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*

Love is Stronger Than Pain

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I was thinking about what Rheumatoid Arthritis (RA) has taken from me today. It has taken many things; my peace of mind, health, mobility, strength, and much more. It has been hard to accept that just a couple years ago I didn’t have to worry so much about my own health, the peace of mind about being able to take care of my own children was secure, and I knew I had the physical and emotional strength to take on whatever life threw at me. Now most of my day is centered around pain. I ask, if I stretch, exercise, or take the right medication or supplements, can I relieve this pain? But the day usually begins and ends the same, in pain.

I am certain I can handle what the disease takes from me, what I don’t like is what it takes from my kids. Above, I posted a picture of me holding my youngest daughter. She is our surprise baby; you know, that baby who comes along and yells “surprise” a week before a scheduled hysterectomy. My husband and I determined we were finished having children and I needed to have the surgery to take care of some health issues that have plagued me for many years. These problems were so disruptive, we are lucky to have even one child, we have four. When our youngest snuck in under the radar we were very excited. We were shocked and thrilled when we finally conceived our first and every child thereafter was equally, maybe even more exciting.

I think I do alright as a mom. I love and have loved every stage of their lives thus far, but I especially love the toddler years. I personally think too many people focus on the possible tantrums or stubborn nature of a toddler and miss all the incredible things they are learning and accomplishing in the first short years of their lives. I was always the proud mom to carry her babies around on my hip. The first three were glued to my hip as long as they’d allow me to pick them up and put them there. Unfortunately for my fourth, she hasn’t had the same. I am unable to pick her up, let alone carry her like I could with my other children and that just makes me mad. She is frequently raising her arms to me and saying, “up” and I have to say, “Sorry baby, mommy can’t pick you up right now”. Yes, I know I can find other ways to pick her up and I know it isn’t a necessity but I want to do it! I hate that my RA has taken this simple joy from me. I have accepted and smiled through many things that have spewed into my life but I am neither going to smile or accept this one.

As you can see, I try to pick her up as much as I can, pain or no pain and I often try to take a picture. I want to remember that I was blessed to have had babies on my hip. I am privileged to raise my children and I will keep doing my best despite what this awful disease does to me. I will pick them up (try to put them on my hip), hug them, kiss them, and smile at them, even if the entire day is experienced in pain. When I think hard about it, my life isn’t about me, it’s about who I have been gifted to love. The love of a child is far more powerful than any pain some awful disease tries to throw at me.

*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*

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*

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.

Harping On My Fellow Drivers

(And why I don’t look like the cute pink guy shooting eggs from Super Mario 2.)

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Yep, I’m that angry guy.

We moved to a new school district a year and a half ago. I like the school. It has an excellent rating, the staff is friendly, and the community is involved in school activities. I have no doubt my children will be getting a great education. There is one problem…… the drop-off and pick-up area is a disaster. The school is new and situated a distance from the road. There is a single drive to the building. During pick-up and drop-off, there is always a line of vehicles down the drive.  The drive goes up to the school, takes a left turn and runs along the front of the school. To leave, another left is made to the adjacent parking lot and back out to the drive. This would be a great idea if most drivers had common sense.

At the beginning of the year a newsletter comes out and a portion of it explains the procedure for picking up and dropping off students. The same speech is also given at the PTO meeting prior to the first day of school. Vehicles are to pull up as far as possible to allow cars behind them the opportunity to also pull up. This would make the process more efficient. There is an extensive sidewalk along the entire front of the school. The idea is for children to utilize the sidewalk so multiple cars can be loading or unloading at the same time. This never happens. In the morning, every other car stops directly in front of the front door so their children won’t have to walk. There is ample room to pull up beyond the front doors but people must think it may cause harm to ask students to walk a small distance to the door. If I have the opportunity to pull forward, I do it hoping others will follow. That never works.  In the afternoon, the kids find their way to the waiting cars and that sometimes speeds up the process. The problem in the afternoon is the one car that parks in the loading area. They also refuse to pull forward and this causes problems. Other drivers are unaware that the vehicle in front of them will not be moving and after waiting, they put their car in reverse so they can leave and allow others to pull forward. With kids walking around the loading area, this is concerning. Bad weather makes all of this worse. Last year I had to call the school and explain why my son was tardy. It was a rainy day and because of the increased traffic, it took twenty minutes to reach the front door. I learned to leave my house no later than twenty five minutes before school starts and I live in town.

It have learned to tolerate this disfunctional process but today, I couldn’t take it anymore. At pick-up one woman decided to park three cars in front of me. There were several cars waiting behind me. The line was not moving. When one of the two cars in front of me put their car in reverse,  I knew it was another parked car causing the slow down. I pulled up behind the parked car. My son came and got in my vehicle. On the way out, I rolled down my window and told her she may want to rethink parking where she had because it was hard to get around her. I also pointed out that there were several cars waiting behind her to pick up children. The woman looked shocked. I didn’t yell and I wasn’t angry,  I clearly told her what others may have been afraid to say, or at least pointed out what her common sense didn’t. I passed her and saw the superintendent in front of the building. He knows me and he knows what I drive because of the special circumstances with my special needs child. I guess he will know who to contact if he gets a complaint.

I immediately felt remorse as I knew the kids arguing in the car and the stress of my day probably pushed me over the edge and prompted me to say something. I realized I had not considered her circumstances. She was smoking and seemed to be casually waiting but I shouldn’t have assumed anything. This sums up my life. I believe I have a great deal of tolerance for many things. When I have finally had my fill of some sort of injustice, I speak up and fill with regret. I worry if I hurt someone’s feelings and it really upsets me to think I could have made someone cry. I admit that I am a bit intolerant of other drivers and I have liberally used my horn to vent my frustrations. I recently aired my grievances when another driver became impatient and narrowly squeezed between my vehicle and a mail truck. In those moments, I don’t feel as bad but I still worry. After watching drivers for over a year use very little common sense when negotiating an area full of cars and children, I had reached my boiling point. I now know that I must keep my frustrations under control in the future before I earn myself a reputation for being the crazy parent who yells at other parents from my vehicle.

I imagine everyone has their weaknesses. I am pretty sure mine is not other drivers as much as the notion of people who do not consider anyone but themselves. Maybe that is why today bothered me and why it bothers me every time I speak up, I don’t want to turn into one of those people. To make up for it, my husband suggested I do something kind for someone else. I think the world would be a much better place if we all spread a little kindness first. I think I will need a lot of practice spreading that kindness behind the wheel. I am sure other drivers will continue to give me plenty of opportunities to practice restraint.

*d*

Fighting Fear with Two More “F” Words

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We moved recently and the best feature about this house is our front porch. We installed a porch swing shortly after our move. I like to watch the cars and people go by but I especially enjoy sitting on the swing during a storm.  I like feeling the chill of a cold front rushing along a spring storm. I will eye the trees to see if the old saying is true about leaves turning over before the rain. “When leaves show their undersides, be very sure rain betides.” I love hearing the rain on the windows and the feel of the moist wind while impatiently waiting to hear a crack of thunder. But there is a limit to my love of storms. I don’t like damaging storms and I am especially afraid of tornados. I have never seen one but my childhood was full of tornado hype. Why? I had two older brothers and what kind of brothers would they be if they didn’t exploit their little sister’s fear? I admit, they were good story tellers. Everyone from Freddie Krueger to Chef Boyardee came in on a tornado to haunt my dreams. (Yes, you read that right.) The actual chances of being amidst a tornado are pretty slim but with children, facts don’t seem to matter. The idea of what to be afraid of usually comes from the first person who plants the seed of fear. My brothers were farmers with pockets full of seeds. I am almost ashamed of the many obsurd fears I had as a child.

My oldest is eight.  He often comes home from school asking if things like warewolves and vampires are real. Even with his limited personal knowledge of such things, other children seem to know enough to make him squirm. I admit, he is gullible. We limit the nightmare inducing programming, probably because we enjoy our sleep. The Indiana Jones movies were popular when I was his age. My parents didn’t allow me to watch some of the more graphic parts of these movies, if we can even classify them as graphic by today’s standards. I was exposed to the horrors of life at the times my parents felt I could handle them maturely. I was probably watching a limited amount of Rated R movies by the time I was as a fourteen. I will probably do the same with our children. (There are the fears we must explain appropriately to children as soon as possible but maybe I will further discuss those in a later post.) So as soon as I was allowed, I wanted to watch all the parts of Indiana Jones I had missed. I wanted to know for myself if there was really something to fear. I will note that I have since viewed the films numerous times and they remain some of my favorites today. I learned to fight fear with knowledge and what facts could not explain, I relied on faith.

These days I obtain a great deal of my knowledge by being a Google junkie. I am not proud to admit my vast knowledge of useless movie info or what syptoms may or may not be associated with certain ailments. During my fourth pregnancy I could be counted on to stuff my head with pregnancy related articles. I should have been an expert by then, more like a baby factory, but it puzzled me to why I still felt the need to investigate. I ended up blaming heredity. When my dad was in charge of the remote control we would be stuck watching PBS, but then again, we only had five channels. And my mom, she owned a large medical dictionary. Since we couldn’t afford impractical  doctor visits, she relied on her outdated mammoth to self-diagnose our illnesses and reassure us we weren’t going to meet an early demise . As much as I claimed that I would not turn into my parents, my viewing choices are reminiscent of PBS and I am reminded of that larger than usual medical book every time I open my WebMD app.

Adulthood reminds me of why I searched for the truth when I was a kid. I am closely effected by three incurable diseases. While I do admit my own fear of these diseases, I won’t be crippled by them. I am fighting with facts and relying on faith. I will keep searching and asking, but I will probably never be satisfied. I know all the knowledge will never rid these diseases, or even tornados, from my life but I have the power to control my fear. The control over fear must also be rooted in faith because sometimes no matter how much I dig, there are things I cannot control. So I choose to teach my children about fear in a positive manner. Unlike those times as a kid, I cannot run screaming every time the unknown jars my senses. I have to teach by example and I am frequently tested watching my son lose control to epilepsy. I don’t consider it bravery as much as necessity. Once fear comes over my face, it will soon be on theirs.

I will always be afraid of tornados but I am not afraid of every thunderstorm as I was as a child. I have educated myself and know the difference. I now enjoy what I once feared and have prepared myself for the worst.

As for the leaves turning over before a storm, deciduous trees, or leaves with soft stems, often turn over as a result of the humidity that precedes a heavy storm.

*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.

*d*