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12 Things I'd Like People to Know About Being Special Needs Parents

As a special needs parent, I frequently hear phrases like, “You are so strong,” “I don’t know how you do it,” and “Only special people are sent special kids.” I feel like I’m always telling people I’m no stronger, no more capable than they are. In fact, I often feel like I’m less capable! I was not gifted with special abilities when I became a special needs parent. I am a mom, like any other mom. Struggling along with limited resources, trying to give my kids a good life — the same things most mothers are doing. I also don’t want to downplay the challenges that can come with parenting children with special needs. There are added challenges. But we are all trying to do the same things. And none of us can do it alone.

In that spirit, here is a list of things I’d like people to know about our lives as special needs parents.

1. We love our kids. We love our kids just like you love yours. We want our kids to succeed. One of the things good parents try to do is give our kids the tools to succeed in life. We want our children to be happy.

2. We celebrate milestones. Baby’s first smile, the first tooth, rolling over for the first time, and those first steps are big moments in parents’ and children’s lives.

3. Like every parent, sometimes we make mistakes. Parenting is tough. I don’t know a single parent who hasn’t done something they wish they could take back or amend.

4. We need a tribe. I fully believe that parenting is not meant to be done alone, or even just as a couple. It can feel lonely at times, and having people we can ask advice or vent our frustrations to is so important.

5. We need a break sometimes. We all love our kids. And we all sometimes need a break that doesn’t involve the bathroom.

6. We have strengths and weaknesses. I’m not a great housekeeper. I’m also not great at entertaining my kids. But I’m a decent cook, and I love exploring new ideas with my kids. I have exceptionally organized friends who don’t cook. I have friends who make the most Pinterest-worthy lunches I’ve seen. We all have that one friend whose house is always immaculate. Maybe that’s you! Everyone does something well. No one does everything perfectly.

7. Milestones can also be different when you have a child with special needs. We celebrate milestones, too, but sometimes it can take a little longer. When they are reached, it is a big deal!

8. We learn quickly we don’t have the time and energy to do all the things we used to do. They might be superseded by appointments, diet restrictions, equipment malfunctions, picking up prescriptions, ordering supplies, calling the doctor, feedings, and medical procedures.

9. It can be hard to find parents who understand what we are talking about when we’re discussing trachs and g-tubes, accessibility or lack thereof, and so forth. We often have our own language, which might require translation so we can communicate with other parents around us. Always explaining is hard, but what is harder is being on the sidelines of a group and being painfully aware no one in that group understands the lingo that describes your day-to-day life.

10. All parents experience fatigue. Many special needs parents live with it every day. We are not super human. We do not suddenly become the Energizer Bunny when our child received a life-altering diagnosis. And because it is often more challenging to find help with our child, we might have fewer opportunities to take care of ourselves.

11. We live with constant worry about our child’s health and wellbeing. We know our day, and sometimes our whole life, could be turned upside down at any time. However, when therapies are working, when progress is made, the feeling that comes with that is incredible! They joy of helping your child experience something no one was sure they would is amazing! Indescribable, really.

12. Special needs parents have a lot of the same challenges, hopes and desires as other parents. We just do what everyone else does under different circumstances. We take our kids to the doctor when they need it, though they might go to the doctor more than other kids. We feed them, though we might feed them differently. We make sure they receive a good education, even though it may mean meetings and phone calls and emails. Like all parents, we love our children. We celebrate their victories. We get worn down. We keep going anyway. We all want the same things for our kids. To people who say, “You are so strong” or “I don’t know how you do it” — you’d do it too. You’d be strong. You’d be just like us.

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The author's baby

To the Mom Whose Child Just Got a Feeding Tube

To the mom whose child just got a feeding tube,

Right now, you’re probably pretty overwhelmed. You’ve just been thrown into a world you never expected to be a part of, and that can be scary. There are tubes and syringes, feeding schedules and pumps, and possibly a stoma if a G, GJ, or J tube is involved.

I’m not going to tell you it will all be easy. There can be both emotional and practical challenges. But it can get easier.

The first month or so after your child gets their feeding tube can be hard because you’re still getting used to everything. But for me, it soon became second nature, and I got into a rhythm with the feeding process.

In my experience, the person who is sometimes hardest on you throughout your journey is you. Give yourself grace. Process what you and your child are going through when you need to, but then get back up and keep going. If mom-guilt starts to creep up on you, remember this: you are doing what is best for your child.

Try not to worry about all the things that could happen, like granulation tissue or accidental tube pullouts. Take each day as it comes and deal with each issue as it pops up.

Educate yourself. Learn as much as you can about tube feeding and your child’s condition, if you know what it is. You’re a medical mom now, and you’ll manage your new normal much better if you’re prepared and organized.

Don’t be embarrassed by the stares and questions you’ll get from (hopefully) well-meaning friends, relatives, and even strangers. Smile back or use the moment to educate someone who doesn’t know about feeding tubes.

Find your tribe. You are going to need support and understanding from people who are on a similar path as you. You’re going through a unique experience most people aren’t going to be able to understand.

Talk to your friends and family about what you’re going through. Don’t close yourself off from a potentially valuable support system. They may not understand everything, but there’s a good chance they want to support you any way they can.

Take a deep breath. You’ve got this, momma.

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4 Ways to Be an Even More Awesome Caregiver

November is National Family Caregivers Month. If you’re a caregiver, you might feel tired and unappreciated at times. But muster some enthusiasm to celebrate your amazing self — all year round.

Here are my four suggestions for being an awesome caregiver.

1. Stop fighting. From a doctor with the world’s worst bedside manner to a store clerk who glares, sometimes others can exhibit less than ideal responses to your situation. Offer some grace to the insensitive folks in your life. It’s unlikely they’re out to get you, and practicing patience with them can go a long way. So can kicking passiveness to the curb — speak kindly, but speak up about what you want. Anger takes so much energy. And energy is a precious commodity.

2. Outsource. Research. Respite. Repeat. Forego cable TV if you must and make respite a priority — from a qualified sitter to someone who can drive to therapy sessions. Vet closely, but not with impossible standards.

3. Lean on friends and family members. Really. They want to help. Let them. Have honest conversations about what folks are and are not comfortable doing. For example, some loved ones might be delighted to take your kid to soccer practice or pick up the dry cleaning while they’re out.

4. Take time for yourself. Hospitals have rooms for doctors to catch some z’s when they’re not working. You are the primary practitioner of your world. Go to your room when you can. Sleep, soak in a bath, practice belly breathing, take a walk, grab dinner with a friend, read a good book — or all of the above. In one day. When so much seems out of your control, it’s tempting to want to seize control wherever you can, cramming “down time” with chores, errands or catching up on bills. Don’t make your to-do list the default mode. Make rest and play and whatever’s good for your soul the default instead.

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10 Things I Always Bring to My Child's IEP Meeting

It’s almost that time, time for another IEP meeting.

This is one of the most draining and adrenaline-building experiences I have had to endure in my years of parenting. It can be challenging to prepare and walk out feeling satisfied.

I do not always know or like the person I become in preparation for these meetings or at these meetings. It brings out a fire in me I did not know I possessed.

I have created a list of the things I bring to IEP meetings. Some are not items you can hold physically, but you can mentally or emotionally, and that may make all the difference. Here they are:

1. Strength. I don’t mean the physical kind. I need the strength to bite my lip, squeeze my hand and hold my breath. These are the things I do when I have to listen to the challenges and the goals not achieved. I know they exist, but it doesn’t make it easier.

2. Honesty. No one in that room knows my child as well as me. I will say all I can to be his advocate and defend all I can. I will also challenge what needs to be.

3. Perspective. Many in this room who are telling me what they think is best can benefit from some perspective about our everyday experiences. It really opens eyes and minds.

4. Kindness. I will always start with kindness and the hope that we can all come together. I believe I am more clearly heard when we can talk with one another and not at.

5. Questions. Many of them. There is no wrong question. I need info.

6. Hope. Because I need to have hope. I need to believe in the system and that we can come together for my child to succeed.

Then the items that are more tangible…

7. Tissues. I do tend to cry. My sleeves have been known to look terrible after these meetings.

8. Notes. Clear notes and examples of any and all situations needing to be discussed. You cannot be too prepared. Have a pen, too!

9. Gum or mints. I need to have a distraction.

And then, a tool I learned about that has made a big difference in our lives…

10. Our advocate. I like the security of an expert hired by us to protect our child and know the laws/rights. I am not an expert at that and feel safer with this. These papers are grueling to understand, and I know my weaknesses.

Anything else you would “pack”? Please share!

I never feel like I’m doing enough, I never think I know enough, and I always wonder if it is the right thing.

I do believe that teachers/educators want our children to succeed. I think the breakdown is so frequently the system. A system I believe has been created to fit into a square box. This box can no longer house so many of our kids, and the teachers can try to be creative, but the system might not allow it. This has to change.

I won’t stop until it does. Our kids deserve that.

Here’s to our kids and the incredible advocates we are!

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10 Things I Always Bring to My Child's IEP Meeting
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14 Ways I'm Parenting Around Kindness and Understanding Post-Election

Many of us want to make the world a better place for our children. Many of us want our children to grow into happy, healthy and successful adults. Many of us have different opinions on how to achieve that. As parents, I think we should teach our children there is more to diversity than the way you look, the religion you practice, and the person you choose to love. There can also be diversity in political and social views.

In my experience, I feel I’ve grown as a person by learning about different religions, traditions from other cultures, and viewpoints that do not match my own. That is one of the amazing things about the melting pot of America. I want my children to learn we can be better people when we have diversity — and even adversity — in our lives. We can agree to disagree and remain friends. We can oppose someone’s beliefs through conversations aimed at understanding one another instead of insulting one another.

The foundation of freedom in this country allows parents to choose what they teach their children. There have been a lot of things written about what we should tell our children about the recent presidential election. These are my thoughts on how we move forward:

1. We tell our children how they act is their choosing. How you respond to adversity is your choice. How people remember you is your choice. I ask that you consider leaving an impression of kindness and empathy. I don’t believe hate and violence have ever created positive change.

2. I believe using the outcome of an election as an excuse to bully, be violent, or break laws is wrong no matter what your political beliefs are. There is no excuse for it. It was wrong 10 years ago, it was wrong last week, and it’s still wrong today.

3. We tell our children how we treat people matters. They can watch our behavior and read our social media posts. They can learn how to treat people of different race, religion, or sexual preference and people with disabilities by watching the adults around them. Be an example of kindness.

4. We remind our children that everyone’s life has importance and value. Understand that everyone has a story you may know nothing about. You will likely never know everything about a person’s history, faith, disappointments, trials, dreams, etc. Don’t add to someone’s troubles.

5. We have honest discussions with our children about differences of opinion. I believe arguing different viewpoints is what can bring us to better outcomes. Change is challenging; it requires negotiation and compromise.

6. We teach our children that their behavior has consequences. How they treat someone, what they say, and what they post on social media can’t be undone — even if you apologize and regret it. Hurtful words can last a lifetime; what you post on social media might deny you access to the job you want or admittance to the college you want to attend. How you act can create or break a friendship.

7. We have an honest conversation with our children about how people make a decision to vote for one candidate over another. We all have different opinions on the direction of this country and how important various issues are to each of us. As a voter, we weigh the issues most important to us and vote for the candidate who we believe aligns best with our opinion. We tell our children there will likely never be a candidate who represents exactly everything you want, but you have a responsibility to make an educated vote. People have fought and died for our right to do that.

8. We tell our children they should not believe everything in the news and that there is almost always another side to the story. Investigate, be curious, and research issues on your own. Don’t let the media bias your values or shape your character.

9. We tell our children we live in a country of freedoms that allow us to lobby and protest. Those freedoms, however, do not justify rioting that destroys property or creates violence against other people.

10. We teach our children American history. Diversity can enrich our lives, but it can also be painful and heartbreaking. Study other periods of our history when the country was divided (the Civil War and segregation, for example). What lessons can we take from that to help guide us now?

11. We educate our children about what a democracy is. We read the Constitution and the Declaration of Independence with our children, and we discuss our viewpoints on those documents in a way that can help them understand. We teach them how to develop their own opinions and help them to understand the process of how our government works.

12. We explain to our children that no one person has universal control of our government or the laws that are made. We teach them about checks and balances. We teach them how other governments in other countries operate and how that compares to ours.

13. We show our children how to be an effective voice for change in a democratic government. Making or changing a law takes discipline, strategy, patience and constant dedication. Creating social change does not happen as a “quick fix,” nor does it provide immediate gratification. It is a marathon process.

14. We empower our children to become active citizens in the world they create. And we remain hopeful that they will “be the change they wish to see in the world” (Gandhi).

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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When My Son With Special Needs Joined a School Choir That Embraced Him

When my son Dominic started seventh grade back in August, one of the electives he picked was choir. I liked that he wanted to do choir, because it meant that he would be with many of the same kids he has been with for the past couple of years. About 75 percent of the time he doesn’t sing at the concerts but stands with the choir. No one seems to mind that he isn’t singing. Last month, after his fall concert was over and the hubby and I were sitting in our seats and packing up our stuff, one of the girls in the choir came over and kissed Dominic on the cheek. It was very sweet. As we were leaving the auditorium, a bunch of his choir mates were telling him what a good job he had done and were shaking his hand.

I didn’t think anything could top that experience. Well, I was wrong. Yesterday, I got a message from his teacher that I had to send Dominic into school today wearing his choir outfit. The school choir would be singing in a Veteran’s Day assembly in the morning. This afternoon, Dominic’s teacher sent me a message that he had done a great job at the assembly. Cool. It’s always good to hear that!

This evening, my cell phone rang. On the other end of the phone was one of the paraprofessionals who works in Dominic’s classroom. She said something along the lines of, “I was going to text you, but I decided I wanted to tell you this over the phone.” She went on to tell me that during his choir class he has at the end of his school day, the kids spent the bulk of the time writing letters to veterans. She remarked that the 50 or 60 kids were all talking, so the noise level in the room was pretty loud. Toward the end of the class time, Dominic walked over to the piano in the room where one of the girls in his class was softly playing. Once she noticed Dominic was waiting, she got up and let him sit down. He then proceeded to play “The Star Spangled Banner.” She said as he played, the entire class got quiet and the kids were all watching and listening to him play. When he was finished, the entire class clapped for him. She told me that the kids all love him and he loves them.

These kids don’t ignore Dominic or bully him because is he “different.” Instead, they embrace him.

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