I’m Not Terrible, I’m Two!!

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My baby is going to be two soon and I get tired of hearing about the “terrible twos” or the look of remorse on people’s faces when they find out I have a two year old. Two can be a trying age for parents, but imagine what it’s like for a two year old. These little ones are growing and doing so much for the short two years they have been alive. I feel blessed and honored to have her so I wrote a post of what a two year old, like my daughter, may say to their parents if they could.

I am not a nuisance.
I want your attention because I need you.

I am learning.
I have to test what’s around me to find out how it works.

Let me drop things and make messes.
I won’t know how messes are made until I have made some. (Oh, and I don’t understand gravity.)

I need to explore.
I won’t learn or understand if you contantly yell at me for exploring my environment.

I will throw tantrums.
The world can be overwhelming for someone who’s only been in the world two years. I also don’t understand all of my emotions. These things aren’t easily understood by adults either.

Don’t expect perfection out of me. I can’t be held to an unrealistic standards unobtainable for even you.

I can be demanding.
I get mad when I don’t get my way and I think everything is “mine!”. How do I know who is in charge and how to share unless I am taught those things?

I need a nap!!!!
I’m learning a new language and how to use my body. I’m also growing very fast. All of this makes me tired! Please, give me a break and let me rest!

The world is a very big place for me and I need a break from it.
People and places can overwhelm someone as small as me. I often need to spend time in a familiar and comfortable place.

Don’t forget that everything around me is four times my size.
Sometimes it’s nice for me to be in a safe environment just the right size for me. Why not buy me my own chair or a toy at my height? It helps me learn how things work at my own level and it makes me feel special.

I spend lots of time climbing.
I have to climb to use those big things around me but keep a close eye on me because I think it’s my job to conquer everything in the house!

Stop acting shocked when I’m upset when I don’t get the rest I need.
I’m too little to keep up with your pace. My emotional state often reflects my physical state. I feel better when I can rest when I’m tired, don’t you?

Look at how much I am doing AND I’M ONLY 2!!!
I am an amazing work of art, sometimes you just have to stand back and look at how beautiful I am!

Praise me!
In my two years of life, making you happy is the greatest thing! Let me know you are happy with me.

I like attention.
I’ll behave well or poorly to get it, so you may want to recognize the good things I do to get it.

You are my whole world!
Really, you are. There is a reason I want you to give me all of your attention. You are my first true love!

*d*

Five Things Children May Want to Tell Their Parents About What They Really Need

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Praise me.
Spend more time praising me when I do something right rather than solely scolding me when I do something wrong. Praising me when I do well teaches me that you are paying attention. I learn that positive choices mean positive results and I have the ability to make others happy by my good choices.

Let me spend time independently.
Don’t hover over me. Let me wander around a safe environment. I need to learn that I can do things on my own and feel the accomplishment of doing things independently.

Allow me to fail.
I need to know life isn’t always fair. I know you love me but let me fail so I can learn to try again and not give up. I will grow faster than you realize and I need to be able to graciously accept defeat when necessary and know failing isn’t the worst thing that can happen to me.

Remind me that you are looking out for me.
Remind me to zip up my coat, clean my room, and do my chores. Keep after me because I expect you to. Be my parent first and then my friend. I will have a lot of friends in my childhood years but you will be my longest friend, just give me time to grow and realize it.

Love me.
Make sure I know you love me, even when I fail, refuse to listen, or disappoint you. I’m not perfect. I will never be perfect but your love for me through anything feels pretty perfect.

*d*

Finding Your Perfection

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Today I watched you stand in front of your mirror, your face barely reaching above the top of the dresser – in one hand you hold your plastic curling iron, pretending to fix your long, dark hair for whatever pretend adventure you and your baby sister have planned for today. I know you both will grow up way too fast. I imagine you both crowding in that same mirror that will someday be too small for both of you to use. One day you will have no use for the plastic curling iron and pretend makeup you adore now. You will leave it and your childhood behind. Soon, you will quietly whisper about the boy or boys you are preparing to see. I know one day you may not want to tell me about your dates, and especially the young men that await you, but I’ll still be there, even if I’m still just watching you from the doorway.

Right now a young man can be anything you imagine. He can be as handsome and brave as one in a functional movie, but someday the choices of whom you will want to be with will be more complicated than you realize. I want talk to you about when you give your heart to another person. Your heart is beautiful and precious. I can only hope that you know exactly what you deserve. You won’t learn the majority of it from me, you will learn the most about men from the most important man in your life right now, your dad. I hope when you decide to date, you are willing to wait for someone who is as wonderful as your father.

I had a hard road before I met the man that I’d love forever. Once we met, it didn’t take me long to fall in love with him. It isn’t hard to love your dad, he has a generous smile and a warm personality. Of course, I thought he was the most handsome man I had met but it wasn’t just those things that made me fall in love with him. It was also his generosity, his willingness to give of himself selflessly, and his big, big heart. When we were together, it was like I found a missing part of myself, the best piece of myself. I knew quite soon he and I were supposed to be together.

When he and I met, dated, and fell in love, he demonstrated qualities that assured me he was a trustworthy man. His actions defined him as a man and who he would be as my husband. I was his equal, his partner, and I never worried about what he would do once he held my heart. He didn’t just compliment me, he helped build my confidence. He didn’t just talk with me, he had a genuine interest in me. This is all important because when the time comes, you will want to know if you are with someone who is just as interested in you as he is himself. You will know the relationship will last through the best and worst times because he made time to know you and hopefully you will have done the same. All of this is important because bad times in a relationship will inevitably come. If what is supposed to be the best part of a relationship brings out the worst in someone, don’t be surprised what the worst times in a relationship will bring out. You will want someone who cares about your well being as well as his own during hardships. I know because your Daddy and I have been through a lot together. When we vowed to love one another better or for worse, we didn’t realize how important that vow would be.

We have faced an artillery of difficult circumstances. For example, we never anticipated having a child with a life altering medical condition, or that I would also be diagnosed with one, all within ten years of our marriage. Both diagnoses bring stress to our marriage in various ways.  It is in these times that I have seen the best, not worst, in your father. He has been an example of how to truly love another. He gives of himself and his love selflessly and meets each challenge with understanding and prayer. When there is nothing but pain and hurt on the faces of those he loves, he is patient and non-judgmental. It may sound easy, but it isn’t. It is hard to smile when there is pain inside and I know he hurts too. It’s not easy to be the one person an entire family looks to for guidance and your dad does it so well. When he smiles and says, “It will get better,” and you can have confidence in his words. He can tell me he loves me and thinks I more beautiful than the day we met and although I don’t believe I am, I believe him.

So girls, one day I hope you will wait and seek a man much like your dad. He isn’t perfect, no one is but he’s pretty close. We are all very flawed but love and the love of someone who truly loves you can make a relationship that feels nearly perfect. Until the day you leave us for a family of your own, we want to love you the same…….. imperfectly perfect

Love,
Mom (*d*)

Help from a Song

It took one day in mid-October to change my life. My infant son was admitted to the hosptial after having two seizures at home. After three days of scans, questions, and crying, we were given a diagnosis, Tuberous Sclerosis Complex. We left the hospital in shock. We had never heard of this disease and now it threatened our son’s life.

Nothing made sense as we drove home from the hosptial that night. As I sat next to him, I held his tiny hand and studied his perfect face. It was only three months ago when we brought this precious life into the world and we had so many dreams for him. No one could tell us how this would effect his life and we were told he could be disabled. I was heartbroken as I realized the future was uncertain at best. There was no more dreaming of tomorrow as we were uncertain of today.

As time progressed, so did his disease. He developed a catastrophic form of epilepsy, he began to exhibit behavioral issues, and efforts to control the effects of the disease kept failing. I became more depressed despite my deep faith that teaches purpose in suffering. The feeling of helplessness was overwhelming. I yearned for the days with my baby when I could still imagine him free of his disease and I could hope that he would fulfill a normal life.

We reached our emotional bottom after five years of sleepless nights and uncontrolled epilepsy. His medical team wanted to discuss the next step in gaining control over his seizure activity. It was in that room amongst the discussion of neurosurgery that helped change my perspective. I didn’t see the young boy who was hitting, screaming and injuring himself out of frustration or pain, I saw my baby. I saw him as small and innocent as the day I held his hand on the way back to the hospital and my heart broke all over again. How could this be happening? I tried to sort out the last six years of ups and downs and continual failures. Fortunately we were given the option of starting a new medication and avoiding neurosurgery. We once again left the hosptial with mounting uncertainty.

Shortly after that visit, the song, “Can We Start Again Please” from Jesus Christ Superstar popped into my head. It persistently played in my head so I scrambled to find the song online. When I heard it, I wept. I recounted six years of failures. I recounted everything from medication to my own failure as his mother. It knew this song was God’s way of telling me that it’s okay to start again. It was okay to fail because the question could always be asked, “Can we start again please?” Shortly after, I rocked him in my arms while listening to that song and I softly sang it in his ear. I then asked for his forgiveness for my own failures. I knew the frustration with his disease had also gotten the best of me. When the difficult days get the best of me, I ask to start again. Sometimes several times a day if necessary. I just keep trying. A simple song reminded me that there is always a time to start again.

*d*

If a Photo Tells a Story

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Here we are, my youngest son and me. It was as uneventful as it looks. We were waiting in the van for Daddy to come out of the grocery store. My buddy said he didn’t want to go in so he sat with Mommy. He did get anxious while we waited so I decided to distract him with one of his favorite activities, taking his picture. “Cheeeeese!!!” he said while sporting his best cheesy grin. Of course I didn’t like how I look in any of the photos. My hair has been falling out at breakneck speed lately. I also noticed his hair was getting a little long. I am glad his medication hasn’t been doing to his hair what my medication has done to mine. Anyway, he was overdue for his haircut. Although, he’s been doing better at getting a haircut, I thought I’d let him go a little longer before we’d give him one. Autism and haircuts don’t mix well at our house.

That’s how life is for us, things like a haircut that seem simple usually have a story behind it, like this photograph. What you don’t see in this photograph is how swollen and painful my knees were that day and how bad my shoulder hurt. My Rheumatoid Arthritis was causing me a lot of grief. The only other time I had left the house that week was to pick up my oldest son from school. By this time, I was anxious to find any reason to leave the house.

Leaving the house wasn’t what it used to be and I was wondering if I should apply for a handicap placard. You see my cutie in this photo has had a rough life. Here he is at the end of a very rough summer. He has been weaker than usual because his seizures had been increasing. He didn’t want to go in because he had a few seizures that day and he was weak and a bit tired. I wondered if I should get a placard for the times he may want to go in and a long walk to the store would be too hard for him. What about me? Some days I can barely make it down my hall to the bathroom but I worry because neither of us “look” handicap. I had a crazy vision where someone deciding to do their own sort of “justice” was yelling at me for parking in a handicap spot as I unload my kids since I may not give the world some sort of visual confirmation of our need for a placard. There is no membership card for a chronic illness club. I guess it’s best I wait. We’d be okay a while longer, I guess.  I try not to take the kids out alone, it’s too hard on my body. So I thought about another topic; how sad this summer was and how we really didn’t do anything fun. I apparently wasn’t being very positive on this day.

My thoughts were interrupted by my son spitting. Yes, he has a bad habit. I’m not surprised. He has autism and epilepsy, and I have Tuberous Sclerosis to thank for all of that. He does things to make his Mom squirm, like most kids do, it’s just a bit harder to convince him to give up a bad habit. I try to be as patient as I can because I know he has a lot going on. I am not the master of patience yet, but I was getting a lot of practice in the parking lot this day.

He wasn’t interested in much that evening, including his iPad. When we are waiting for a long stretch I usually play a movie for the kids. We got this van specifically for the DVD players. Unfortunately they stopped working. Not great news for me. It’s helpful for times like these when I am at the receiving end of spit. There would be no way we’d be able to fix the DVD system so I tried not to think about it. It would just make me mad. I pulled out the next best thing to the DVD players, my phone. Technology can sometimes be grand and seeing himself on my phone is always grand for him. We took our picture together. We are two peas in a pod, he and I….

The course of my disease is eerily mirroring the one he has already taken. He took a medication that required eye exams every three months to check for vision loss. I am supposed to do the same but we don’t have vision insurance, so I am hoping for the best. He moved on to another medication after that one failed. It is used to treat cancer. He has to have labs done every three months to make sure the rest of his body is okay with the medication. I’m right behind him with Methotrexate and looking to see if I can start, and most importantly afford, to continue to take it after the first of the year. With all of the gloomy thoughts, I’m thankful his smile can put a smile on my face.

I flipped through the photos we took and wondered if my face looked a bit more round than usual. I had been on predisone for a while and I’d rather blame the medication for any noticeable fullness in my face instead of my late night snacking. I noticed how tiny my son looks in the picture. We were at the store so his Daddy could go in to buy him his breakfast shakes. It’s the only thing he will consume consistently. We buy them to supplement his diet. It isn’t cheap but it helps him maintain his weight.

That reminded me to check our bank account. “I hope there is enough in there to buy what he needs,” I thought. I sighed and took a long look at the summer sun. It will be sad to see it go. I wished we both felt good enough to enjoy it. We did miss a lot but we do have this picture together. We can certainly look the part but rarely does anyone really know what’s behind a photo.

There is usually a story behind our photos, as there are stories behind many things in our life that no one knows about. I’m smiling but I am always thinking about our health, money, the future, and sometimes regret. I try not to be negative but it’s hard not to be on occasion. The great thing is that he can always find a way to remind me how to be happy despite the flurry of thoughts that often bring my spirits down. It’s as simple for him as taking a photo with his very best smile. Although it won’t be that easy for me, I am certainly going to give it a try. Someday we may look back at this photograph among others, and I want him to know there was a genuine smile on my face, and he was one of the reasons why. I am blessed for every last moment, even uneventful ones like this time when he and I can take a moment, forget our troubles, and smile. “Cheeeeese!!!”

*d*

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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*d*

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*

It’s Parenting Time!

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Here are a few steps that will prepare you for parenthood. Good luck!

Every time you are headed to the bathroom, make a phone call. Draw out the conversation as long as possible, preferably until the urge has passed.

When you finally make it to the bathroom, set a timer for one minute and make sure you are finished within that minute. (Kids apparently think the world will end if you are in the bathroom any longer.)

After every visit to the restroom, open the door to wipe and flush. As hard as you try, modesty doesn’t last long after the children figure out how to open the door.

Before taking a shower, throw in a few Legos. This exercise will help your feet callous properly before they end up anywhere under foot. It will also prepare you for the toys that will eventually end up in the bathtub.

Much like bathroom time, dinner will also become a blood sport. Learn to eat as much as you can in the shortest amount of time possible. Better still, eat the food cold.

After eating a meal, throw half of what remains directly on the floor or in the trash. Before kids figure out how to eat, the food gets on the floor more than their mouth and once they perfect this, they won’t want to eat.

When changing to a new outfit, find a way to make it dirty. Get used to the idea of food, snot or worse hiding somewhere on your clothes.

When the phone rings, turn up the television or radio louder than necessary. A ringing phone somehow also doubles as the volume on children. Once the phone rings, the volume goes up.

Perfect inefficient multitasking. Parenting demands multitasking but unfortunately, it’s almost impossible. Start practicing now by putting the milk in the cupboard or throw some dirty dishes in the freshly run dishwasher. Yes, these things happen.

Learn to have alone time quickly and be sneaky about it. Try opening the blinds and turn the light on during the deed. If you can perfect this, you may find a couple minutes for each other once you have kids.

Spend a few hours every night talking to a wall. There will be a time when you will wonder if the walls listen better than the kids.

Set your alarm for 3 a.m. every night. Spend the next hour wishing you were asleep. Get used to it as soon as possible. “Psst, you never will.”

Brush up on your math. Kids multiply everything by ten. You will need to be able to translate. They also have no concept of time. Everything will take forever.

Parenting is hard work but so rewarding. Make sure you find time to laugh!

*d*

What Special Needs Parents Want You to Know

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It is often hard for a special needs parent to be honest. We are trying everyday to be strong for our children and those around us. Whether you are close to a special needs family or not, here are a few things a special needs parent would like you to know.

We feel alone.
Isolation for special needs parents is real. When things get difficult, many “friends” disappear because they say the situation is “too hard to watch.” As nice as this sounds, we know we are being “politely” avoided and thus, removed from the lives of these so-called friends.
Special needs parents are also in unique situations. We know others will not intimately know the details of our child’s diagnosis or abilities and this can lead to feelings of isolation. This is exaggerated by other’s unwillingness to learn the basics of the situation.
We need true friends who are willing to stick by us.

We feel left out.
We appreciate hearing about your fun over-night stay or the family vacation but those dreams have quickly faded for us. Don’t mistake our lack of outings with the lack of desire to have them.  Sometimes it is difficult to ask for help. We find ourselves looked over because it is often assumed that we “have too much on our plate.” Let us decide what is too much for us. We are still capable and have the desire to help others, go out with friends, or be included in events/outings.

Money is always an issue.
It is rare to find a special needs family that does not struggle to pay for the rotating door of medical expenses and/or special equipment that is sometimes needed. Neither is cheap and getting assistance can be difficult.

We take your opinions into consideration but we know best.
Real solutions come when time and effort go into a problem. We have logged in plenty of both so sometimes keep the opinions to a minimum and just offer a helping hand.

Teach your children tolerance.
Some special needs individuals do not have the ability to demand tolerance but their loved ones will. If your child teases or bullies our children, expect to hear from us. We are used to fighting for our children and most of us will not hesitate to speak up.

Do not assume our child will “grow out of it” so stop asking.
This is by far the most annoying question special needs parents are asked. We heard this question by nearly everyone when our son was  diagnosed. These well meaning people would ask and seemed to wait tentatively for validation . For them to be okay with the diagnosis, it has to be short-term? No matter the term of the diagnosis, families are dealing with the here and now.

We are upset when you are intolerant of our children, especially for a short period of time.

We are tired.
A great deal of diagnoses carry the fine print of sleep deprivation. Be considerate when discussing your poor night of sleep. Many special needs parents are on years of sleep deprivation. As a result we are often feeling the physical and mental repercussions.

We don’t have all the answers.
We are still learning and every day brings new challenges. We research and ask as many questions as we can but usually a new question follows a solution. Be patient with us, most of us are doing the best we can.

Stop pointing out the negative.
We are well aware of our child’s short-comings. We don’t appreciate pointing out our child’s faults any more than a typical parent.

We need support.
We may not always say it, be we need it. If it sounds like we may need help, we probably do.

Offer to “do the hard work.”
These tasks may require you to feel uncomfortable or lose sleep but these are the things we will not soon forget.

Help us get away.
Most of us live in a constant state of chaos. No one can withstand this type of existence without feeling a little frayed. Stepping in for any amount of time makes a world of difference.

We notice when you stop asking about our children.
Our children may not be on the honor roll or in sports like typical kids but they still have accomplishments. Acknowledge the effort these kids make to do what most typical children take for granted. I guarantee they have worked on these tasks for a very long time.

We need to vent.
We love and are thankful for the opportunity to raise these special children but it is a stressful job. It can be “depressing” for you to hear but this is our reality and we can’t escape it. Please allow us a place to talk honestly and unload. And we want to do the same for you.

Going out in public is hard.
We are on guard in public places. We are aware of whispers and stares. We also know we have the right to public space. Most of us take others into consideration when situations become difficult, please do the same.

Please do not make us feel guilty about our child’s behavioral issues and DO NOT say, “He was good for me until you walked in the door.” Parents are a safe place for kids to fall so it is not atypical for a child to misbehave around parents and caregivers.

Special needs parenting changes the heart and mind. These parents can be the most empathic and patient people you will encounter. They often face a great deal of difficulty with a smile but they are hurting somewhere inside. There is a real struggle for these parents. The guilt of not knowing or doing enough is constant. They often feel like things will never get better and yearn for friendships that will withstand. Most only wish to change the world for the better of their children. We want others to see the true gift of the special needs child.

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