More Than Just Coffee

Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.

So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.

I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.

This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.

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I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.

My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.

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And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?

I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.

*d*

A Matter of Perspective

One of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” to “Why is she so anxious during social events?” Parents like my husband and I not only have to deal with issues such as these but we are also trying to understand everything associated with him medically. All these things intertwine like a complex web and pulling at any part of this web will no doubt effect something else.

For example, my one of my son’s diagnoses is epilepsy and when his seizures become poorly controlled, we have to decide the next step in management. Most of the time we choose to increase the dosage of his current medication before trying another medicine or approach. We also know his behavior is directly effected by how much medication he is taking as he has been known to have a low tolerance for anti-epileptics at high doses. This has made finding the right therapy for seizure control challenging. We want control but we also don’t want to see him overly aggressive and causing harm to himself or others.

A few years ago he started a new medication to treat his primary diagnosis, Tuberous Sclerosis Complex (TSC). The medication is normally used to treat cancer but it has been found to be a promising drug to treat TSC. A year after starting this medication, he was seizure free but he also stopped eating. Feeding issues were not new to him but giving up eating was and we became concerned. After asking adults on the same medication, speaking to his clinic and a nutritionist, we have a better understanding of how the medication may be effecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand how to unravel this complex issue. He could be refusing to eat because of his autism, medication, or behavioral issues. We also realize that we could be partly to blame for his finicky eating habits.

These two examples are not the only ones I could list but they are the issues that have caused the most conflict in our lives. It is particularly difficult for us to pull our son apart from his problematic issues and fully understand how to manage them, so trying to explain it to others is almost impossible.

I know my husband and I are not the only parents who are exhausted by the questions and unwanted advice over subjects we are trying to understand ourselves. We started our son in early intervention at four months of age. I have worked with therapist for years discussing his different habits and behavioral issues. We have spoke to his team of doctors, nurses, psychiatrist, nutritionist, and many more to try to give us the best chance of helping him live the fullest life possible. After seven years, there are many questions that we still cannot answer. There are many questions that don’t have answers. I want to share a few insights to what it feels like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.
Although we have spent years with professionals to try to help our child work through various problems, there is no magic fix. There will still be times when he will have a meltdown, inflict harm on himself or others, and many other things we’d rather not see. This does not grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we have been working very hard to help our children. Don’t forget that they are often struggling in ways we don’t understand. If you haven’t been working just as hard at helping, then stop the unwarranted advice.

2: Dictating to us about what you think our child should or should not do causes unwanted stress.
We have been there. There is a party and all the kids are lined up, ready to play a game and someone says, “Everyone plays, even (insert our child’s name here)”. We have even been told we HAVE to sing The Happy Birthday song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries but we are also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. If we choose for him not to participate, we have a good reason and if that isn’t good enough, prepare to get what you have asked for, anxiety from our child or a stern “no” from us. Asking before assuming is always the best approach.

3: Pointing out our child’s flaws is very upsetting.
I don’t understand why others feel the need to point out our child’s issues, like we are blind to them. We are obviously aware of these things, it is OUR child. Instead, try acknowledging the good things our child is trying to do.

4: Fixing our child for us undermines our parenting.
Trying to “fix” things, especially without our consent is not welcome. If we don’t offer our child fruit at the dinner table, we don’t want anyone else to either. If our child hasn’t had a haircut for a while, there is probably a reason for it. Don’t try to save the day with these “fixes.” We are not neglecting our child when we choose not to do or offer things that others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture) so unless you are a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed causes friction in our relationships.
My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same, he’d scream and hit himself. This never stopped my grandfather, he’d keep asking. This caused us a lot of anxiety because even getting our son to the table was an accomplishment. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather, “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.
Sometimes an innocent question or action could cause anxiety for our child, so we ask our requests regarding our child be respected. Don’t be the reason for additional stress.

The bottom line is this; we need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless too but we are doing our best despite the fact that we don’t have all the answers. We want to be trusted to know what is best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

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Pondering the “What If” in Life

It’s Monday and Kristie’s day began before most of the world opened it’s eyes. It’s 2 a.m. and one of her two sons is ready to start his day. Kristie rubbed her eyes, dreary from numerous days of scattered sleep.

“Can I get up?” asked her youngest son Blake standing next to her bed

“Go back to bed, it’s too early.” As he wandered back to his room, Kristie knew she shouldn’t get too comfortable. She knew he would come back and he’d probably ask to go to the toy room. Several minutes later, he was back. ” Come on,” she said as she walked with him to the toy room. She laid on the couch and he grabbed his iPad. She didn’t look forward to the next four hours of interrupted sleep on the couch.

On this morning Kristie couldn’t sleep. She settled on the couch and made her best attempt but couldn’t.  Instead she ended up watching her little boy. Her mind began to wonder about all the things surrounding Blake and her oldest son, Drew. She began to rehash the “what-ifs” and all the other parts of her life she tries not to think about. It’s the same inner monolog that plagued her when her oldest son Drew was born, it’s the same crushing thought that wonders what life would be like without Fragile X Syndrome. What if their two boys never had it and what if she never carried it? “What if,” she wispered to herself.

She began to wonder what their life would have been like without all the harsh looks, awful critism, and impossibly difficult days in the  fifteen years since Drew was born. She recalls the worst of moments when a harsh stare was enough to make her family feel unwelcome and how a terrible comment like, “You should stop having those defective children,” seemed to cut her to her soul. She could still feel the same sting she felt fifteen years ago when it was confirmed that Drew had Fragile X.

She sleepily closed her eyes and  began to dream, or maybe it was her imagination but when she opened her eyes, both of her boys stood in front of her. “Hi Mom!” They spoke with unbelievable clarity, each offering arms open wide. “Thank you,” she heard from both boys harmoniously. In her  confusion she also heard, “We know it’s been hard, sorry Mommy.”

“No babies, don’t say that.” She thought she had spoke but the words didn’t come out.

“I love you.”

“I love you ”

Each boy embraced her. The very real feeling startled her awake. It was Blake. He was pushing on her arm. He wanted to watch a movie. It was 4 a.m. She got him settled again, all the while playing back the vivid vision in her head. She returned to the couch and now she really couldn’t sleep. She felt a gnawing in the pit of her stomach. If getting carried away with an impossible notion where her boys weren’t plagued with Fragile X wasn’t enough, she felt like she got a very real glimpse of it. She was very certain her boys would never fully understand the difficulties their family faced daily. The boys didn’t know life without Fragile X, it’s all they knew, but Kristie couldn’t help but wonder.

What would it feel like without the cloud of anxiety that seemed to hover over her boys. The anxiety that make daily schedules a must, especially when plans change outside the normal routine, small difficulties a big deal, and outings that often feel more like a production. The anxiety that causes fear of the unfamiliar. The same fear that causes tension between the boys and sometimes leads to physical outbursts. Most importantly, what would life be like without her own anxiety over every decision made in regard to her boys?

Kristie and her husband wanted to be prepared because they knew they could not afford take the trial and error approach to parenting. They knew they would need support and help with the decisions they would have to make for their boys and a foreknowledge of how to deal with the issues that come with Fragile X. They have attended meetings and conferences to help navigate life with their two special boys. She and her husband couldn’t simply ask, “When will Drew start school?,” they asked questions like, “What’s an IEP?” and “Will this school be able to accommodate his special circumstances?”. They couldn’t anticipate developmental milestones, they had to work hard to help the boys reach them. Each day is hard work and she and her husband often feel like they are fighting an uphill battle. They fight everyday to make life fulfilling for their boys while trying desperately to somehow fulfill their own needs. So they do wonder what would life be like if every decision didn’t feel like a thread that could pull the complex tapestry of their lives apart.

Kristie blinked heavily, “It’s six Blake, let’s get a shower.”

At this age both her boys should be taking showers independently but both boys need help as developmental delays and anxiety keep them from doing it without assistance. Soon she would have to wake Drew who is often hard to get out of bed and often difficult to bathe.  After the routine of morning showers, Kristie either feels ready to approach the day or ready to go back to bed. Today was difficult. Both boys needed plenty of help and verbal cues to prepare for the morning. It felt like an entire day was packed into a mere few morning hours. Already tired and exhausted, she began to make a schedule for the day, but today was proving to be too much. She began to cry.

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Drew and Blake saw her crying. Drew nudged her and said, “You’re a sad little Mama,” and stormed off but Blake stood for a moment, looked at her, and began to cry.

She couldn’t help but smile through her tears. She looked at Blake and just like any other mom, she saw her baby and wiped away his tears. But Kristie became especially grateful for this moment. There was no anxiety, schedules, or questions, just a moment where she could cry with her little boy. It was a moment when he was moved by her sadness. This small moment reminded her of a great many things.

What would she be like without Fragile X? Would the small and grace given moments such as these be as special? Would she see the world with the same set of eyes if her life wasn’t entwined with it? Undoubtedly, the disease has laced each day with challenges most families will never face, but it has also allowed life with her boys to teach her many things.

She knows patience is not given but learned. She knows even when she has felt like she has failed, there is always an opportunity to try again.

Grace is invaluable. She knows why it is needed because she knows she has needed it.

Love should be given blindly and love is not defined by another’s capacity to reciprocate that love.

“I love you Blake,” she said as he left the room. Kristie wiped her own tears, reminded of why she makes it through each day.

She has been given a gift and although she can’t help but occasionally wonder “what if”, she knows she is filling a greater purpose. Kristie is the woman God has intended her to be, a woman who serves as an example of His unending love and grace. Kristie sees the world with compassion because she has needed compassion, she has patience because she has to endlessly practice it, and she loves her family as selflessly as God wants to love each of us.

Yes, Kristie has grieved the life she envisioned for her boys, she still prays for easier days, and still desires understanding from those she comes into contact with, but with it, she has an opportunity. She knows there will be days when she will wish the world would love and accept her boys as she has but it won’t, she struggles with the inevitable bullying and dirty looks that frequently come their direction, but you won’t see her deny the blessings she has received through each of her boys. Life for Kristie and her family can be hard but they truly love the life they have been given despite the difficulty. They have been given the rare opportunity to show others that true joy comes from the foundation in which you stand.

Kristie knows that on days where she feels like she has had enough, she can still stand because she chose a solid foundation in her faith. It is faith in a God who provides the most joy in what seems to be the most difficult of situations and shines an example of His love through her life. God often uses the broken to do His best work because oftentimes the broken are already asking for His guidance through prayer. No doubt this is Kristie.

At the end of the day, she can look back and thank God she was blessed with another and thankful for the strength to endure. Soon enough the day will start again and she may be tempted to wonder “what if” but she can be assured she will remember why she wouldn’t want to be anywhere else.

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A Brother’s Lesson in Disability

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It's hard to believe they were once this little.

My disabled son is seven and he is the second oldest of my four children. My special needs son was diagnosed with Tuberous Sclerosis Complex at three months of age. A few of his secondary diagnoses include epilepsy, autism, and intermittent explosive disorder. He is considered multi-disabled. As he grew, his delays became more apparent to all of us, even to my when my oldest son. He and my youngest son are 17 months apart and it was very exciting for him to have a little brother of his own. It didn’t take long for him to notice that his little brother didn’t play with him as he anticipated, and that his little brother was also sick.

At four months, my youngest son developed a rare and catastrophic form of epilepsy called Infantile Spasms. These deceivingly innocent looking seizures occur in clusters and are very hard to control. He would have multiple episodes a day and the seizures would be only a few seconds apart and could last up to fifteen minutes. All of our best attempts at controlling the spasms eventually failed. This made it hard for him to reach developmental milestones. His brain was just too bombarded with epileptic activity to make any significant developmemtal progress. So as both my boys grew, the developmental gap also grew. My oldest would be playing ball, stacking blocks, or drawing and my youngest could only watch. His body was weak and he had limited mobility. He also had significant speech delays. It was obviously hard for all of us, but especially for his big brother who wanted to play with the “little buddy” he eagerly anticipated. How could I explain to a three year old why his little brother couldn’t play or talk? How could I help him grasp such a complicated subject in a simple way?

My oldest was very familiar with his room. We spent alot of our time playing there. I first asked him where all of his favorite toys were and he happily showed me. Next, I blindfolded him and asked him to bring me those same items. He did find and bring me what I asked but it took him a while and he needed my help. After that and a few laughs, I explained, “Your brother is just like you, he just sees things differently. It may be harder for him but he knows what’s around him, just like you knew your room even with the blindfold on. And just like you had to take your time, he has to take his time to do all the things he would like to do. You needed me to give you directions on where to go and we have to do the same for him. You eventually got to your favorite things and he will too. You are one of your brother’s favorite things and he will find you. Give him time.” I also reminded him that even though our experiment was hard, we still laughed and he needed to laugh with his brother, even when it gets hard. He smiled and I hoped something stuck but every day from then on I still remind him, and all four of my children, of one or all of these things when life gets hard,  give it time, offer help, give lots of love, and never forget to laugh.

*d*

A Very Happy Birthday Little Buddy

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It’s a quarter till eight in the evening and three of my children surround my husband in our living room. Each are taking turns blowing out a birthday candle and singing the Birthday Song. My special needs son is singing his very best version of the song and inserting various family member’s names into the chorus. No one is celebrating a birthday today, no one is celebrating a birthday this week but we are celebrating.

My son has struggled with autism for the last five years. For the first two years after his primary diagnosis, he was not diagnosed with autism despite his self-injurous behavior. As he grew, additional autistic behaviors became more evident. It was clear he was having a hard time dealing with the world around him. From a terrible experience at Disney World to family gatherings, he was unable to tolerate loud noises and crowds. Birthday parties were the worst, even his own. He didn’t like singing or clapping and the appearance of a birthday cake sent his anxiety skyrocketing. We decided after many attempts to encourage him to participate, we would leave the room with him during the singing and blowing out of the candles. It was hard for some family members to understand this when we celebrated his birthdays but we found other ways to acknowledge his special day.

Since the addition of a new medication to treat his disease, we have slowly seen developmental progress. He has been on it for over two years and his language has improved, he has gained some understanding of the world around him, and he has been able to tolerate noise and crowds much better. We will never be able to redo our vacation…. but we can help him enjoy those experiences he once missed out on.

Last Christmas my son was six and it was the most amazing Christmas with him yet. He was interested in opening gifts where he hadn’t been before, he was excited about the Christmas lights, and he was able to sing us numerous songs he learned at school. It was a holiday of many celebrations. We also noticed he began to enjoy birthday parties and we were stunned when he refused to leave the room for the birthday song. We expected tension and got excitement. So on his seventh birthday, one he shares with one of his little sisters, we made up for the previous years. He was very excited to open gifts on his own, socialize with family, and blow out the birthday candles after singing the Birthday Song. We sung and blew out the candle six times. He was excited each time.

Disability can take these kind of moments away, little moments most people may take for granted. Experiencing these once seemingly unobtainable moments is where I find joy. I cried when I watched him independently write his name, watched in amazement as he sat peacefully playing with toys he has never touched, felt my heart jump in excitement as he ran upstairs to get the Barbie car out of his sisters’ room so he could play with them. It’s those moments when I can let go of the worry and see the little boy under the disease. It’s the little boy who likes the color purple, who loves trucks (he was recently able to verbalize this to me), enjoys watching and playing bowling, loves everything Barbie, and is wonderful just the way he is. It’s time for the world to stop pointing out the same mundane differences. Experiencing deep joy with someone usually happens when we accept and celebrate one another just the way we are, even if it means celebrating the little things that give us that joy together. Happy birthday little buddy!

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Parent’s Cheat Sheet for the Newly Diagnosed

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My son will be seven in a couple weeks and I can’t decide if I have a harder time accepting how fast he has grown or realizing how long he has struggled. My son was diagnosed with an incurable disease as an infant and it was a very scary time for us. I thought I would write myself a cheat-sheet as the mother of a newly diagnosed child:

* You don’t have to have all the answers right now.
I know it feels like you should but deal only with the issues right in front of you. Ask the questions but don’t overwhelm yourself. There will be time to become an expert, but it won’t happen in one day.

* Take what you learn while researching lightly.
No child is the same. There are worst case scenarios for every illness, but don’t assume the worst until you must. Again, deal with the here and now.

* Do not be afraid to make a phone call to your child’s physician.
I once was hesitant to call my son’s neurologist but I got over it. Don’t hesitate to pick up the phone, even if it’s to ask additional questions. Medical staff really are there to help.

* Buy a notebook.
The first year of post-diagnosis is a blur. It will be hard to remember everything. Write down what you feel is important. It will come in handy during doctor’s appointments. Also, write down all your questions before those appointments. Until you get the hang of your new normal, life will be chaotic.

* Speaking of papers, you may want to organize a place for paperwork.
Life in a few years will be full of paperwork. These documents can be a lifeline of valuable information. DON’T LOSE THEM!

*Get in contact with your local county funded board of disabilities.
Head Start and the local health department are also good places to contact. There are many people and programs designed to help children facing life altering illnesses. You may also want to speak with a social worker at the hospital.

* Love your child.
I know this may sound silly to say but sometimes the addition of a diagnosis can make you feel distant from your child. He or she is the same child they were before you learned of this reality. A child can feel a difference even if they are not able to verbalize it. Affection speaks it’s own language and it’s understood by all.

*Feeling distant from your child is normal and you are not a bad parent.
There will be days where you will feel like you can no longer relate to your child and you may wonder if you still love him/her. I assure you, you still love your child and you will experience a love deeper than you have ever imagined.

* Life doesn’t end here.
Right now, it feels like the life you knew is over. Yes, you will morn. This too is normal. The loss of a healthy child is real and you need to take your time to work through the grieving process.

*Life is now about taking one day at a time.
This was the hardest reality for me to face. I could no longer dream of tomorrow because every day with disability and disease is about getting through today.

* Do not limit your child.
Some may disagree but you child has great potential. Even if your child is severely disabled, he or she can teach you great things.

* The sooner you let go of the guilt, the better.
Guilt does not change reality. Replace guilt with determination. Every time you feel like you are not doing enough, resolve to try harder.

* You don’t have to be strong for anyone, except your child.
There will be times when your child will look at you with fear in his or her eyes. At those moments, you must be ready to say, “I’m here and everything will be alright.”

* You are this child’s hero and you will be their champion.
You are stronger than you know and you will do great things, even when you feel like you are failing. You will be a soft place to fall, a source of strength, and a light for your child in dark times. You may feel at your weakest now, but your courage is about to be unleashed.

* Speak up and speak out!
You have this child for a reason, find it and fulfill it! Use your voice and don’t feel bad about it.

* This just may revive your hope in others.
You will experience compassion and understanding from many people. You will have a rare and special opportunity to see how much love is in this world.

* Don’t be afraid to reach out.
There are resources and people waiting to help. You are not weak by asking for help. You now have a very heavy responsibility.

* It’s never too late for a new start.
There have been days I would rather forget. Some days are extremely difficult but there is always a chance to try again. Regardless of what happens in a day, you can always step back, take a breath, and work for the better.

* You won’t always feel this bad.
I know it may be hard to believe right now but it will get better.

* Blow bubbles, sing silly songs, and laugh with your child.
Smiling won’t be a cure but it will help heal your heart!

There will inevitably be days when you will feel like life is unfair and you are powerless to change it. Remember, you are not alone. There are many parents experiencing the same thing. Most of these parents will tell you how they have been transformed for the better because of the journey in which you are now about to embark. You will see life more clearly and love more selflessly. You will see life through the eyes of a special needs child, and it is life changing.

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Thirty Lessons From a Special Needs Parent

A few events today had me thinking about the following post. I had originally posted this on my personal Facebook page and I thought I would share it here. I haven’t been a special needs parent for very long but it has certainly changed me in a short period of time.

1: Patience is needed and taught on a daily basis.

2: “Slow to anger” is an important saying that does wonders when practiced.

3: Someone should never be judged based on their disease and/or disability.

4: Never judge someone if you are not coping with their problems.

5: Treat others the way you want to be treated.

6: Whispers, stares, and gossiping about a situation that can’t be helped, hurts.

7: Difficulty teaches compassion.

8: We want to help but are often hindered by our circumstances.

9: Guilt is a part of every day life.

10: Depression is real and is felt a lot more often than we want to admit.

11: Help is not requested as often as it’s needed. It seems important for others to think we aren’t falling apart.

12: We stay at home and shy away from gatherings if we know it will cause stress all around.

13: Choosing a baby-sitter is a big deal, thus we don’t go away as often as we would like.

14: We appreciate the opinions of others but rarely take advice from those who spend very little time with our child.

15: We need and love support, support, support.

16: We rarely want sympathy. We just want someone to talk to. It helps us unload some of our burden.

17: We want to know about your family and notice when you stop reaching out to ours. We realize our life seems depressing, but it is ours.

18: Our hearts break a little when we see others doing things we know we may never be able to do.

19: Negative people and opinions hurt, we are doing the best we can.

20: Love reaches deeper than we ever expected.

21: What seems like a burden to others, is a blessing to us.

22: We are sad when others refuse to see the joy our children bring to our lives.

23: We have seen more compassion and love from others through our difficulty than we ever expected and it’s humbling.

24: Celebrate the little things.

25: Choose the battles that really count.

26: We worry about losing our spouse profoundly more than other people. We know how difficult it would be to raise our children alone.

27: We no longer measure great achievements by the world’s standards.

28: Some of the best friendships we have made are forged through a common bond.

29: With each struggle we become stronger.

30: Our journey has helped us love the differences we see in others.

If given the choice, we would not choose a disease or disability for ourselves or for our children but we have been blessed by the difficulty it has brought us. We know what it means to make every day count and we understand why each day must be appreciated.

*d*

More Children After the Disabled Child: Is It a Good Choice?

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When my husband and I found out that we were expecting our third child, we were very excited. One of the joys of expecting a child is sharing the news with friends and family. Unfortunately, instead of hugs and congratulations, we received critism and half-hearted blessings. It was disheartening. By the time I shared the news with my co-workers, I was in tears. This baby was making his or her way into the world and we felt very alone in our joy. The scarce number of people who were sincerely happy for us was not enough to extinguish the guilt and sorrow we were beginning to feel. It was not what I wanted or expected when announcing a pregnancy. My husband and I may have took the hard road to find each other but we had a strong marriage, probably because of it.  We had problems concieving our first child but were eventually blessed with two boys. We also worked hard to care for our family. The doubt about our third pregnancy was surrounding our disabled son. We were met with questions and disappointment as if we never considered what it meant to bring another child into the world while navigating the issues related to raising our disabled son. We were treated like the pregnancy was completely unplanned and the decision to expand our family was rash. I will never forget how the reaction put a dark cloud over my excitement.

Our disabled son was two when we conceived our third child. I was told by my doctor that we should consider having another child if it was something we may want to do in the future. I had health issues that could possibly halt a chance to get pregnant again. When faced with this information, we considered all of our options. Yes, raising a disabled child had it’s difficulties but we had decided that we wanted him to be a big brother, even before his diagnosis. We also weighed the risks and benefits to having an infant in the home. We knew we had to be careful allowing him around a baby because he didn’t fully understand how to be gentle and boundaries were something he was struggling to understand. We knew his health issues took our time and resources. We also knew the mutual benefit of having another child in our home would be for our disabled son and another child. I realized with some sorrow that a new child would most likely surpass his cognitive abilities but with that would be a chance for him to have a playmate close to his cognitive level. After discussing and weighing these risks, benefits, and more, we carefully made our decisions based on what we desired for our family. Neither of us wanted to let his disease also take away the joy of expanding our family. It had already taken so much. We didn’t want him to grow up knowing he was the reason we never had more children. How did we know he would not enjoy the company of another sibling? We didn’t. We decided  another little person would join our sometimes crazy, chaotic family and we trusted in something bigger than ourselves to help us if it became difficult. We had to ignore the nay-sayers and be happy about the decision we had made because it was best for us. I wish we would have felt supported in our decision. Instead, we were explaining why we came to this conclusion to people who really had no true understanding of our family. We felt like we were two teenagers trying to explain our unexpected pregnancy instead of a married couple announcing a joyful pregnancy. In hindsight, no one would have got the lengthy explanation we were giving, we would have asked for the respect and support we needed. We would have to let time prove we were strong enough for the challenge.

It’s three years later and we have no doubt that we made the best decison. We were also surprised with a fourth child. We had decided to stop at three and elected to have  surgery to help with my health issues. It was a week before my scheduled surgery date when our youngest daughter snuck in under the radar. We were met with the same skepticism by the same people. Yet another announcement was shrouded in gloom due to the lack of understanding. Most people waited for our reaction because they knew another baby would take more time and resources. My husband and I were once again elated to have the opportunity to bring another life into the world.  I think some people would rather try to be a voice of reason than that of support and it’s sad. Sometimes it’s needed but not in a situation such as this. No good was going to come from criticism. No matter what, the baby would arrive in several months. Sharing doubt and disappointment would only make the critics feel better about themselves. It didn’t do anything but snuff the joy out of our announcement. I would hate for anyone else to feel the way we did.

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I wrote this post because the question of having more children after a disabled child comes up in support pages often. I wanted to offer my advice and share our experience. My husband and I knew we had a strong marriage and we supported one another. We knew if no one else supported us, we were okay with our choices. We did what was right for us. We knew our son’s weaknesses and we knew bringing another child into our family was within our capability and within his capability to learn how to interact with another sibling. Our oldest daughter is now his best friend, she tells us often. She sets up his play bowling set in the hallway over and over because she knows he can’t do it himself. Sometimes he yells at her or gets aggravated but she keeps helping. They are mutually learning something from each other. She is learning tolerance and he gets a chance to socialize. My disabled son has just as much to teach us as we have to teach him. He is teaching my typical children that friendship isn’t based on ability or disability. Friendship is time spent together and learning to love differences. They look forward to doing something they enjoy together, like playing pretend bowling. I can only hope his life with us will effect our typical children in a positive way. Maybe they will choose to play with the ignored child at school that reminds them of their brother or they will stand up for intolerance because they have already been taught to meet disability with understanding. I am sad no one else could see what my husband and I did three years ago. It is sad that I will always think of the disappointment others shared instead of joy when we found out my beautiful daughters were going to be a part of our family. I have forgiven but it isn’t easily forgotten (a subject of my next post). If we had decided to stop having children, that decision would have also been made with love. We would have appreciated the same support and understanding with either decision. Being blessed with a special needs child also means taking extra care with decisions for our future. We did consider both paths before making our decision and we respect anyone who faces the same.

If you are reading this and are on the outside watching a family with a disabled child decide whether or not to welcome a new family member, be supportive. Offer an opinion only if you know the situation is dire or if the family asks your opinion. If you are a family member or friend of a strong family who decides having a baby is a good choice for them, don’t be the gray cloud lingering over the parent’s joy. Chances are, that disabled boy or girl will be a pretty awesome big brother or sister and those babies you aren’t sure about will grow up to be tolerant and loving children because of those special circumstances. There is a lot of love in a big family, especially in a big, special needs family. If you have been told that having another child is not the best choice for a special needs family, offer the same amount of support and understanding. Be a comfort if needed. Sometimes deciding to stop having children is a difficult choice and if circumstances were different, the family would love to grow their family. These parents have plenty of variables that weighed in on a their choice. It may not be the choice they envisioned but it is the best choice for them and their special needs child.

In the end, there is no cookie cutter decision that suits every family. There will always be strong opinions on the subject but families have to decide what is best for them. Bringing a child into the world after a special needs child can have good and bad points but it is a choice parents need to consider carefully. Chances are, if another child is announced in joy or a decision has been made to stop having children, they have thought about all the possibilities and it’s best to share in the joy and/or offer your support and leave the criticism for another subject.

*d*

Reply by ~L~

I know I am guilty of the knee-jerk negative reaction and I know that you know that I apologized because after I thought about it,  knew I’d hurt your feelings with my thoughtlessness. Not all people are willing to see something from someone else’s perspective but I always try to make sure I at least give it a shot. I didn’t immediately realize that I wasn’t considering it from your angle.

And you couldn’t be more right about the benefits and I know you would never need a lecture about the hardships of adding another child to a special needs family. If everyone had a disabled sibling to grow up with, the world would probably be an exponentially better place instead of the judgmental, intolerant place it can often be.

Your kids are loved immensely, taught well, and being brought up in such a way that they will be good human beings. To me, that’s what really matters.