Author: SerialAdopter

Callie’s Road

SerialAdopter4 Comments

Our girl Callie turns 18 this week. Here’s a short synopsis of where we’ve been and where we’re going with our girl. The road has been long and arduous but now we have renewed hopefulness.

Callie arrived to us via the Texas foster care system. She was 2 yrs. and 9 mos. old. She was a micro-preemie born at 23 weeks and weighed just 1 lb. 6 oz. and spent her first 246 days in NICU. We were told she was abandoned in the hospital and so had no one to visit her or care for her but hospital staff which, we were told, were too busy to hold her or comfort her. Her list of medical issues is vast.

  • Respiratory Depression
  • Acute renal failure
  • Retinopathy of Prematurity
  • PDA – Patent Ductus Arteriosus – surgery to repair
  • Cor Pulmonale – enlargement of right side of heart
  • GERD – Gastoesophageal reflux disease
  • Pulmonary hemorrhage
  • Apnea of prematurity
  • BIH – Bilateral Inguinal hernia – surgery
  • IVH – Intraventricular Hemorrhage or brain bleed Grade III

It’s a frightening list and she also had a G-tube placed in her abdomen for liquid feeds before leaving the hospital.

All this she endured without consistent family by her side. We were told visits happened for awhile at the beginning but tapered off and eventually stopped. There are a million reasons why that could happen but all that matters to me is that Callie survived all that trauma alone and that is not something you ever get over.

Trauma takes it’s toll – forever. It shows itself in a variety of ways. It saddens me that there are many people think those who’ve suffered trauma should “just get over it”. I have no trouble reminding them that this will remain with her forever and you’re lack of patience/understanding will not make it go away. She has huge issues with sound sensitivity. It makes sense to me that with all the hospital sounds – beeping, buzzing, alarms – that bathed over her during those 246 days now cause any sudden sounds to bring her trauma to the forefront. For a long time she had a “fight or flight” response. Thankfully we found that noise canceling headphones and those help a lot with that, but sometimes she simply has sensory overload and can’t stop her response. It’s our job as caregivers to sense that and help her avoid being overloaded. Sometimes it’s possible and sometimes we are blindsided by it. We do our best and try to make sure others who care for her do as well.

During our first years with her we were able to stabilize her health with a progressive team of medical professionals especially a doctor that helped us heal her gut – long before gut health was a thing. Callie got off all her meds, and she came with many. No more asthma or gut issues.

Medically she was stable, but she had many other struggles to overcome. Although she craved human touch, she could barely stand to be held at first. Slowly but surely she tolerated it and eventually she sought out hugs and laps to sit upon. Now she seeks physical touch, maybe not always appropriately, but I remind myself that it is better to teach appropriate touch than to have a child who can’t stand to be touched.

She was neither walking nor talking when she came. Walking was thwarted in her foster home due to being cribbed and car-seated most of the time.  She accomplished it quite quickly once she was freed. Talking on the other hand was another story. She wasn’t just not speaking she wasn’t making a sound – any sound. She didn’t yell, scream, cry, babble, nothing. There was no purpose in sound making as there was no one to respond to her sounds ad thus she had stopped.

Fortunately we found an amazing speech pathologist who worked with her and taught us how to encourage her to make any sound, then specific sounds, words, sentences and she was on her way.  This is not to say that her language and speech skills are at her age level or that everyone can understand her at all times, but she can communicate her needs most of the time. The most difficult language issue we have with her is that she isn’t, thus far, able to answer the “Why?” question. So when she does something harmful to herself for instance if we ask – Why did you cut your lip? – her answer is – Because I cut my lip. For me that is the most difficult part because then we’re playing mind reading games and that’s never accurate.

Over the last 8 years, basically since puberty started, her behaviors have become more severe, less manageable. She has become self-abusive. She cuts her fingers, lips and other body parts with scissors. She bites and picks at her lips and fingers. She has little tolerance for other’s sounds – chewing, coughing etc. She is more insistent, repetitive, aggressive in her requests well demands. Her attention span shortened as well as her patience. She threw herself off of a speeding ride at an amusement park miraculously without severe harm. Terrible road rash, but no broken bones or stitches. It has become unsafe to take her to many places.

She is on three different medications for attention, impulsivity and mood issues. All have helped and some were tried but the side effects weren’t tolerable. They help some, but still her anxiety levels soar and often taking her places seems like a long-shot gamble that could go all kinds of south – and have. I have had to chase her down and lie on top of her to keep her from running in to traffic when the “fight or flight” adrenaline surge hits. Even at home when we have company or our grandchildren over we are on constant vigilance. It is exhausting. For all of us. I am now 63 and don’t think I could catch her anymore if she ran and we just can’t care for her forever and living choices for someone with her needs are limited.

In August our state added Autism to the list of qualifying conditions for the use of Medical Cannabis. Callie just received her official diagnosis of Autism one year ago today. We didn’t need convincing. We’ve read about families who have had great success with their kiddos and frankly we had nothing else to try. Behavioral therapies, sensory diets, gluten-free/dairy-free diets – we’ve tried just about everything. Again, there was some success or improvement with each one but not enough.

We went through the process to register her and last week saw the dispenser. We started her on low dosages Friday night. She slept like a log and has every night since then. Not at all usual for her, but lack of sleep seemed like a minor problem to us amongst all the other concerns.

At school on Monday she had her IEP and only a couple staff members knew and every one who didn’t wanted to know – what was up with Callie today. She was a completely different kid. She was calm and relaxed – words NEVER used to describe our girl. They even had a fire alarm and she calmly left the building before it went off, which is in her plan but she’s never happy or calm about it, and waited it out. They could not believe it.

We were extremely hopeful about it, but it is a far quicker and effective treatment than we could have hoped for. And yes, it is early to jump to the conclusion that this is the silver bullet, the panacea. The thing that makes the world safer for Callie and Callie safer in this world. But hope was elusive before and now feels like there may be cause for it.

Now, perhaps there are those who have strong negative feelings about medical cannabis. That’s fine. We also had a daughter who had severe cerebral palsy – intractable pain – over the last few years of her life. Nothing helped for long and it was excruciating to witness. How I wish we’d had cannabis for her. How much better her life might have been, shortened or not, if she’d been able to live it without constant, constant pain. Unless you have lived through or with the hopelessness you feel as a parent caring for a child who is clearly living a pain-filled life with no relief and no hope for relief either physically or emotionally then perhaps you can’t understand and if you can’t I’d ask you to reserve judgement. We want Callie to live her best life and I was not willing to say no to anything that might help.

If you are on board with the medical use of cannabis I’d ask you to advocate for it to become legal throughout the US because until it is legal we have to pay out of pocket for it , about $200 a month, as it’s not covered by medical insurance like any other medication. We can have her on all the psychotropic drugs we could get for free. That just doesn’t seem right to me, but as tight as our budget gets, like any other parent we will find a way to cover what is necessary for our child’s health and well-being. I also know we have resources other parents may not have and so they can not take advantage of something that might change their child’s life for the better and that is not right.

Now we are days away from her legal adulthood. We have filed for legal guardianship, as we have for 5 others in our family, and will go to Social Security to file for disability and listen to the interviewer ask her a million questions she can’t answer – Do you own land? Have you worked for the railroad? – I mean it’s a ridiculous list of questions for a kid with reams of paperwork that’ll tell you she clearly qualifies. We’re also not allowed to answer for her so…it’ll be a story I’m sure. If they let her start talking about roller coasters, an obsession – we could be there for awhile.

 

 

 

Senior Pictures

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Last weekend we had senior pictures taken of our two graduating girls. They are 9 months apart in age and became sisters when Callie was 2 yrs. 9 mos. and Little Sis was 2 years.

Quick note about the names of my kiddos. I will be using real names mixed with pseudonyms. It may not make sense as people who actually know us will know who I’m talking about but that’s what I’m going to do. I will be using Callie’s real name as I plan to blog about her often. There are reasons as to why that is acceptable to me and reasons as to why I won’t do that with other family members and that’s enough said.

My girls are different in so many ways. Callie has intellectual disabilities, autism, anxiety etc. She had a real difficult start to life as a micro-premie who was essentially abandoned in the hospital. She’s had a really tough time, but she persists like no other. She is truly amazing.

Little Sis was with us at 6 weeks, was cared for well before she came to us which is not to lessen the trauma/abandonment that all adoption may bring, but she is an overcomer like no other. Don’t get me wrong, it’s not been an easy road, but she is in an amazing space now and we are so very proud. She is smart, sassy and super secure in who she is.

Taking their pictures was bittersweet for several reasons. Whenever your kid is taking senior pics you just can’t believe that time is here. No matter how many times you’re here and we’ve been here 10 times before, our first was our long term foster son in 1988.  Also bittersweet as the last girl we graduated was our Shannie whose senior pics popped up on my Google “Rediscover this day” – today. She died about 7 months later and senior photos, let’s face it eventually they’re not all that important, but these….these were never more important to me. Especially important is the photo of the three of us – her dad and I. Neither one of us was prepared for a photo but I was never happier to be photographed in my less than perfect glory because it’s the last picture of the three of us that we had taken where she was happy and feeling good.

In homage to their big sister each of my girls wore a special necklace of mine in their dress up outfits picture that Shannon also wore. Little sis who isn’t particularly sentimental also wanted to be sure they took a picture together, holding one of Shannie’s stuffed lambs, sitting in front of Shannie’s apple tree. My heart was full seeing them in that space honoring their sister.

I must also mention that our photographer is a young woman who has taken all our family photos and was also Shannon’s personal care attendant for years. I’m forever grateful for her and her gift of photography which captured our beautiful girl and her smile – the way we want to remember her.

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More than Serialadopter

SerialAdopter1 Comment

I have thought and thought about returning to blogging. A couple of the sticklers I wrestled with, still wrestle with, is how to protect the privacy of members of my family and rethinking my own identity. When our Shannon died almost 3 1/2 years ago I changed. I began to change over the year or so before her death as well let’s just say there was a lot of family stuff going on both before her death and since then. Some of it is shareable and some of it is definitely not my story to tell. I want very much to honor that as well as to speak my own truth and I wasn’t sure how I would I do that.

I was also not at all sure I wanted to continue to use the name Serialadopter for a couple reasons perhaps most importantly because my view of adoption in general has evolved. But, the reality is I am a serial adopter. I’ve adopted 9 people and caring for them has been the driving force in my life.

I always know I am second best because the desired scenario for any child or parent is always that they would be born into a family who planned for them, was prepared for them and even if they weren’t either planned or prepared for those parents would have the support needed to be the best parents they could be. Specifically for the majority of our children, all would be born healthy and all parents would be supported in caring for them. Why would we want anything less for the children in this world? I try to be the best second best I can be and I’m ok with knowing that.

That being said my focus will be different than it was previously. When our Shannon was still alive we knew we’d care for her until we simply could not anymore but now we are getting close to having the last of our 5 children reach adulthood. Three who are still at home will need care for the rest of their lives and we are trying to figure that all out and hopefully, eventually, what life after daily caregiving looks like. Right now it’s totally a pipe dream.

I’m also hoping to share specifically about our nearly18 year old daughter who was just officially diagnosed with autism this past year and her/our struggles with mental illness/behavioral issues and what we are trying and have tried. Which, in short, is everything. More on that later.

Again, the past 4 years have changed me in ways I never imagined. Mostly, in spite of the painfulness of it all, for the better. At least I think so.

 

 

 

Someday the Dream might be Realized

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Monday was Dr. Martin Luther King Jr. day and it’s always a day of reflection for me, both because of my personal experience as a young child hearing Dr. King speak, then after waiting in a long line having the opportunity to shake his hand. Mother told me to look him in the eye and never forget and I never have. Who could have imagined then that I would become a white mother raising black children and that we would still be hoping that someday his dream might be realized.

With all the racial events of this past year, especially the Black Lives Matter movement, I’ve given a lot of thought to white privilege. As my children become teenagers I often think about their safety in a society where the violence and death of black people does not seem to be as concerning as of those who are white. It’s certainly not a new concept, but frustrating when you grew up in a time where you complacently thought, maybe just hoped, we were past all that. Ignorant and naive because of my white privilege. I wasn’t living it every day as my children are beginning to.

My black children have lived in a white privilege bubble of sorts. Because they have white parents, they weren’t scrutinized as they shopped or made friends or perhaps in school once the color of their parents were known.

As they have grown older and moved away from us, venturing out in to the world alone, that is changing. I often now walk a few steps behind them to see how people view my children. More than once my husband or I have been there to step between them and a store clerk questioning their motives when touching merchandise or merely walking in a store. Our white privilege bubble won’t always be there, and I grieve for the times they will have to verify their right to shop, or simply be wherever they are.

We know that black young men, children really, are viewed as adults at a far younger age than caucasian children. My tall 12 yr. old son is no longer seen as a child. I learned early on to refer to my son as little man, both because historically the word “boy” has been used to denigrate black men’s manhood and because I wanted him to think of himself as a man from early on.

I know I haven’t done the best job preparing them for what is to come, how can I when my mere existence  has shielded them from conversations that might have come about naturally in a black family’s life. They are often annoyed by my desire to have these conversations and I get that too. Who wants to believe there are those who look upon their color with suspicion and fear and oh, how I wish we were much further along in the struggle Dr. King worked to end. To believe that struggle is over is to belie reality and for my children’s sake that is something I can not do.

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Prayer – An Instrument of Peace or a Weapon

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Yesterday in a store parking lot I was chased down by a woman who asked to pray for my son. I had Chad with me and my grandson who is 8 mos. I knew she meant Chad and assumed, perhaps, she had a soft spot for people who have Down Syndrome.

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She proceeded to tell me there was a website that tells of people being “healed” down to the cellular level with Down Syndrome. She touched him, said a one sentence prayer and quickly went on her way. I was so stunned I didn’t say anything. Here’s what I wish I’d have said.

You addressed me and talked over my son and by doing that you immediately                 demonstrated that you did not consider him a fully human person who should be  spoken to directly as any adult should.

By telling me you wanted to change him to his cellular level you told me he was a mistake. From the moment of conception you think God created a mistake.

You never asked me if I thought Chad needed to be “fixed”. By the way, I do not. He          is happy, healthy and his family loves him exactly as he is. We would miss much of             what makes Chad, well, Chad if you had your way.

We know many other people do not find him worthy just as he is and show it in many        of the same ways you did, but you thought you were being kind and helpful and                 Christlike which, to me, makes it even worse. You used prayer as a weapon to inflict           emotional pain rather than an instrument of peace.

If you were bound and determined to “hunt” down someone whose child had DS, I’m       so grateful you chose me. How devastating it would be for young parents learning and    coping with an unexpected diagnosis to have you approach them and tell them if                they just prayed they could change it all. I know a little something about people                  implying if only  you prayed harder, or the right way, your child would get better. You      create more pain than you  will likely ever know.

If I would have had to explain to Chad what our encounter was about it would have          broken my heart. How do you tell someone that this stranger thinks you are imperfect      and need to be fixed. On the other hand, had he understood, I suspect my words would     have come to me quite quickly to immediately counteract her hurtful words.

It frustrates me to think she is likely excitedly telling her friends about our encounter without realizing the consequences of her actions, but maybe this will stop someone else from making the same mistake.

Now, excuse me while I go enjoy a superhero movie with my Chad. You haven’t lived until you see the joy he takes in his superheroes. Perfection.

Dear Typical Mom

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Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

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You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl

 

Aside SerialAdopterLeave a comment

Shannon is 17 today and today truly was mostly about her. Not in a normal 17 yr. old spa, pedi/mani out to lunch kind of way though. Shannon had an appt. for a wound check on her surgical incisions which turned in to a major event. Not the actual appt., but getting everyone on the same page about what this appt. was about. Her surgeon was unavailable and we were told her pediatrician could just check it and then we’d see the surgeon in another 3 weeks for X-rays and such. Well, nothing is that easy. Today between the two of us we made or answered no less than 14 phone calls. It was ridiculous. The pediatric office was freaked out about checking on a hip replacement wound, apparently they don’t see those like ever, but a surgical wound should be a surgical wound I would think.

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Happy Birthday to Shannon!

She has two incisions. One for the hip and the one inside her leg right at the top for her adductor tenotomy. That one has given us concern as it lost it’s steri strips, which hold it together, only about a week after surgery. We’ve watched it closely and called and described it. Today the pediatrician took a sample to check for potential infection. The last two phone calls of the day came simultaneously with Mark on one phone and myself on the other about the exact same appointment which we will have tomorrow AM with one of the surgeons associates. Everyone is now sufficiently freaked out about follow-up that we have to drive quite a distance to double-check on everything.

Part of the craziness this morning was the constant back and forth between the pediatrics office trying to decide if they could handle it or not. The last call was only 45 min. before her appt. and Mark informed them that we can’t just run out the door with her, it’s quite the process.

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First this vest has to go on and it zips in the back. This is to attach her to the chair itself as it only has a seatbelt. Her usual wheelchair has all the straps for traveling that are constantly in place.

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There are then two straps that go between her legs and anchor her to her chair.

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Next the wheelchair and bed are placed side to side and the bed is lowered so she can slide from the bed to her chair.

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Next the transfer board is slid partially under her body.

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Then she slides right over on to her chair. The set up is a bear, but the actual move is simple.

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On Sunday we will have a little open house to celebrate with friends and family another year with our girl. We have great hopes for this next year. A new wheelchair will be coming this summer and this new hip will be tried out. So, happy birthday sweet girl. You inspire us every day to keep life in perspective and never, never take life’s little pleasures for granted. Every day is a gift.

Play Date at the Mall

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It’s happened. My 11 yr. old – I don’t like the term tween, because she’s still a kid, maybe when she turns 12 she can be a tween – had a “play date” at the mall with a couple friends.  This is surprising for one very specific reason.  My daughter HATES to shop.  Apparently, spending time with friends trumps her great distaste for all things shopping.  She had earned $15 by doing chores and they were going to have lunch together.  

We had worked it out that we would meet every hour or so and check in.  My kid doesn’t have a phone – not in the family budget – but both the friends had a phone with them.  Two times I ran into my girl she was sitting at a table watching the friends’ bags and purses while they shopped.  She was completely content just hanging out. When Ella left the mall, she had no bags, just an empty wallet in her pocket.  The other girls both had a couple items they had purchased.

When I queried Ella on where her $15 went she said lunch and the arcade.  That seemed about right.  It does, however, blow my mind that she spent $15 with absolutely nothing specifically to show for it.  Her older siblings will, no doubt, once again rail about how much more privilege these younger kids have than they did.  They would be right.  Our pennies couldn’t possibly be pinched any tighter when they were growing up.  We didn’t have a cent to spare just to feed and secondhand clothe those kids.

Walking around the mall for 4 hours – not ready just yet to drop 11 and 12 yr. olds off at a mall by themselves – I had plenty of time to shop.  I went into many stores and even picked up some items, but then put them back realizing I really didn’t need them.  I did end up buying a few $2 and $3 shirts and some Easter clothes, but the best thing I bought was  lunch – for myself – by myself.  It was a lovely hour long lunch with just me and my computer and I thoroughly enjoyed myself.  

What I said about my girl having absolutely nothing to show for her $15 was incorrect – she got a fun afternoon filled with memories of hanging with friends.  All too soon having so much free time that you can just hang around a mall for four hours with friends and no time frame will come to an end.  So, yes she got plenty for $15 and it was definitely worth it.

French Fries With a Side of Flirtation

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Today’s after church lunch at Culver’s, a fairly regular event, was quite amusing – to us and those observing us.  For some reason Shannie often cries when we arrive somewhere other than home until she settles in and decides to stop – generally 5 – 10 min. tops.  Today she was pushing 10 minutes, but finally settled.  That wasn’t the amusing part.

First Ella, Jacob, Christian, Callie and Jacob thought they’d sit at one of the high tables.  So, we grabbed two of them next to each other.  All this time Shannie is crying and people are staring.  Then Callie decided she didn’t want a high table and I convinced her to wait to move after her dad returned from the rest room.  Then we moved and Ella, Jacob and Christian stayed put.  Thankfully before our food arrived Shannie settled in and stopped crying and the staring became less obvious and more furtive, my preferred type of observation.

When the food came everyone settled in some and all was calm.  Pretty soon I noticed Christian was grinning ear to ear and glancing over to the counter gesturing and nodding his head.  Pretty soon he was leaning back with his hands behind his head and adjusting his shirt.  Jacob comes over giggling about how he’s trying to impress some girl.  Christian kept saying, “What? What?”  like – it’s all good, nothing going on here.  We all got the giggles and Ella was rolling her eyes and moving away from him.  It just became hilarious.  I don’t know if the girl said “hi” – she certainly didn’t approach him in any way.

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I teased him a bit about it in the van and when he got home he told Jacob she was his girlfriend.  I’m pretty sure that’d be news to her and he didn’t seem to know her name, so that makes it kinda tricky I’m thinking.  It was so funny to watch him attempt to impress her with his somewhat limited flirting skills.  Gotta admit – Christian had more game than a lot of 14 yr. old boys who’d never have the confidence to even look in a pretty girl’s direction.  She may not have given him the time of day, but he still enjoyed every second of the experience.

Medically Fragile Kids are Students First in School

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Yesterday was Shannie’s IEP.  Mark went as we had some concerns and I knew he would make the case in a non-emotional, calm, cool and collected way. He is just so much better at getting the same result with less emotion involved in the process then I am.  I’m always so grateful to have a partner in these situations.

Shannie is in a classroom geared for kids who are classified as medically fragile.  She definitely qualifies, but only in the technical sense as far as I’m concerned.  She hasn’t been in the hospital for illness, always pneumonia, in over 10 years.  All other times were scheduled orthopedic surgeries.  Compared to many kids in this classification she’s on the milder end – no trach or ventilator – for which we are super grateful for sure.

Our main concern was that Shannie be treated as a student at school, not a patient, and sometimes it seemed as if that line was blurring.  Often her notebook came home with oxygen stats or temperatures on days when she was not the least bit sick.  In fact she’s maybe missed 3 days of school this year due to illness, general illness,  not life-threatening illness.

I tend to prepare myself for a possible fight in these situations, but more often than not, when we lay out the issues and clarify our expectations all is well.  In this case, Mark shared with her staff the anxiety Shannie feels surrounding medical situations and whether her anxiety was playing in to what they perceived as illness at school.  Everyone seemed surprised that she responded with anxiety – to the point that versed, an anti-anxiety med which also produces amnesia, – is given to her as soon as she enters the hospital for the injections she receives four times a year under anesthesia.  She has been known to raise her temp. several degrees when she is anxious.  This is why I was so concerned that the hyper-vigilance over her medical issues be dialed back.  She has enough real issues that have to be dealt with, let’s not pay attention to anything that’s not a real issue.

Shannie often freaks out people who are not familiar with her frequent coughing, rattling in her upper chest and occasional gagging.  We, who are familiar with her, know for Shannie, this is normal.  It is always upper, as in back of her throat, respiratory stuff.  It is very rarely actually in her lungs.  Her “normal” takes some getting used to and absolutely requires some relaxation on the part of her caregivers.  You can not get worked up over every funny sounding breathe or muscle cramp/jerk, seizure etc. or you’ll make yourself sick with worry.

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Yesterday was a great example of the purpose of an IEP, in my opinion.  It helps clear the air and get everyone on the same page.  Ultimately, with Shannon, we are the ones who will pay the price long term for whatever decisions are made regarding her health.  Our goal has always been for her to be comfortable and experience as much in the school setting as possible.  When she is a student first and a student with some medical issues second that goal is a lot more likely to be achieved.