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Tips for Hospitalizations 

Our son, Ben, has been in the hospital many times, usually I forget things, but this go round I didn’t miss a thing. This was a planned surgery, so I had time in advance to consider what to bring to make this hospitalization comfortable for both of us, and I pulled it off seamlessly.  


Here are my suggestions for hospital survival with your child.  Obviously you would need advance notice to work this out, but we also found when Ben has gone through periods when hospitalizations were frequent we kept a bag packed. I’ve also included a separate list of suggestions for supporting a family with a hospitalized child and make a rough situation a little more bearable. 

Packing to the hospital stay with your child:

  1. Extra clothes. Bring more than you plan to need in case of mishaps or stress sweat.  
  2. A bag of healthy snacks in case you end up stuck in the room longer than anticipated. 
  3. A few indulgent treats for those rough moments. 
  4. A pair of old slippers or comfortable shoes. 
  5. Light reading. With frequent interruptions you want something to read that won’t fall apart if you can’t dig in and concentrate. 
  6. A stress ball or stress putty.  
  7. A head lamp or flashlight in case you need to get up in the night. 
  8. A sweater or sweatshirt. 
  9. Easy snacks or favorite drinks for your child. Just in case the cafeteria food is disappointing or you need to pull out a favorite to entice them. 
  10. Load a grab bag with small, wrapped gifts. Use them for prizes for enduring pokes and procedures or for distractions when the child is tired or has pain. 
  11. Medical toys. We have a special stuffed animal that Ben does medical procedures on. A child life specialist can get you tubes, bandages and catheters which resemble those your child has so they can make their special stuffed animal look like they do. 
  12. Electronics and chargers. 
  13. A new water bottle. If you have to entice your child to drinks, sometimes a fun vessel helps a bit. 
  14. A pillowcase, stuffed animal, or blanket from home. 

Preparing a survival kit for a friend whose child hospitalized. (Some of these will be repeats from above). 

  1. Treats and healthy snacks for the parents, it’s okay to ask their favorites.
  2. Light reading material according to their interests. 
  3. A travel size toiletry kit. 
  4. A stress ball or putty. 
  5. If they’re there for several days, a home cooked meal would hit the spot. 
  6. Their favorite coffee or soft drink. 
  7. A hospital cafeteria voucher, visa gift card or gas card.
  8. If you’re familiar and comfortable, offer to sit with the child so the parent gets a brief break. 
  9. Ask if you could bring anything they forgot. 
  10. A distracting toy or game for the child. 
  11. Offer to help with babysitting other children or driving them to school or extracurricular activities. 
  12. Offer to help with laundry or housekeeping. 
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Reflections on Development From 13 Years in

My son Alex was born with Down syndrome. We nearly lost him at birth, so it didn’t take us long to get perspective on the Down syndrome diagnosis because, after all, we had our baby. Down syndrome seemed like a piece of cake next to grieving a lost child, so we moved forward, easily wrapping our minds around his bonus chromosome. 
Within days after he came home from the hospital an OT with Early Intervention called us, made and appointment, and set up services. She introduced us to many simple things we could do to optimize his development. I giddily glommed onto the exercises, I had a golden ticket, and as long as I jumped through all the right hoops my child would become high functioning. 
You’d be hard pressed to find a more dedicated therapy mom. I daily fulfilled my exercise duties, and added in infant massage and baby signs for good measure. By all accounts Alex blossomed. He walked at about 19 months of age, learned signs and words, and his progress became a feather in my maternal cap. I was proud of him and pleased with myself. 
I kept track of all things developmental, counting his vocabulary at 100 words by the age of 3, and many milestones near target. Then a few months later, when he started school, it all changed. He regressed, and struggled in all areas. I redoubled my efforts, determined to rebound from the setback I had deemed temporary, but it didn’t happen quite that way. 
Alex resumed steady development after interventions outside of school and a classroom change, but he never became that high functioning person I had set my mind on. 
Alex has significant sensory challenges and apraxia, and now, at the age of 13, he is right on the border between mild and moderate cognitive impairment.  
You might think I’m disappointed about that.
You would be wrong. 
While I don’t regret being diligent to maximize the potential of my child, I no longer do so with the myopic approach of ensuring that he falls into a category that seems more desirable. You see, Alex is a phenomenal person. He’s compassionate and empathic, he always asks me about my day, he has rich friendships with numerous students at his school. He has a sense of humor and an athletic prowess, as well as resilience and determination.  
Alex is more than his IQ or a random measure like high functioning. He is a multi-faceted person who drinks in life, and contributes to this world. Over these years I have settled into a less frenzied perspective on development. Now I savor and enjoy each stage rather than rushing through it toward an ever elusive goal. I delight in my children where they are while pursuing their best interests and therapies. I enjoy Alex more now, without concerning myself with qualifications like high functioning. 

Before a recent choir concert, proud of his suit. 

A poster and gift from a girl from school. 

Sporting the mow hawk haircut he insisted on. 

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A Little Self Care

I have a huge list of things to do today to get ready for Ben’s hospitalization tomorrow and surgery.   Of course the list is in my head because actual list making is stressful to me, but that’s another post for another day.  Not only do I have all my hospital prep to get done, but I have bonus laundry.  The bonus is because, courtesy of Hirschsprung’s disease, there were two blowout diaper incidents in my bed last night. 

But for now, all my sheets are in the washer, the kids are successfully off to school, and I am cozied up in my favorite chair with a cup of coffee and writing. 

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If the writing part sounds odd, well, maybe it is, but it’s soothing to me, so here I am, jotting down my thoughts on self care as an act of self care.

Self care doesn’t come naturally to me.  I have somehow equated self care with selfish, and selfishness is taboo.  Selfish is a word with an edge to it, used as contemptuously as other taboo words like slut. I cannot think of a name I would despair being called more than selfish, therefore, I threw the baby out with the bathwater and shunned self care.

It didn’t work.

After experiencing a drawn out physical health crisis in 2012, (which I believe was brought on by stress, but that’s a discussion that will have to wait), I began to intentionally pursue self care.  First, trying to even define it, then determining what it would look like for me, then putting it into practice.  I’m still not good at it. 

I practice self care, but it comes at the expense of guilt.  So that is my next step; learning to allay the guilt that accompanies self care. It’s a steep learning curve.

So today I will relax first.  I will take breaks and indulge and comfort myself.  I will run as much as I want to, not a step more or less. 

And this blog post?  It’s probably just a shameless attempt to get people to tell me that I deserve self care and not to feel guilty,  so please feel free to do so. 

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IEP 101

It’s IEP season.  That magical time of year when we devise goals for our kids in hopes of empowering them to reach their maximum potential for the upcoming year.  We prepare for the day with mixed emotions, anticipating goals that have been met and some that haven’t.  We reach out to teachers and therapists to work together to determine the best wording and criteria in each area.  It’s sometimes exciting, sometimes daunting, usually a lot of both.

I have 2 kids in special education, and between the two of them I have almost 20 IEP meetings under my belt.  For most of the IEP’s a few simple practices optimize the process. Obviously there are extenuating circumstances in which the preparation and meeting are difficult, but for the vast majority of the time, these tips have improved my experience.

  • First and most importantly, you are a part of the professional team.  It’s beneficial to prepare for this meeting as you would for a professional meeting.   This includes dressing in appropriate clothing, even when you are tired and your yoga pants are calling your name.  Presenting as part of the professional team and carrying yourself in a businesslike manner will garner respect.
  • Set the tone.  Start out on a positive note, even if you anticipate a tense meeting (I would argue especially if you anticipate a tense meeting).  Think ahead of an item of praise or gratitude which you can use to establish a positive atmosphere.
  • Communicate clearly.   Ask questions, including asking for clarification of any professional jargon used.  Make use of the opportunity when they ask for your concerns to voice as many concerns as you can think of.  Write them down so you don’t forget anything.
  • Connect with the teacher(s) and therapist(s) in advance.  Technically they’re supposed to reach out to you, but don’t hesitate to be the one to make the connection.
  •  Keep copies of the progress reports so that you know which goals have been met, and what the progress is on those that aren’t yet accomplished.
  • Advocate calmly and clearly.  There will be times when you disagree with team members, and it’s natural to go Mama Bear when someone makes a negative statement about your child. Think ahead about how you can respond in an even tone and don’t be afraid to pause and take a few deep breaths or excuse yourself for a moment to avoid losing your cool.  You can’t undo an embarrassing moment after it’s played out.
  • Know your resources and laws in advance.  If you suspect that you won’t see eye to eye with the team regarding the best course of action for your child, research your rights in advance. Wrightslaw is an excellent resource, and local branches of The ARC often offer free professional advocates to help clarify your child’s rights and even attend meetings if necessary.
  • If you don’t agree with the IEP don’t sign it (if you live in an area that asks parents to sign IEP’s) .  Respectfully decline, go home and research your rights.  Once you have your information, write a respectful letter to the school stating your disagreement with the IEP and asking to reopen the IEP.
  • End the meeting on a good note. Even if there’s tension or disagreement, you can almost always find a positive note to end on, or at least thank the team for their time.

While addressing the potential negatives is necessary, the majority of IEP meetings are not negative events.  When approached proactively, you can often set the tone of the meeting and you’re relationship with the team, and accomplish good things on behalf of your child.  Whether this is your first or twenty-first IEP, best wishes!

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The Calm Before the Storm

 
It’s that time. T minus one week to surgery. Let the packing and list making begin. 

Ben has been in the hospital a couple dozen times, (I’ve lost track of the actual number).  I know what we’ll need during our stay and I’m busy preparing for comfort and distractions for both of us.  Plenty of small, wrapped toys for him, and a stash of excellent chocolate for me are topping the list.  It helps to keep busy, busyness staves off the dread. 

The dread. 
It has been over a month since we scheduled the surgery and the dread is a constant companion, always at the back of my mind. When I let it creep into the forefront it nauseates me, so I often keep it tucked away.  I can run away from it sometimes, but a body can only run so far. Other times I let it out and charge it down like the bulls of Pamplona, denying dread of the future the power to steal the joy of the present. 

And then there’s Ben.  He doesn’t have the cognitive ability to know that he’s going to go have surgery next week or what that means.  He can’t understand or dread the surgery. I never know if this is a good or bad thing. He is free from the angst of anticipation, but will be totally blindsided by the pain and suffering. He loves going to the doctor and hospital, heaven only knows why. So I will load him into the van, cheerful and compliant, having no notion of what he will face. 

This is a “quality of life” surgery. That means we have chosen to pursue it because the benefit is worth the risk. It’s not essential to sustain life or health. This brings a whole other set of feelings with it. Questioning the timing, wondering if we could just find other ways around it and skip the surgery. At the end of each day the answers are always the same, yet I continue to rehash the questions. 

So I am making my lists and getting prepared, if there is such a thing. The one thing that I know is that this too shall pass. Come hell or high water (and with Ben’s medical history there’s a significant chance of both), we will get through this and that soon enough normalcy (whatever that is) will return. 

By the way, is it too much to ask that hospitals provide good coffee?

 

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A Gardener’s Musings

This is the 13th year that I have gardened, I suppose that makes me a gardener.  One might think that 13 years into the game I would have my yearly gardening all planned out and dialed in.  One would be entirely incorrect.

For the 13th year in a row now, I am winging it. 

I keep no data about past performance or yields, (or anything else for that matter).  Sometimes I buy seeds and start them in the greenhouse my husband built me. Sometimes I buy plants (I always feel like I am cheating when I do that, but it never stops me).  Every year it’s a whole new experience.  I work hard, savoring the experience and the results, it’s a wholehearted endeavor. It’s also somewhat of a surprise each year to see just how it all works out, which is nearly half the fun.

  
For me it’s not about maximizing productivity or optimizing the system.  It’s more about playing in the dirt, getting nature to provide me with treats, and enjoying some fresh air and a sense of accomplishment as a bonus.

If you want a snapshot of me, this is it. 

I am a hard working, whole hearted person who goes through life, day in and flying by the seat of my pants.

I’ve tried to shore up my inconsistencies and become more deliberate, and with maturity that has happened to a certain extent, but I have come to terms with the fact that I will never be an organized, detail oriented, put together person.  In today’s society that doesn’t jive.  Effectiveness and consistency are key.  It’s ingrained in our culture that we should be driven for success and appearances are important.  But some days, (most days if I am honest), I just don’t give a hoot about all that.

It’s not that I’m lazy (well, maybe just a little bit), it’s that I cannot and do not thrive in a competitive environment.  I accomplish things because they’re worthwhile, not because of deadlines.  I fumble and bumble, but I do it with gusto.  I work in whirlwinds or bursts of productivity followed by farting around and frolicking, nearly all of it on a whim, unplanned and unstructured.

It’s been uncomfortable being a parallelogram peg squeezed into round holes most of my life.

I’m working on wiggling out of that round hole. Rather than repeatedly squashing my nature and attempting to appear round like everyone else, I am striving to be the best parallelogram I can be. 

I got out to my garden today, getting it ready for spring.  I had a lovely time peeping at my asparagus spears just emerging from the ground. They made me smile as did the anticipation of the surprise this year’s planting will bring.

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Just In Case I Forgot to Tell You….

We are a case study of opposites attracting. He’s a headstrong doer, I’m a heartstrong be-er. He takes conflict with his daily coffee, whereas I will go to the end of the world to avoid hurt feelings. He’s decisive, I procrastinate. He talks on the phone and connects with people, I text and keep to myself. 

  
Yet somehow it works. 

We’ve been married almost twenty one years now, and though it took us awhile, we figured out a thing or two along the way. I have to say, we do alright. 

When the neonatologist told us our son appeared to have Down syndrome, it was him that took the lead, accepting the diagnosis and plunging ahead.  I might have floated adrift for quite some time, but Mike rallied immediately, then threw me a lifeline and reeled me in. 

We often have tough decisions to make, and when I waffle he’s strong. When I procrastinate he pushes. When I get bogged down in my feelings, he’s pragmatic. When frustration gets the best of me, he’s diplomatic. When I demure, he asserts.  When I feel, he thinks. 

I’m pretty sure people envision me in the driver’s seat in our complex family, and I don’t think that’s wrong, but if I’m the driver, he’s the engine. One of us wouldn’t get anywhere without the other. 

I don’t know how much I actually pause to appreciate my husband, Mike. Certainly not enough. In case I haven’t said it lately, I notice you. I appreciate you. I value you for who you are and for all you do. I can’t imagine living this life and parenting this crew without you right here with me for every little detail.  In the midst of it, you make me a better me. You call me out when I’m off base, you challenge me to improve myself, but you love me exactly where I am. I know you didn’t ask for this crazy life, but you have stepped into it and mastered it. I love you completely. And just in case I forgot to tell you, thank you. You are a treasure.