Confessions of a Special Needs Mom

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When my children were born, I wish I was also handed a guidebook to each one. “It’s a boy and here is the complete guide to (insert child’s name here).”  The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child. No doubt my special needs child would need at least three manuals. One for his primary diagnosis, one for autism, and one for epilepsy. I would also need some additional emergency booklets labeled, “What Kind of Seizure is This?”, “Why He Won’t Eat,” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist. Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my special needs child. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard to for me to be honest about the mistakes I have made as a parent.

I have made assumptions on the behalf of my child. There have been times that I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist that he does something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.

I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know that I am strong enough to handle whatever might happen.

I have underestimated his abilities. Sadly, I had already determined that he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations and he can independently write his name.

I have played out his worst case scenario. Instead of thinking that he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can but again, I should not set limits on his potential.

I have distanced myself from him. I know this is normal but I have taken his outbursts toward me personally. I frequently forget that he is at the mercy of his disease and the side-effects of multiple medications.

I don’t always let him fight his own battles. I am guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.

I talk about him as if he isn’t in the room. This is something that I promised myself I’d never do. I can’t assume to know that he does not understand what I am saying. I have to be careful not to make him feel like we are not including him in conversations.

I have not always been patient with him. Patience comes with practice and I have had plenty of opportunities to practice it.

I also have failed to be consistent with the way I handle things. I have not always stood my ground when he demands something in an inappropriate manner.

He needs structure and I have not always provided it. Sticking to a routine is hard for me. I have three other children and my special needs son sometimes feels like two kids rather than one.  It is easy to get overwhelmed.

I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what is necessary.

I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.

I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.

I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase or we do a medicine change and he regresses. It is hard to keep trying when we have to keep going back to square one.

I have failed to see the bond our difficulty has formed. Adversity really does strengthen a bond. We have been through a lot together and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.

I have been a “helicopter” mom. There are times that I would sit on his shoulder if I could.

I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t raise a special needs child. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.

I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.

I have to keep reminding myself that his age on the outside does not match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.

I am overly emotional. I know it is hard for other people to understand why it is a big deal when he independently wrote his name or put together a complete sentence but it is for us. Learning is often an uphill battle for him and we celebrate his victories.

My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly, that may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means that I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder, and give him the best of me.

*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.

Sweet, Sour, and Everything Between

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My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.

Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”

This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.

On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.

He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.

I hug him. “Stop!”

I tell him, “I love you.”

“Quit it!”

One of the other kids sit next to him. “Knock it off, okay?!”

The baby cries. “Stop it, baby!”

He is learning what they are teaching very well. I just wish I could interact with him with less yelling.

My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.

Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill  behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,”  as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.

*d*

It’s About Balance

In life there are many times we can feel as if we love and hate something at the same time. For instance, women can love a pair of shoes while hating how it hurts their feet. I personally love chocolate but hate that I must limit my consumption of it. The same can be said for people like my husband and I who have a special needs child and social media. We love it and hate it. My husband now hates it and has deleted the Facebook app from his phone. I have been known to defend it because of the support groups that have proved to be an invaluable source of information and support. Lately, the negative effects on us have outweighed the positive.

With Facebook and other social media, users sign up to share their lives with other users. If I have learned anything from my high school social experience, it was the never ending drama that goes along with sharing so much personal space with other people. We can hope certain social manners will be followed but that would be silly considering we are “friending” many people we barely consider to be acquaintances. By allowing so many people so close to our personal lives, negative experiences are bound to happen. For us, it has caused disappointments that possibly have my husband finished indefinitely. I am still dipping my toe in the edge. I am involved enough to check in on a few friends but I don’t want to be over involved again.

Over the past seven years since we signed up on Facebook, we have tried to use our manners. We try to avoid arguments, we do not engage in political or religious debates, and we are respectful of the opinions and lives of others. The longer I use Facebook, the more I notice the lack of manners and general respect people have for one another. We have been pulled into fights and insulted. I have had to diffuse situations that blew up on social media for my entire list of friends to see. We tried to play it safe and hoped we didn’t put too much out there, but like most people on social media, we got burned because we assumed our “friends” were friends. Sadly, in some cases we were wrong. Some people just want to read posts to gossip, judge or disapprove of others. It feels like high school all over again. I am sorry but our emotional plate is full and we have had our fill of drama.

Another difficulty I have with social media is the lure to envy. We can all get caught up in it but for us, it can take a pretty hard emotional toll. I realize most people want to use the nicest photo of their family and desire to show off the greatest aspects of their lives but it is hard to stop comparing. Vacation photos are the hardest for us. I know a few couples that snap a picture in front of a great hotel where they celebrate their anniversary every year or families that are full of smiles while enjoying the latest weekend getaway. I keep reminding myself to appreciate what I have and continue to hope things will get easier. I do appreciate everything we are blessed with but it is difficult letting go of certain dreams. I look at those posts and jealousy rears its ugly head. My newsfeed gives me many more opportunities for those feelings to take over and make me feel sad about our life. I truly do want to be happy about my life. I am grateful for the positive changes we have made through difficulty. It is hard trying to continue to make those positive changes while dreaming of some other life.

I think that is what it comes down to for me, I can’t get caught up in some other existence social media provides. It feels like I am balancing two lives. I am working overtime with life one already. I love the continual support that I have found. I enjoy learning more about friends I have made and connecting with old friends but I can’t get so involved that I forget the little people in the same room. So I am choosing to back away for myself and my family.

I love my life in so many ways, but there are aspects I hate. I hate what has been taken from me but I love the compassion for life that has filled that empty space. I hate that I won’t know endless happy outings captured in photographs for the world to see but I love that I can appreciate the happy moments I am given. I love sharing in the lives of others but I hate it when I often feel alone. Just like my rocky relationship with Facebook, I am finding my balance. I have to nourish what truly matters and break it off with those things that bring me down.

*d*

Knee High in a Rant

Sometimes when I have a difficult day  I imagine sitting in front of a tall window dressed in sheer covering. The sun is amber and the wind is trickling in the crack of the window to disturb the sheer. I imagine the blue sky beyond and feel the warm breeze rise up my feet. It pulls at me and dares me to chase. I could run barefoot until I could run no longer. I would then lay back and watch the clouds float further than I could ever go. It would be quiet, it would be peace.

I love nature but find it hard to leave the comfort of my house. It has been hard to handle all my children outside the home with my special needs son. I never know when and what may set him off so it is less anxious for us both to remain here. I save my dreams for days when I have helping hands. There are also dreams I may never fulfill. These dreams are simple but it feels like they were taken from us by a thief. Taken by a greedy disease with it’s fear and unpredictability. I want a life back and it will never happen. I can try to be optimistic, but it won’t change the facts. I grieved for the life my son will never have and now I grieve for the life we have left behind. It sounds selfish but it’s true. Disease has a grieving process very similar to death. Maybe I have yet to reach acceptance.

This window I dream about is something I have been escaping to since I was a child. I had found that I had the ability to escape in my mind when my body could not. I hope my son can figure out how to do the same. I hope he can find a place far from his sometimes sad reality. He will never know a day without medicine. He may never understand why he must live with this burden and I may never be able to explain it to him. He just doesn’t understand but it doesn’t mean he doesn’t struggle because I assure you he does. That is a hard pill to swallow, even for a faithful person. He has purpose and meaning. His life has already made differences, although he may never know.

For all he is, it makes my heart hurt to know that I cannot provide him all that he deserves. I can’t provide him a beautiful day in the park if his disease won’t allow me the ability to help him enjoy it. I am angry that so much has been taken from all of us. I have lost my identity in this disease right along with him. I didn’t want it to take over my life, it just happened. I have to think about it every day. I think about it the four times a day he gets his medicine. I think about it every time he gets on a bus and isn’t able to attend school with the peers in our hometown. I will think about it every time a school milestone occurs and he won’t be asked to participate. Sadly I can’t carry this for him. I can only grab his hand and help him along and when it’s really bad, I can carry him.  Mostly, I wish I could take it away.

I feel removed from this life in a lot ways so please excuse me when I seem put off by the problems I wish I had and forgive me if I can’t be more sympathetic. I am busy staring out my window. My mind is too busy running out the window and toward the sun and imagining a normal existence.

*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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