meetings regarding your child. Once a month, Jack visited the doctor for weight checks, several shots, and general checkups. We were also meeting with therapists to discuss early intervention. I made as many as I could. Trying to make these big meetings or appointments will reinforce that you are not leaving your significant other to do all of the heavy lifting by themselves.
There is no way around it – isolation is tough for the parent who stays at home. But you can make it slightly easier on them. For more information about Jessi’s time in isolation and survival tips, visit her blog about Jack at:

Thursday, October 4, 2012

Am I a special needs parent?

Jonah (at home) with his son Nash
By Jonah Rhodes

With Nash being in the hospital in Dallas, two and half hours from where we live, I find myself with a lot of time to think while making my weekly commute to spend the weekend with him and Melissa. It was during my drive last week that I  asked myself this question, "Am I a special needs parent?". 

I think for most parents this would be a dreadful question, one they'd never be willing ask and wouldn’t ever want to hear the answer "Yes" to. Well I guess that's where I differ from most. I find it an honor to have been chosen for this task. Yes, I understand Nash doesn't seem like a special needs kid, but that doesn't take away from his need for special care. I don't mean to offend anyone who thinks I’m taking it lightly or would say Nash isn’t a true special needs child. The fact is, he will need lots of extra care for a good bit of time. While the doctors have said he will grow out of most of his current problems, that doesn't take away from the time and attention that goes into his daily care.  The thought of having a baby with a Trach or a baby who will have to be on a ventilator for awhile would have scared me to death six months ago.  Instead, it has become second nature, and I am finding out that the only thing special about a kid with ‘special needs’ is no matter what kind of need the child has, it isn't the need that makes them special it's the joy they bring into your life that makes them special. 

I need Nash far more than he will ever need me in life. He has brought a new purpose and a level of compassion I have never known.  I have been blessed to be chosen to have the honor of helping Nash get over this little hill. In the beginning what seemed like a mountain that couldn't be conquered is, in fact, just a small bump in the road. I'm here to tell you that indeed, all things are possible through Christ. I know there will be some hard days ahead and lots of care for him that will be left up to me and Melissa once he comes home, but the joy that Nash brings me is the strength that fuels my desire to be the very best dad and caretaker I can be for him. Seeing him smile is all the reward I ever need.  So I leave you with this poem that was posted on the Poppa’s for Preemies page. This poem expresses just how I feel about Nash.

I Still Would Have Chosen You
~By Terri Banish
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you... 
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you.
If He had told me, "This soul may make your heart bleed", I still would have chosen you.
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you.
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you.
Of course, even though I would have chosen you, I know it was God who chose me for you.