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A (special needs) Father

June 16, 2013 in Celebrations, Featured, From Julia by Julia Roberts

We’re sons, brothers, husbands and friends.

We’re strong, we’re fragile. We’re comforters, we’re providers.

Some of us are primary caregivers in the world of our kids with special needs. Some of  us are supporters of the primary caregivers; we make it possible for the primary caregiver to give all they have to our unique kids.

We’re income and insurance providers. We’re silent worriers. We’re gifted at building up confidence in our kids and shouldering all the pain for milestones never achieved.

Some of us research and reach out about our kids’ conditions, some of us reach in and burrow down and get done what we must. Some of us have few friends who know the truth about what it is like to live in a world of special needs parenting, especially as a dad. Some have few friends on purpose and some based on circumstance of our life.

Some of us are accepting of what life has handed us. Some are not. It’s a good day when we realize that each path in special needs fathering is right when a father is present to witness the good and the bad.

We hurt for our kids and we wish for what all parents do; for happiness, acceptance, and a competitive nature in our kids. For a beaming self-confidence.

We wish for them to live without emotional pain and physical pain yet we gladly make ourselves present for our kids and those we love to help ease it.

We know our relationship with our kids shapes their lives, as any father, but we know it also has a greater impact to all around us because it takes greater effort and engagement.

It is simple. We wish to help our kids be happy. We wish for them to go out in the world and be loved unconditionally. Just like any father.

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Reposted

Please read about site co-founder Julia’s daugther Quinnlin’s story on Build-A-Bear Workshop’s blog, Behind the Seams. 

How to Talk to Your Kids about Their Harsh Realities

June 12, 2013 in Featured, From Julia by Julia Roberts

shutterstock_1956049 (2)Today I have a blog post about a bout with a deadly infection my daughter had and the conversation I had as a result. A warning of sorts, so she could understand the seriousness. She did. And it made me think about how I’ve handled talking to the kids over the years about their health.

Years ago we deliberately decided to be honest with the kids about their issues, wanting them to not have any shame around their disease/disorders because they thought we were hiding it from them or anyone else.

We have a no secrets policy.

Diagnosis:

  • We’ve often just said what we thought was appropriate for their ages:
  • Your _____ doesn’t work exactly like it should, so you have to take medicine. 
  • Everyone has something, your thing is just this.
  • You’re right, it’s not fair.

Medical Procedures:

  • As truthfully (and not scary) as possible we describe the procedures. Even when they were little we used the proper descriptions of medical equipment. We do say blood, needles, etc.
  • When we act confident about a procedure or appointment, our kids feel better. If you can’t be calm about something the doctor is going to be discussing, bring someone with you to take your child out of the room. I am not against our kids seeing us upset, I just think we have to think about the context/situation.
  • When you’re describing a procedure, speak softly and slowly, allowing them time to think and ask questions or bring up something they are uncomfortable with.
  • Interpret for your healthcare professionals. You know your kid. Even if a doctor is compassionate and caring, the way they are describing something might not be the way your kid needs to hear it. It is okay to slow something down, revise something the doctor is saying and present it in a way your kid understands.

Risks:

  • While it’s hard to pre-think about the risks your child may face, try to prepare yourself for the symptoms, procedures, and recovery they may go through. If you have some time to prepare what you might say, it’s easier to deliver. 
  • You know your kid, so adjust what needs to be communicated based on their age and/or development about the hard stuff.
  • Prepare even for the unexpected. As hard as this is, I encourage you to face the hard things yourself. For example, it had never occurred to us that our son would go on dialysis because we’d always planned a preemptive transplant, yet, we found ourselves faced with beginning dialysis in a matter of a few days. I had never discussed the possibility of dialysis with him. Not one of my better parenting moments, waiting to figure that out. I ended up telling him the machine was going to clean his blood and had to clarify that the blood would go out but more importantly be put back in by the machine (he missed that part somehow in the discussion).

Be Kind to Yourself:

  • We mess up. We just do. Be kind to yourself when you think you’ve had a misstep explaining something to your kid. It’s okay to take a deep breath and re-explain something. 
  • It’s completely okay to say, “I don’t know.” Did you read that? It’s okay to say, “I don’t know.” It’s okay to say, “Let me think about the best way to talk to you about that…”
  • Talk things through with someone. Listen, I think we can all use someone professional to talk to, unfortunately we all do not have the luxury of time and money to make sure we have a therapist on-call. We can however, reach out to someone we know to be understanding and talk to them about how we’re going to address something with our kids. I find it especially helpful to talk to someone who knows my kid really well or has been through something similar.

When in Doubt:

  • Be honest. Err on the side of honesty, always. You may have to dial down what you say and how you say it, but honesty always wins. 

5 (special needs) Relationship Tips

May 1, 2013 in Featured, From Julia by Julia Roberts

vacatJust off of a blissful 18th wedding anniversary I wrote this post with tips on how we’ve made our relationship (with the challenges we’ve faced) work. I’ve been thinking about this a lot because we are approaching our 19th anniversary in June. We’re even getting away for a night or two to a local hotel. To sleep and well, you know, to do the other stuff we can do when we’re allowed time to think and be together with no responsibility but to ourselves and each other.

Even in this 19th year we’re still learning. We’re still seeking to be better partners to each other and how to make things work better for our little family. This past year especially, we’ve grown closer. I’m happy – and even a little proud – to say that we’re reinventing our couplehood. This isn’t something I thought we could do, or I guess I didn’t know we would do.

Over the many years since we had two kids with special needs, we’ve learned how to cope as a couple but the challenges took their toll. Our situation was at times, very tense. Multiple appointments for the kids for years, major life-saving surgeries, management of dozens of meds and treatments, educational road blocks, emotional fall-out of medical trauma and of course the debilitating depression of our son, who was suicidal for a couple of years.

We were (and still are) certainly on the same team, meaning we were a couple unit (romantic, right?) with the same goals 1.) Keep the kids alive. 2.) Keep them emotionally stable. 3.) Keep them on track educationally. 4.) Keep them on track socially. 5.) Be fiscally responsible to help them in the future and then everything else like give them experiences, help them become good citizens, and help them have confidence and so on. Like I said, we’re a unit in the parenting thing and we’ve learned a few things along the way…

1. We accept the roles in the family that work the best. I do what I’m good at and he does what he is good at. We can pinch hit, and then there’s that Hit By a Bus Plan I’m so proud of.

2. We’re both flexible enough to take our relationship and roles into negotiations with each other. In the past I’ve said, “I can’t order these meds anymore, you’re going to have to take it over, or at least the 17 at CVS and I’ll do the 6 mail order.” We did that a few years ago and it works. We constantly are swapping out duties, sometimes even for a little bit.

3. We’ve always made time for each other, even if it wasn’t officially a date night. There were a couple of years we didn’t go out. Or at least not very much. We had one friend and one sister we felt could stay with the kids during the worst and so, we just didn’t go out very much. But we did trick the kids and put them to bed early (they can’t really tell time) and have a date night with our favorite take out. TV off and work pushed aside. It was intentional in-house dating and completely enough to lead into “date” night, otherwise known as sex night before we passed out from exhaustion.

4. You’re important too, at least you should be to yourself. I preach to caregivers about doing whatever they have to do in order to steal some time for themselves be it for a movie, lunch with friends, sitting in a park reading a book, or doing a hobby you’ve been pushing aside. Do not underestimate how important this is. I’m sorry, I can’t take the excuse from nearly all of you that you’re too busy. You can take 1 hour a week or two 30 minute segments a week. I do it and I know you can too.

5. Don’t give up your sex life and if you do, go get it back. I wish I could tell you there is some secret to making this better for couples like ours. You know, overworked, stressed out to the max (sorry typical parents, we have you beat on this, we just do), financially strapped/stressed, worried constantly about what we’re going to mess up or miss that could impact our kid, and well, that is all a recipe for a low to no sex drive and life. In the last year or so I’ve decided to change it for us and well, we have. It was very intentional. Say no to thinking your sex life is ever going to be spontaneous again, those days are O.V.E.R. Be intentional. I will say, for us, all of the sex we’re having is honestly making all of the stressors I’ve listed above not seems so terrible. And we’re closer than we’ve been in a long time and we were pretty close before, honestly. So, things are pretty good. I suppose I have to break down and write about the sex game changers for us, huh?

My beloved is going to be so happy I’m sharing our sex life on the Internet. We are pretty proud of it though (he recently had a conversation about it with a male stranger in a bar). Feel free to add to the list because I’m still learning and can use all of the relationship tips I can get, too!

That picture above (taken in a London pub by one of our kids) sums up our relationship accurately…out of focus, off center, fun, laughter and maybe a cocktail or two to fun things up.

Tips for Making Life Easier in Special Needs

April 25, 2013 in Featured, From Julia by Julia Roberts

I was driving my son to an appointment the other day and I was thinking about the chaos our family used to be in when he and his sister were little. Like years ago when we had 15 appointments a week and my head was still spinning because of the diagnosis and the new life and the missing of the old life.

1. Hold One Day Sacred – When we were at the height of therapy and doctor appointments in the early years (12-15 per week) I was committed to having one day a week when they didn’t have an appointment. Our day was Thursday. I would never, ever schedule an appointment on that day. It became a day we treasured when they were little.

2. Double Up on Appointments – We try to double up everything by scheduling things together to get appointments out of the way in the same day. The kids have come to appreciate getting them out of the way by interrupting their lives just one day.

3. Easy Clothes – For my girl with low muscle tone? Leggings, jeggings or jeans with elastic sides so buttons don’t need to be used.

4. Find Your Circle – find your people and hang on to them. When you find people who support you and your family in the way you need to be supported do not let them go.

5. Find Yourself (or don’t lose yourself in the first place) – Keep something of yours sacred. Fight to keep a hobby going or find one. Carve out time for yourself even if it’s a stolen 30 minutes a week.

 

Special Needs Parent Wish List

April 18, 2013 in Featured, From Julia by Julia Roberts

Looking for a new healthcare provider, therapist or tutor? What do you want? Because I have two kids with multiple issues, we’ve had the chance to work (and fire) a lot of professionals. What do you look for in a healthcare partner? Can you add to this list?

Accessibility and Response. Ask about the best way to give and get information. If not through emails then by fax or calling and preferably a specific nurse in the practice or department. (WOULD LOVE THEM TO BE ON EMAIL!)

Knowledge.  Do they have specific knowledge about my child’s condition? Unless it’s rare. And if it is rare (as is our case) will they approach my child’s case with a willingness to learn.

Willingness to listen. Ask if they have time to address a list of questions you might have.

Competent and friendly staff. The nurses and office personnel

Location. Travel time, traffic patterns, days of the week appointments are available

This Special Needs Parent’s Make it Work List

Communication. I put a lot of things in writing so we were all clear. If I expected an answer to something or wanted to inform the doctor/practice about another doctor’s report/treatment I would write it down and fax, mail or leave notes for the files on visits.

Prepare. If we have an appointment with someone whose communication style is different from my own I over prepare because I can often be thrown off course trying to understand everything they are throwing at me. So I write my questions down.

Confidence. I know my children best and I like to work with healthcare professionals in a team approach but sometimes it doesn’t feel that way. I’m no longer afraid to speak up – respectfully – when I need to in order to get answers, clear the air or get clarification on something regarding care.

Intuition. I am confident in my intuition like I wasn’t in the early days of diagnosis. I’ve learned that my intuition is usually right and I don’t let my fears stop me from expressing my concerns. As a parent, I’m armed with the fact that I know my child best and that means something important. If it doesn’t seem like it’s important to someone on the team I don’t give up making sure my voice is heard.

I encourage all parents of kids with special needs to speak up and help change things that aren’t working at a practice or department to impact change for parents behind us. Likewise, when you have care that is exceptional be sure to share that with the team because chances are they don’t hear that often enough.

Some practical tips I have that help our relationships with the medical community…

- Files! Keep incredibly good files. Ask for copies of everything and keep a log of the dates of important time markers.

- Appointments – ones that take months? In order to get in, I called every day until for a “cancellation” until they finally gave up and fit us in. I’ve tried to be flexible.

- Office staff – When they’re having a bad day I try to not let that impact me and especially my kids but I’m not afraid to mention it to them or the doctor.

- Infiltrate. I try to make a point to get to know the nurses/office staff of the doctors – they are the way to information and refills! Things are just easier when you know someone.

- Be Nice. I send picture cards of the kids. I’ve been known to have the kids bring in pictures. I’ve been known to bring in a caramel corn or brownies, too. 

How to Support a Family During a Pediatric Mental Health Crisis

March 20, 2013 in Featured, From Julia by Julia Roberts

In light of the recent Ricki Lake Show putting focus on pediatric mental illness and community member and contributor Chris Hickey and her son Tim, we’re re-running this post about helping a family during a mental health crisis. This originally ran Auguest 29, 2012. Thank you Chrisa and Tim for sharing your family’s story. We’re so grateful.

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When a friend contacted me about a child in her daughter’s class who was admitted into a psychiatric hospital for attempted suicide I was grateful. She’d wanted to know how to support the family, deal with the rumors swirling and how to communicate with her child about her classmate.

Like I said, I was grateful. I was grateful for the chance to share what we’ve learned. I was thinking “wouldn’t it have been great if all parents had done that in my son’s class when he was admitted.” Instead, I was asked not to blog about the situation, because the school was, apparently, getting push back (about my son attending the school or being in that class) from some parents in my son’s class. I took a few days off of the blog and came back with more resolve to tell our story - our way - as my friend Lori so lovingly (forcefully) told me to do in an email that horrendous week.

It is not complicated, this thing we call support. It’s the same support we need through medical crisis but because of the stigma surrounding mental health, families are often left feeling alone and isolated.

  • Talk to Us. One thing that mental health crisis is, is isolating. We need for people to not be afraid to talk to us about mental health issues. Even if you don’t know what to say, call. It’s okay to say, “I don’t know what to say, but I’m thinking about you.” 
  • Talk Sensitively with Your Kids. We need you to be sensitive about what you say to your kids about our kids. Kids don’t start off hateful towards  kids with differences, a lot of times, they have help. It’d be great if you could just tell your kids everyone is different and we all have issues, and our families are doing the best we can to help our kids.
  • Have Your Kids Show Support. It’d be great if your kid could write a note to my kid. When my son was out he got two notes and they were from his best friend Laura.
  • Offer Help. We need playdates and/or babysitting for our other kids. They need rides to and from school and activities. If our kids share an activity, it’s easy.
  • Food. Not much because we barely want to eat anyway, but you’d be surprised the amount of comfort that comes from a basket of homemade muffins left at the door.
  • Surprise us with Notes. We need notes and cards and emails of support.
  • Good Wishes or Prayers. Some of us need prayers, all of us need good thoughts and wishes. Then tell us by email, text or phone calls.
  • Stop the Gossip. We need for you not to gossip about our kids. If you have a question, call us. Most parents I know who have dealt with trauma like this will answer your questions and welcome the chance to talk about it with someone offering compassion and understanding.
  • Reach Out Through Channels. If you want to do something and are unsure how to support the family because you are not close, go through the school. Ask the teacher, administrator. Legally, they can’t tell you anything, but you can request they send a message to the family from you.

It’s really about common sense. How would you treat a family who has a child out for a kidney transplant? Or out for a extended time for a chronic illness? If you’d send emails and bring food and set up a schedule to babysit, then do it for this crisis as well.

You’d be surprised at the lack of compassion for a family who simply has a child who suffers from a mental illness resulting in an emotional breakdown. In our case, you’d be surprised about the lack of compassion for our family when our son wanted to kill himself.

Questions about how to support a family with a mental health crisis? Ask me. There is no stupid question if you are coming to it from a loving, compassionate place.

Programmed to Hear the Negative

February 20, 2013 in Featured, From Julia by Julia Roberts

My son recently changed schools. He began on a week that was only 3 days and wasn’t even acedemic, which was good, so he’d have time to adjust to the people, new routine and new rules.

So he recently had a regular acedemic day and we got an email from his teacher. He’d experienced some anxiety and had needed to be redirected from doing a couple of minor things and so she was emailing me to tell me about it as well as ask for suggestions. She mentioned that he probably didn’t trust them yet but with time it would get better, she said, she told him he’d be fine, to relax about the classwork for now, to just listen along.

The only thing I first read and took in, were the behavior based issues. I looked right past the amazing things she said and how she wasn’t really telling on him to get him in trouble as much as she was reporting to inform me she had his back, her eye on him and of course to ask for suggestions to ease his anxiety.

Light bulb! I was stunned when I realized the real reason for the email. I’ve been so programmed over the last couple of years to hear/read reports of all the negative things about my son and very few positive reports. That’s not saying the positive reports weren’t there, it is however, supporting the fact that the negative over shadowed the positive in numbers but also in importance of the negative in the communications from the other school.

I realized I had let the old school’s way of communicating about my son train me to only read/hear the negative from others because that is largely what they shared.

Apprently he isn’t the only one who has to jump into a new atmopshere and do things differently. I thought his move to a new school was about only about him. It seems this was a good move for the entire family.

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Our Parenting Bandwidth

February 13, 2013 in Featured, From Julia by Julia Roberts

Last week we were forced with moving our son from one school to another mid-year. We’d put off this change, even though we thought about it two months ago (Devil you know vs. Devil you don’t know type of thing.). We didn’t do it back then for a number of reasons, but then we were forced to do it and it felt overwhelming.

We dealt with it fairly quickly because we’d had a school picked out for next year anyway but then the money (double tuition, people), the forms, the uniforms, supplies, and helping him with anxiety that such a move would bring. It was extra stressful for that week during transition.

Sometimes when I’m in the middle of a crisis I forget there was a time before the last crisis and there was a time before that one as well. There was a time when I didn’t think I’d be able to handle One. More. Thing.

Yet, we do. We’re conditioned, we parents who live with uncertianty, to figure out the next possible crisis before the current crisis is completely worked out. In this case specifically, we were lucky because he’d already been admitted, we just pushed up the start date by half a year. But still, it was stressful. I was feeling anxious for my son, so I can only imagine what he was feeling.

Do parents of kids with special needs have a bandwidth that is wider than that of *typical parents? Probably. I’d venture to stay that typical parents look in awe at how we handle it all but I’m fairly certain if they had to handle more they could.

I parent at a stress level higher now than I used to because I know sadness can come, tradgey can befall, and changes have to be made swiftly. I think for me, understanding that I’ll have to employ new tactics, face new fears, fight new fights, live in ever-present state of change make me realize that I have the bandwitch to do more. This is both a good and bad thing to realize.

*my term for parents of typical kids

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150x150_adMabelsLabelsThank you to Mabel’s Labels for their sponsorship this month! Be sure to connect with them…

Mabel’s Labels site, Twitter, Facebook, andtheir blog! Subscribe to their newsletter here.

Did you know that Mabel’s Labels can help you fundraise? Check it out here!

What are Preschool Shoe Labels? Help your toddlers learn left from right AND label their shoes with their names!

 

It’s the New Year and The Resolution?

January 2, 2013 in Featured, From Julia by Julia Roberts

The last few New Year’s time marker have been hard for me for some reason. I think it’s because my resolutions are often basic, simple ones. I’m guessing they are pretty lame for the typical parent, I mean, who has a resolution to keep a med cabinet organized?

That’d be me. I also want…

To go the year without having to find a new specialist.

The kids’ education plans to be followed, without having to check on them.

Another weekend away from the kids without feeling guilty.

My insurance company to pay all of the claims they are sent.

Homework time to go smoothly.

Only successful med changes.

My kids to be happy. Accepted. To have friends.

Okay, so maybe I do have a few more like eat healthier, get more exercise, you know, the regular stuff. Or I could scrap it all by tomorrow the fourth!

Happy New Year…

Gift Shopping (for special needs)

December 5, 2012 in Featured, From Julia by Julia Roberts

You guys! I am not lying when I tell you this is the first year (maybe ever) that I’ve not had most of my Christmas shopping done by Thanksgiving – or at least a plan for what I need to order online. This year? For some reason (doctor appointments, med issues, school challenges anyone?) I’m way behind. This is why I’m fairly happy to be clicking through looking at a gift guide.

I’ve had the pleasure of checking out the Mayer-Johnson website (for the last hour) and I’m excited because I may have just found a couple of things for the kids in their Gift Giving Guide. Honestly, y’all, look at the way the guide is organized…Gift Giving Guide 

Shop by Price * Category * Solution 

I love how it’s organized by price levels so we can select by budget. Easy to shop by category/product type and of by special need solution. I want to get my boy this F-R-A-N-G-O (Bingo) and my girl this Verbal Volley. The cool thing you can also do is click into a product and on the left bar you’ll find more organization, including by teacher, caregiver/parent and therapist. I know. Handy, right? I’m thinking a gift for our favorite special education teacher…maybe something like this Penguins on Ice Math Activity!

If you order before December 18, you can get it by Christmas and spend over $50 and shipping is free.

Follow them on Twitter at @MayerJohnson and Facebook at DynaVox Mayer-Johnson.

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We love that Mayer-Johnson is sponsoring our community and this post! While they do support our community by keeping us going – and we love that – every single opinion is my own. So support our supporters, y’all! 

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