What Life Is Like After Having My Son Fight for His Life in the ICU

366
366
2

For me, life after having a child in the intensive care unit is nothing like life before.

Of course, when you bring home your first newborn baby you might feel scared. That’s expected. Will I be able to handle the sleepless nights? Will I be a good parent? Am I doing enough? Am I enough? These are all fears many parent have, but after you experience something so devastating as watching your baby in an intensive care unit fighting for his life, those fears become worse, much worse. The biggest fears you had before have become your reality. The fears you had prior to your ICU stay become minute in comparison to your worries now.

You watched your baby almost die! A warm stream of tears drip down my cheeks just thinking about it. Typing the words makes me feel sick to my stomach, but it’s the truth. It’s your brutal reality. Your child, the child you are supposed to protect, got sick. Very sick. So sick you had to come face-to-face with the most heartbreaking, stomach-sinking, helpless-feeling reality you’ve ever encountered…you could lose him. What if I lose him? How on earth could you ever possibly go on? Those thoughts are short lived because you, as his mom, have to stay focused on his recovery. There’s no time to waste on feeling sad and sorry for yourself. You have to stay positive and push forward no matter how hard it is. Not only for you, but for your family. Your husband needs you. Your baby needs you. You feel you have to be the rock they need. Of course in the middle of it you don’t know that’s what you’re doing. You just do it.

Upon your much anticipated return home:

Leaving the hospital is one of the most exciting and terrifying experiences I’ve ever had. You’re obviously happy to have your child healthy enough to return home, but with that return comes much responsibility. In our case, we had to schedule a meeting with a nurse to teach us how to administer antibiotics intravenously through a peripherally inserted central catheter (PICC line). We also had to be home in time to receive medications from a delivery service as his medications needed to be refrigerated and were delivered in a cooler. We received boxes and boxes of medical equipment upon our arrival. We essentially became our son’s nurses.

Our fears have multiplied immensely. Will my son have a seizure? What if he has one while he’s sleeping and I don’t know? What if I forget to give him is meds? Am I capable of administering antibiotics through this PICC line that goes directly into his body? What if I miss a step? What if I don’t get the line clean enough and I make him sick again? Will my son recover from this? Will we recover from this as a family? Will he ever walk? Crawl? Read? Play sports? Will other kids pick on him and call him names? You might begin to think you’re losing your grip. Am I worrying too much? Am I overthinking things? Everything you used to see as ordinary and not even give any thought becomes an ordeal.

People stop coming around. In the beginning of your ICU stay you might be overwhelmed by all of the people reaching out in different ways. Some people send cards or gifts, others send gift cards. Some send messages through social media and it is damn near impossible to keep up and message everyone back. Many of your responses to the messages might simply say, “Thank you,” or go unintentionally ignored. You probably won’t have the energy to give the thoughtful response you’d like to give. But once you’re home and a couple weeks go by, the phone calls might start to fade and the visitors disappear. I’m not sure if it’s because people believe you’re all good now that you’re home, or if people want you to have your space to get settled back in, but the help, encouragement and check ins…they seem to fade away. It might leave you feeling more lonely and afraid than you ever had before. Don’t get me wrong, people still check in and ask how everything is going and I am unexplainably appreciative of that. What I am saying is, there might be much less of the support you had become accustomed to and it is a huge adjustment.

Reality hits. You begin to process what has happened to your family once you’re home and things quiet down. When you’re in the hospital the nurses take over the care of your child — from changing the baby’s diaper to helping bathe the baby. You begin to feel like it’s not even your baby. Now that you’ve returned home and the nurses are no longer there to help, it’s again your responsibility. It’s not that you want it to be or expect it to be someone else’s responsibility. You just might feel like you’re a brand new mom to a different baby and need to get acclimated to it all.

You might obsess over every little milestone. I can’t tell you what a “normal” mom goes through as their baby reaches different stages in their development or certain milestones because my experience is far from “normal”. But I do know what happens to a mom whose child goes through a traumatic event and she’s told her son has significant brain damage. You are expected to wait (on pins and needles) to see what exactly your son’s needs are going to be. My son is not an average kid (whatever that means). He’s not just a kid “who’s doing things on his own time” or at “his own pace.” It’s so much more than that. He has brain damage. No doctor, specialist or therapist can tell you what his (or your) future holds. Yes, they can make predictions, but what his future  truly holds no one actually knows. I understand people who say he’s going to do things when he’s ready, or on his own time are just trying to help take my worry away, and I love them for that. But in all honesty, the worry will not go away. Those worries are undoubtedly going to be here for a long, long time.

You miss the care and security of being in the PICU. Do I wish to go back into the PICU with my son? By no means. But when you go through an event such as this, you become fond of the sense of security you develop over your time in the ICU when you have doctors, nurses and machines monitoring your child 24/7. Returning home was the most  terrifying thing in my life. My husband and I were obviously overjoyed to have our son healthy enough to come home and not need to be monitored 24/7 but now it’s all on us again. Every sneeze, every breath, every move scares us. We question everything and fear the worst. Are my hands clean enough? What if he stops breathing? Do I know what to do? Can I do this?

 

You might blame yourself. In my situation, my son became ill from a bacteria I tested positive for. Whether other ICU parents’ cases are similar to mine or different, they probably still find themselves to blame in some way. No matter how many people tell you it’s not your fault, you did everything you could or that you caught it early — you might still blame yourself. You hurt so much and you’re angry. Really angry. Why didn’t I ask more questions? Why didn’t I do more research? Why didn’t I know the signs? If I had found the answers to these questions would he be in a better situation than he’s in today? Would he be crawling? Walking? Saying more words?

You might lose yourself. Becoming a mom poses it’s own challenges when it comes to keeping your sense of self or keeping your identity as an individual, but when you have a child with disabilities the challenge is considerably greater. Your every waking moment is structured around the needs of your child. What therapies do we have today? Doctor appointments? Do I have enough time between therapies to shower? And in my case, I left my career to be with him and provide him with the best care possible. I do not regret this decision to leave my work but I do miss it.

What we need from friends and those who support us:

We need you to listen.  Allow us to talk about what happened. If we are talking about it, it’s likely we are ready to. We understand it hurts you to see us hurt and we appreciate that you want to protect us. But, for some of us, talking about it actually helps us process it all. Over time, sharing our story helps us become less sensitive to it. For me, it is therapeutic to share our story as spreading awareness has become my mission in life.

We need you to stop trying to fix our thoughts and feelings. The way we feel is exactly that. We don’t need you to change it. We just need you to allow us to feel it and to work through it. If there was an easy fix or if it was possible to make it all go away with a few conversations and pep talks I’d say “Sign me up!” but it’s not, so let us process it our way. And by talking about it, we are not dwelling on it or holding on to it. Nobody wants to feel this, nobody.

Check in. Ask us if we need help and when we say we are OK (and we will) insist on helping. We put on a face of determination and strength for so long we forget how to turn it off. We don’t know how to accept help. Accepting help means we are struggling, and who wants to admit that? It means we have to set aside pride and show that we’re vulnerable and imperfect. Few people want to admit they need help. But we do need help. We stand together with our little warriors and fight relentlessly for them and push through the tears and resistance in hopes it will pay off and our children will persevere and push through the countless obstacles they will undoubtedly face. And we are tired.

Make us laugh. “Laughter is the shortest distance between two people.” You will never truly understand what we have endured or what we endure daily and that is OK. We would never want you to. But by making us laugh you are showing us life is good. Life goes on. Laughter can be the simplest most powerful therapy you could provide for someone in pain.

Just love us. Love us for who we are and who we have become. Trauma inevitably changes us. Tell us you care. Tell us you love us unconditionally. Tell us you’re there for us and love us for who we are; no matter where on this emotional roller coaster we may be.

We want to hear your story. Become a Mighty contributor here.

Thinksock image by izhairguns

366
366
2
TOPICS
,
JOIN THE CONVERSATION

Being a Mom Is Not Easy, But Talking to My Doctor Made It Better

591
591
0

There are so many tips, tricks and words of wisdom about motherhood that people will try to impart on you. There’s one thing I wish everyone would have told me prior to that I had no idea about: you might feel miserable in the first month. It might not be “the best time of your life.” You might feel like you hate it.

I cried. I cried a lot for the first month. Along with the crying came the guilt. I felt guilty I wasn’t getting this mom game like I thought I was going to. I felt guilty my husband was coming home to a total mess of a human being every day. The guilt wasn’t helping the crying and vice versa.

I’m pretty in tune with my mental health and I knew something wasn’t right (I have a history of anxiety and depression). I wasn’t eating. I was crying all the time. I was having some pretty terrible thoughts about myself and my lack of mom-skills. I was surviving (barely), but I wasn’t thriving.

Breastfeeding was wearing me out. My babe was born three weeks early via c-section and wasn’t strong enough to get a great latch. She wasn’t really getting what she needed from me and therefore, my body stopped producing as much milk. The lactation consultant encouraged me to pump and I was getting close to nothing when I pumped for 30-45 minutes. It was a vicious cycle. I pumped. Hubs fed the babe. Two hours later, we would do it all over again. I felt like a failure because I couldn’t feed my baby. Everything I had read made breastfeeding seem so natural and like it was just going to come easily. It didn’t.

 

Luckily, my doctor could see I was struggling. One genuine piece of advice for you: be honest with your medical practitioners. If you’re having a hard time, say something. Don’t act like you’ve got everything under control if you don’t. It is so normal to think this whole momming this is hard. It is. Your doctor will help you determine if your struggle is just you getting the hang of not sleeping at all while trying not to break this tiny human you’re now responsible for, or something more. On top of talking to my OB-GYN, I spoke to one of the most wonderful humans I know, who just happens to be a licensed mental health counselor and a mom. Just talking to her made me feel like the weight of the world had been lifted off my shoulders.

Post-partum depression is real. It happens. It happens more often than people are willing to say and it can be life-threatening. No one wants to admit their tiny little miracle is making them feel miserable. That does not mean you’re a bad mom. It means you’re human and you’re going through one of the biggest life changes that anyone can go through. Talk to someone.

For me, the first step was to feed my kid with some good ol’ formula. After this, we were both happier. She started gaining weight and I started feeling better. Fed is best, y’all. Less stressed momma and baby gaining weight equal happy household.

Our little bundle of joy is almost 5 months now and she is, literally, a bundle of joy. I soak up every moment I get to spend with her and I love her more than anything. I’m finally starting to feel like I’m acing my mom game and every day with her is a new adventure. It does get better, people. It does get better. Just remember, nobody gets it perfect. We’re all just learning.

We want to hear your story. Become a Mighty contributor here.

Photo by Chelsea Whetsel Photography

591
591
0
JOIN THE CONVERSATION

15 Things I Don't Want to Hear as a Parent of Kids With Disabilities

5k
5k
31

In the last nine years parenting two children with disabilities, I’ve heard my fair share of unsolicited parenting advice and, although well-meaning, ignorant comments. Some comments I can brush off easily; for others, I have come up with answers. Some make me practice my self-control and being kind even when I feel like screaming, “Are you serious?”

Some comments come from strangers and I like to take their initiative as an opportunity to educate. I am a parent who does not mind questions and I am glad to help people understand disability. But that is my choice as a parent. One of my daughters has recently asked me to either ignore those people and walk away, or tell them their questions are rude. She is 11 years old and has cerebral palsy, and we are getting to the age where I need to let her lead the way.

For example, when people ask me in front of her, “What’s wrong with her?” She no longer wants me to say, “There is nothing wrong with her, she has cerebral palsy,” followed by an explanation of what cerebral palsy is. We have reached an agreement, and when people ask this, I turn to her in alarm and say, “What’s wrong? Sweetheart, are you OK? Are you OK? What is happening?” Then I turn to the person who asked and say, “What’s wrong with her, what do you see?” Invariably, the person who asked either recognizes their question was inappropriate and apologizes, or they fumble with their words trying to explain they meant, “Why is she in a wheelchair?” To which my daughter has asked me to say, “You are asking for private medical information.”

The most hurtful comments, for me, usually come from family or close friends. Those comments often feel like criticism on my parenting or they invalidate our experiences, like “You let her spend too much time on the iPad, that’s probably part of the problem,” or “All kids do that, stop worrying.”

And although I do believe most people are not trying to be mean (some might be trying to be supportive) when you hear these comments over and over, it begins to feel demoralizing.

We reached out to our Mighty parents and asked, “What are things you don’t want to hear as a parent of a child with a disability?” Their responses reflected the fact that many of us are recipients of the same attitudes toward disability, and perhaps we are a little tired of hearing these things.

1. “God gives special children to special parents.”

We know we are not special; we are ordinary people. Taking care of your child and doing whatever is necessary to help them is not what “special” people do, it is what parents do.

Although opposite of this sentiment, one parent shared the other side of “spiritualizing” disability when she was told, “You are cursed by the sins of your ancestors.”

2. “But she looks normal!”

Some disabilities are invisible. This comment suggests doctors who diagnose the child are incompetent and the parents are misinformed. Just because you cannot see a disability doesn’t mean it is not there.

One mom said she was asked, “Are you sure about his diagnosis? You should ask for a second opinion.”

3. “That child just needs discipline!”

This is perhaps one of the most hurtful comments, as it implies behavior is a result of poor parenting. It’s saying, “You are a bad parent,” when in reality most parents of children with behaviors are spending hours and hours in therapy and interventions trying to help their children cope with their surroundings and sensory input.

Parents in our community have been told, “I would spank it out of them, my kids would never do that.” “That’s your karma.” “You have not stepped up enough as a parent, that’s why your son has so many issues.” “Can’t you control that child?” “If I had your kids for a week they wouldn’t behave like that anymore.”

4. “I’m sorry.”

Said with good intentions, but it suggests disability is bad. It also suggests we got the “short end of the stick,” or a “less than” child. Our children with disabilities are children first. They are loved, cherished and invaluable. This comment shows pity, which reflects a disability attitude that unfortunately is the most common in our society. We are not sorry. We love our kids. Instead, help us celebrate them!

5. “He is taking too many medications, that is why he has problems.” 

Here is the thing: if a child is taking medications, it is because they need them. That’s all there is to know and all that matters. Personal opinions can be kept private as they are not constructive. A parent should not have to justify why their child is taking medications. It was most likely a long process and something they took time to process and understand. The decision was not made lightly and it was made with the child’s best interest in mind.

One parent shared, “[Someone suggested] I should stop giving her insulin and read about natural things that could help her. There is no replacement for insulin but insulin! Your body needs it or you die. Cucumber water and Chinese herbs aren’t going to help her. Or, maybe she should watch what she eats, what did she eat when she was first diagnosed with diabetes and how much did she weigh? Type one diabetes is not type two diabetes. Research, research, research!”

6. “She’ll grow out of it.”

When my daughter was born with Down syndrome, we even heard this one. Really? Her condition is genetic, as are several other disabilities. People don’t “grow out” of their disability, regardless of what it is. Disability is not a cold to get over with chicken noodle soup and rest. Children with autism become adults with autism.

A mom shared, “Home nursing agency [said] she’s an insurance liability, but gladly call back if she snaps out of it.”

 

7. “I could never do it.”

Do you love your children? Then yes, yes you could. It’s really that simple. Some of us hear it so often that it starts to sound as if our children were unlovable. Our children are as lovable as any other child. It also suggests only “special people” can love them, and we already covered that one: ordinary people love their kids.

8. “Have you considered sending him to a group home?”

Just a generation ago, people with disabilities were sent to institutions and were shut out from the world. This comment is a remnant of those attitudes towards people with disabilities. While there might be situations where this is necessary, assuming parents don’t want to keep their children shows how little our society values people with disabilities. We love our kids, we want them home, we just need support so we can help them.

A parent shared, “[A] behavior specialist told us to consider sending her away [and it would be a] vacation for myself and our family.”

9. “Have you tried giving _______?”

Many of us have heard that, “my friend’s cousin’s neighbor had a child with the same condition and they tried this herb and now they are ‘cured.'” Trust me, if it is a possibility, we have probably heard about it and might have even tried it. We spend hours and hours doing research online — if we need advice, we will ask for it.

10. “Didn’t you know before birth?”

First, this is a personal question. Second, it suggests had we known about our child’s condition we would have chosen to terminate the pregnancy. Worse, it suggests the person asking would never love or want a child like ours. It is offensive. And if we didn’t know, does it mean we had “bad luck” and are now “stuck” with our kids? My children are a gift and a joy. I love them more than life and disability doesn’t change that one bit. My children are wanted.

11. “It could be worse, at least she can walk.”

This diminishes our struggles. Just because someone has more challenges doesn’t mean ours are not valid.

12. “He’ll eat when he is hungry.”

Sure, this works for some kids, but not for all! Kids who have sensory issues may not eat when they are hungry, so we do what we have to do to keep them healthy and alive.

A parent shared this comment made to her: “Just give her some ice cream, she will eat or she will eat if she gets hungry.” This regarding her 100 percent tube-fed daughter. Mom said, “You seriously think I haven’t tried ice cream? Oh, and no, she will starve to death. She doesn’t feel hunger.”

13. “My kid does it, too.”

Another comment diminishing our experiences and invalidating our fears. Even if your kid does it, too, it is not the same.

14. “God only gives us what we can handle.”

If we are going to dish out “spiritual advice,” we should at least make sure it is accurate. Without getting into theology here, this is not true — the sentiment has been taken out of context from a verse in the Bible talking about temptation. As one mom shared, “Sometimes I feel like I just can’t handle it.” I’ve been there, too.

15. “Stop using the ‘autism’ card for sympathy.”

Our child’s disability is not a “card” we play. It means we have to consider our children — disability included — in our planning, outings, gatherings and all aspects of our everyday lives. We do not want sympathy, we want compassion and understanding.

Do you parent kids with disabilities? What comments have you heard? Share with us in the comment section.

Thinkstock image by g-stockstudio

5k
5k
31
TOPICS
, , Listicle
JOIN THE CONVERSATION

The Emotional Resilience I Need as a Parent of a Child With a Disability

75
75
0

I’ve been thinking a lot lately about my own emotional resilience. It is a constant work in progress for me personally.

We all get our strength from different places and there are times when we might feel nowhere close to resilient. Totally floored, out of energy and unable to cope.

Working out how I’ve built, and continue to build my resilience (which wavers regularly, I’m no super human I can tell you), has made me look at all areas of my life.

Nature and nurture definitely have something to do with how we cope in life. There are some studies that show children are genetically predisposed to being more or less resilient. I don’t know if I have that gene or not, but I do know I’m fortunate to come from a very loving family with parents who gave me many great tools along with the love and support I needed to go off into the world. Having my own children now, has shown me how vital they were to my life experiences, and how determined I am to give the same strength to my children. For me, this is especially important for my son, Freddie, who will face adversity all of his life, and for his siblings who will need to be resilient to cope with possible bullying, emotional needs and worries as they grow. I want them all to have happiness.

Life isn’t one big party though, is it? I put a lot of effort and energy into doing lots of very “normal” things, like seeing friends and family, booking the odd holiday, watching trash on TV and reading when I can. My diary is always jam packed. I was very clear from the start I didn’t want disability, Freddie’s disabilities, to define me or to define us as a family. Some days the image of who I was is hazy, but I’m still in there. We all are.

Ask yourself, what do you enjoy doing and what did you enjoy doing?

Disability is part of us but it isn’t everything we are.

It was while thinking about not allowing disability to define me that it suddenly dawned on me (I know this seems strange it hadn’t occurred to me earlier) that I have always lived with disability. My beloved Dad (who died in 2009 from Cancer) caught Polio when he was 5 years old. He had many years of struggle to get well, with all the love and support from my Grandma and Poppa, but it left him without the use of his left arm and muscle weakness in his legs. The reason it didn’t really occur to me is because he was never disabled to me. He was my Dad. He drove, did clay pigeon shooting, played golf, rode a bike, had a fantastic job and tons of friends. He lived life. He taught me to swim, ride a bike, he mentored me in my working life and was a loving Dad. His example of not letting it define him became a part of me. All without me knowing it.

When I was little, my Mum used to give me strategies to deal with the unwanted stares he would receive on holiday around the pool and the stupid comments and questions I might get from classmates and friends. One of the best was, “So, how does your Dad eat food?” Um, well, with a fork like everyone else! When strangers stared, I would smile and wave at them. I can remember doing this as young as 7 years old. It worked. They were on the back foot.

These experiences are ingrained in me and contribute to who I am today.

My other enormous support system is my hubby, Ollie. He has been with me through the absolute best and absolute worst times in my life. The fact we are celebrating 10 years of marriage this year and 16 years together is testament to how fantastic he is. We could so easily have lost it.

I watched my Dad die from cancer. I saw him take his last breath. It’s hard just typing those words, even now. When I think how I crumbled, literally to the floor, Ollie was there. That term people use so loosely these days, “I was heartbroken” over loosing a ring, crashing the car or missing a holiday became a reality for me. That pain is your heart breaking into a million pieces. The pain is like nothing else. I recovered over time and got through it with the support of Ollie, my Mum, family and good friends. I will never get over losing him and every anniversary is awful, but I can go day to day now.

Then I got pregnant (all planned, but still) thinking this would be a turning point. Something positive to focus on and put our energy into. Well, we were right but not for the reasons we thought. At my 20-week scan, we found out Freddie’s brain wasn’t developing correctly. No one, not even after all the horrendous tests we had, could tell us what this would mean for our baby or what the prognosis would be. I honestly thought I had experienced the worst thing I could and uncertainty and great sadness settled in again. I’m not totally sure how Ollie and I made it through, really. He told me a couple of years ago it was so bad in the early days after Freddie was born he thought we would be divorced before long. I wasn’t aware. I wasn’t in this world. I was totally lost for while there. We have worked extremely hard on our marriage.

 

We have no real control over how our children develop. Often, especially when your child has no definitive diagnosis for their disabilities, you often have no prognosis either. I have no control over how Freddie develops. I do everything I can, but I still don’t know. This is one of the things that can make me feel frightened. This became apparent when, as we were jogging along and he was making steady progress and I thought nothing could change now except moving in a positive direction, he started having absence seizures. Getting the call from his teacher and listening to her concerns, I fell apart all over again. I dusted myself down and started to use the emotional resilience I had built over time and started to work on it more.

Resilience is ever evolving. Part of the reason for this is the ebb and flow of life. Nothing stays totally the same forever, even when on the surface it seems like it does.

When you find out your child has a disability, the acute grief can be overwhelming. Just like it was when my dad died. Thats how I knew I was grieving. I had felt that pain before. Acceptance was next.

I built myself up with a support network, self-belief and self-study so I could have a strong emotional resilience, but it needs constant work. I read a lot of books around this subject and one I read recently which I would recommend is, “Option B” by Sheryl Sandberg. Although the author is focussing on her resilience after her husband dies suddenly, leaving her a widow with two small children, the themes were totally applicable to life with a disabled child. After all, you do experience grief in this situation, too. Not just at the beginning, but at different points throughout, like a wave crashing into the shaw and back again.

“You are not born with a fixed amount of resilience. Like a muscle, you can build it up, draw on it when you need it. In that process you will figure out who you really are — and you just might become the very best version of yourself.”  — Sheryl Sandberg, “Option B”

One of the best things to happen was that I found SWAN UK. As a member, I found so much support and I could ask anything at any time of day. It had such an incredible impact on me, I took on the role of Parent Representative for my area. Online support groups can provide a different dimension to your support network. This can be especially important if you are caring alone or don’t have any family to help out.

I used to have a desperate deadline of getting Freddie walking and talking by age 5. You are always told the brain is most plastic during these formative years. The grief came over me again when he couldn’t say anything other than “Hiya.” I was, however, ecstatic he was able to walk with his kaywalker and he was no longer the only child in his class still crawling.

My timelines had to change.

Perseverance is key to building resilience.

I also learned a lot more about Neuro-Plasticity. Yes, the majority of change happens at a young age, but the brain continues to build new pathways all of your life. We still have time. He is proving that every day.

When talking about emotional resilience, you often come across the three Ps: personalization, pervasiveness and permanence.

These 3 Ps are areas I work on, building my resilience as I go.

Personalization

I always felt guilty. I was convinced that Freddie’s disabilities were my fault, even when we received his diagnosis. It has taken me a long time of removing the guilt around this. Feeling something is your fault is different to taking responsibility for your actions though. Don’t confuse the two. Taking responsibility is key to change and growth. Feeling guilt and assuming fault prevents forward movement and acceptance.

Pervasiveness

This is a state of feeling/thinking that this one event will spread to every area of your life. This is the area I had to, and still have to work on, not to let Freddie’s disabilities totally define my life or that of my family. Don’t loose yourself.

Permanence

Believing that one situation, one event, one state is forever is mentally debilitating. As a race, we are built to be constantly moving forward. In the early days I used to sob and say, “This is it now, the life of a carer. What if he can never do anything for himself. What if he never walks or talks etc. I will be like this forever.” It is true Freddie will be disabled all his life, but there are still changes. Change is key to the reason we need to practice building our emotional resilience as we go.

Follow this journey at Aimee Mann Mentoring

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Tishchenko

75
75
0
JOIN THE CONVERSATION

My Daughter Needs Medicaid, We Are Holding Our Breath

84
84
0

She sleeps without a care in a world. In an hour, she will get up, test her pee, take her pills and start bugging me to go swim. My 8-year-old daughter had a kidney transplant almost three years ago. Her responsibilities for now include drinking enough water and helping Daddy put her pills in the case. In just nine more years, she’ll be in charge of managing her own healthcare and that terrifies me. I’m awake at 7 am, drinking coffee, reading the paper and watching the news — waiting to see what’s going to happen with the healthcare bill — and hoping she never has to sit and watch the news to find out her financial future.

The year before Lexi was born, we lived in this crap hole apartment with a neighbor who always asked for a ride to West End to, “get his mother’s medicine.” There is not a single pharmacy in this part of town. He did a lot of crack and I wouldn’t let him in my car. I lost my job because I didn’t have health care to get a doctor’s note for being sick. We went on food stamps and I went to 100 interviews but no one would hire me and my belly. I couldn’t even get a minimum wage job at Dairy Queen.

We worked our butts off over the years to climb out of it. I finally got a job a month after my second daughter was born and we moved before I had our youngest, the transplant kiddo. Not having enough money for groceries is a position I never want to be in ever again, and if we’d had health insurance we never would have ended up there.

When Lexi had her transplant, we paid a $950 copay for her first month’s medications and then she finally got approved for Medicaid in addition to our regular insurance. I wish I was exaggerating when I say it has saved us over a million dollars. We meet our deductible by February every year. Losing Lexi’s Medicaid would be quite the hit.

But I have to sit and watch a group of privileged Americans decide my family’s financial future. We will not go back to poverty. I wish we had decision makers who had actually experienced something in life that the regular American does. They have no right to be making such thoughtless decisions for my sleeping 8-year-old’s preexisting condition.

Beautiful girl, I hope you never have to worry about how you will pay for the medications that keep you alive.

Don’t cut Medicaid.

Is this the “American Dream” we worked so hard for?

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Creatas Images

84
84
0
TOPICS
JOIN THE CONVERSATION

Dear Teachers, Here's How You Can Help My Kid Avoid or Cope With Meltdowns

18
18
0

I don’t know about you, but there have been times when my kids work so hard at “keeping it together” at school, that by the time they come home they are not feeling regulated.

Also, home is safe, and home is where you can finally show what you are feeling inside.

A loud noise can tip off the scale. A snack might have the “wrong” texture for an already tired body.

For my daughter with Down syndrome, we were fortunate to work with educators who were willing to listen to her sensory needs. My daughter had a card with the word “break” spelled on it. If she needed a break, she would hand the card to her teacher, who would then take her to a different room where she could get regulated. Sometimes she used a therapy swing. Sometimes she chose to wear a pair of noise-canceling headphones. Sometimes she just walked the hallways for a little while.

I believe most teachers want to help our children be successful at school, and success means helping our children feel regulated.

We reached out to our Mighty parenting community and asked, “What can teachers do to help your child and prevent a meltdown?” We also asked our autistic community, “How can/did your teachers help you handle sensory overload and/or meltdowns?”

If you’re an educator, we hope these answers help you further support your kids. If you’re a parent or a student struggling with teachers understanding sensory needs, maybe they’ll be receptive to these ideas.

Here’s our community: 

“The best thing a teacher can do for my autistic child is to be patient, understanding and observant. Be on the lookout for clues that my son is becoming overwhelmed before he actually gets there. This will usually present itself in the form of increased or more intense stimming. Once you recognize he is feeling uneasy, do something to help. Offer him a break to move around or to go to a quiet place.” — Sarah B.

“Explain fire drills before they happen and have headphones (if appropriate) in an easy to access location near the exit. Many teachers enjoy decorating classrooms with bright colors and posters. This can be overwhelming to students in a new environment. Choosing neutral colors and slowly adding to the classroom environment can prove beneficial to those who experience visual sensory overload. Provide movement breaks in the beginning — sitting for long periods of time can be tough for kids at any time, let alone in the beginning of the year. Most important, invest time in the beginning of the year by truly getting to know your students — know their interests, their fears. This will help in more ways than could ever be listed. Many issues can be solved before they occur by knowing your students and building on their interests and strengths.” — Megan G.

“Get to know each of your students on an individual basis, and communication with the parent is vital to maintain an environment that each student can thrive in. Watch for key signs of over-stimulation before a meltdown and have a plan to redirect to a quite place or have items ready for relaxing and de-stemming. Have a visual schedule and keep a very structured classroom. Don’t keep changing things. Keep the room walls simple with lots of visual prompts. Most important: read and re-read the IEP and stay on the same page with open communication with all the teacher aids in your classroom. Make a structured schedule for each student based off their IEP. Lastly, have a questionnaire for your parents, send an email or meet with parents before school starts to find out more about your student. Also, find out the expectations of your parents for their child to help the school year go smoother for everyone.” — Danielle W.

 

“Most of the time my son’s meltdowns are triggered by conflict with other students or noisy, chaotic environments. He can misinterpret tone of voice, social cues, body language, intent. The best thing a teacher can do is to closely supervise and monitor, not only the classroom, but unstructured or transitional times as well.” — Mary M

“It’s important for teachers to remember that school is a new environment and new experience altogether, and coping strategies the child uses at home might fly out the window at school. It will take some time to adjust, and get to know the child’s personality, before you will get a sense of triggers and warning signs. Meeting with the parents beforehand is one of the best things you can do. They can give you a basic set of warning signs. Unfortunately you might have to learn the hard way, meltdowns will inevitably happen early in the year. My best advice for preventing or dealing with a meltdown is to scale back. Whatever the situation, scale back and remove the pressure. We are selective about what classroom rules to enforce at the beginning. For example, he doesn’t have to stay in his seat if that’s the current problem, but he does have to stay in the room, that’s nonnegotiable. Give them some agency, some sense they get to make their own choices, and within a few weeks they will adapt. This opens the door to better learning opportunities as they begin to focus on the schoolwork and move past adjusting to the new room. But it takes some time, and patience, especially in the early years of school.” — Jessica W.

“Last year the classroom teacher met with us before school, before back-to-school night. She answered all of my child’s questions — one hour worth of questions. I could see the anxiety and fear leaving her body. It was the best start we have had in four years.” — Jessica M.

“My 11-year-old says, ‘watch, listen and understand.’ Watch for bullies, environments getting too noisy and lots of fidgeting. Understand that some days will be better than others and that the teachers can help make things easier by being calm, offering quiet space and setting the tone for no tolerance of bullying.” — Dee N.

“Read the IEP or 504. I know teachers have many, many students and many, many things to do and keep track of but when accommodations are there, it is for a reason. That reason is to hopefully help everyone have a successful year, student and teacher. If the child hates being touched and hates having attention centered on him, please please please don’t touch him and constantly call out his name in front of the class.” — Melissa B.

“When I was in school the best thing teachers have done for me is notice when I might be feeling overwhelmed and ask if I need some time to myself.” — Jessica C.

“Have a box with different items such as stress balls, sensory balls, emotion cards and other things that can help autistic children calm down.” — Hannah H.

“Let him know being overwhelmed or frustrated is OK.” — Sarah C.

What would you add? Let us know in the comments.

Thinkstock image by Wavebreakmedia

18
18
0
TOPICS
, , , Listicle
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.