What I Wish The World Knew…

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*This post was originally published in 2012 under the title “Dear Society… I Need You To Know…”  It seemed to resonate with many people, and we wanted to share in again in honor of Autism Awareness/Acceptance month.*

Kris and I have people ask us all the time what it is like to have a child with special needs. Most often, we lie. Yes, you heard me correctly…… We lie…. We say things like, oh it’s a little stressful sometimes but probably not much different than yours. Or we say it’s definitely interesting, never a dull moment. Because although all of that is somewhat the truth, we know that most often when asked, they are trying to be nice, and bestow kindness. They don’t really have the time or interest to listen to our thirty minute dissertation to their question. So I thought it might be beneficial to share with you what we as parents of special needs would really like to share with you if we thought you had the time to listen, if we weren’t so ashamed, guilty, and embarrassed of the way we felt.

Now understand, I am voicing my opinions only, I have not taken a poll from others, nor have I done research. But I do feel confident that what I am about to share with you is commonly felt by other parents in my situation. There are over 6 million children in the United States who qualify for special services, which could range from medical issue, autism like Will, cerebral palsy, Down’s Syndrome, and many many more. My hope is that after reading this blog you will have a better understanding of how life is different for those of us with children with special needs, more helpful to those who aren’t as lucky as you, and defiantly more aware and grateful for what you do have that you often take for granted.

***** disclosure: Please know that the things listed below is a comprehensive list and is not directed at any one person, organization, or group of people. We are very fortunate to have great families, friends, and supporters. The points mentioned below are from my point of view. I am not speaking for Kris, although I am sure he would agree with many of them….. ******

1. I am always tired……. Not just physically, but emotionally, spiritually and in every way possible. Parenting for any adult is quite overwhelming at times, but parenting a child with special needs takes it to a totally different level unexperienced by parents of typical children. Our child’s successes can sometimes be few and far between, and trials may occur everyday. We celebrate small victories that typical parents would find unusual and are jealous of many things parents take for granted or dread. All of these things in addition to the fact that many special needs children do not sleep like typical children, our children often sleep very few hours a night and often very sporadically. Many of them require parental supervision, therefore when the child is up, the parent is too!!!

2. I am not sad….. Please, please know that although life didn’t turn out quite like I had expected, you learn to accept and make the best out of the situations God brings you to. Although often difficult and not exactly what I thought was in the job description, it is what it is and our child brings joy in ways you could never imagine!

3. I often feel guilty. When a family has a special needs child like us, and that child has siblings, as parents we often feel guilty because the special needs child’s needs are often so demanding or time consuming that we feel like we neglect our other children. The feelings of guilt remain even after years over the constant anguish questioning if we could have prevented it, what we could have done differently, or if we could be doing more than what we currently are to help make things better.

4. I often feel disappointed. Its an emotion that I have learned to accept almost daily. Disappointment that my child is seldom invited to birthday parties. Disappointment that my child isn’t able or not interested in the things most kids his age are. I am Disappointed when situations we thought we planned out perfectly still go awry despite our best efforts, and disappointed when others don’t treat him like I think they should.

5. I am jealous…… Yes, I admit it! I am jealous of the fact that tomorrow your child will be able to verbally tell you Happy Mother’s Day. I am jealous that your family goes on vacations without having to consider every minute. I’m jealous that your child makes the honor roll, sings in the choir, and plays sports. I’m even jealous of the little things like taking an afternoon nap, eating bread every meal, and hearing about your child’s day at school.

6. I am fearful….. I am fearful for my sons future. I am fearful of what will happen to him and where he will go if something happens to Kris and I. I am fearful that I am not doing everything I can to teach him what he needs to know to be successful and independent. I’m scared he will really never know how much we love him and how proud we are of him. I always fear someone will take advantage of him when I am not around.

7. I am human….. Although I am often told “You are supermom”, “I don’t know how you do it”, and “your a better person than me”…. I am only human. I don’t see myself as any of those things. I see myself as a huge failure most of the time. I do what I do because that is where God meant for me to be. There is nothing heroic about it!!! I am simply a mama who loves her child and does everything in my power to see that he has everything needed to be happy!!! Somedays I am better than others for sure….. But still human….

8. And because I am still human…… I have emotions….. I am hurt when my child lashes out at me when he is overstimulated, angry or confused…. Physically painful yes, but more so emotionally pained… It hurts my feelings when my child is mad at me. I feel embarrassed and who wouldn’t be when your child pee’s of the slide on the playground, throws a fit in the store, or picks food up off the floor and tries to put it in his mouth. I get angry when people stare at me like I am a horrible mother and look at Will like he is a monster, make snide comments, or threaten to call the police or DHS and never once ask if they can help.

9. We are forced to live one day at a time while planning months in advanced. When you have special needs children you must consider every angle, every possibility, and every problem that could arise. Every detail of our day is well thought out and planned. From how bright the lightening is, to the noise level, how many McDonald’s you will pass on the way, what is on the menu, to who you might see that isn’t in their normal environment. All of these are considerations that take place everyday, several times a day.

10. Activities are limited when your child requires constant supervision everywhere he goes. We often don’t get to participate in adult functions due to not having a babysitter, or child care isnt provided. We aren’t antisocial, we don’t dislike people, and we aren’t just homebodies. We just have
Unusual circumstances. Please don’t avoid asking us to do things, or invite us to your functions, we try to participate when we can.

Now, that you have a glimpse of what it is like, you might ask what can you do to help the families you know that have special needs children….. Well, I was hoping you would ask….. So here are some suggestions!

1. Please don’t use terminology such as ” Riding the short bus”, “retard”, or “one crayon short from a full box” when making conversation with special needs parents. Despite if you are using it as tongue in cheek humor, many of us are offended.

2. Don’t ask us questions, make statements, or engage in conversations in front of our special needs child that you wouldn’t ask or say in front of a typical child. Just because they can’t talk, appear as though they are not listening, or seem incapable of understanding, they are still a child and deserve to keep their innocence.

3. Reach out to families and offer your help even if they don’t ask. Offer to pick up something at the grocery store if your already going, offer to run a sibling to practice if it’s on your way. Envite the siblings over to play with your children. If you made too much chili the night before and have enough for another meal share it with the family. Other things include sending a thinking of you card, ask specific questions about their special needs child, offer to sit with the child if you feel comfortable to allow the parents to go to dinner for date night, or to take their other children somewhere.

4. Teach your child empathy. Teach them that we all have differences but we have lots of things that are alike too, such as their personality traits, hair color, cartoons or activities they like, and preferred foods.

5. Find books on special needs children. There are many available and I would be happy yo make recommendations. There are many specific topic books as well on Autism, Sensory Needs, ADHD, Deafness, epilepsy, and Down’s Syndrome just to name a few. The more your child knows about the disability, the characteristics, the dangers, and the behaviors the less intimidated, fearful or embarrassed they will be, the more understanding and compassionate they will be and the more likely they will be to befriend, help, or stand up for children like mine.

6. When you see a parent in public who is having difficulties, offer your help. It could be assisting them to put their groceries on the check out counter, or the full sacks in the buggy, if your out in the parking lot offer to assist if they need it to keep their buggy from rolling away with their groceries in it while they are putting their child in the car.

7. If a special needs child does something inappropriate and the parent is chastising the child or instructing the child on what they did wrong, please do not interject your two cents or okay their behavior. For example, if my child gets your drink, it is not okay, if he gets in your purse to get candy, that is not okay…. That is stealing!!! Just because he has a disability, it is not an excuse to allow him to do it or dismiss his actions. We can’t let anything that is inappropriate slide by or he thinks that is acceptable and he will continue to demonstrate that behavior. We live each day by the motto “If it is ever inappropriate it is treated as though it is always inappropriate”.

8. My child isn’t contagious…. He isn’t going to rub off on your child. Please don’t yank your child away from mine at the park, or at chuck e cheese because he is squealing and excited to be riding the Barney ride and he is 11. Yes, we know he is really big but don’t you do everything you can to make your child happy???? I do too!!!!

9. Don’t ignore a special needs child or act as though they are not there. Despite their disability all humans crave attention, warmth, kindness, and human touch…. Sometimes all it takes is a smile to make their day or a quick hello….

10. Never say to the parent of a special needs child, “but they look so normal”. To us they are normal, they are how we know them. We love them despite their disability, quirks, medical issues, or behavioral problems.

11. Do not ever say, respond or act like it isn’t “fair” that a special needs child gets special accommodations, or modifications and your child doesn’t…… I would gladly give your child every advantage, accommodation, and modification I could if the roles were reversed….. It is a sad world we live in when parents think it isn’t fair when special needs children are allowed to go to parties such as accelerated reader for less requirements than their child had to meet….. If you think that’s unfair, imagine how unfair I must feel that your child can talk and mine can’t!!!! What is fair about that???

12. One last thing……. For some reason society believes that there is a huge pay off for having a special needs child. A common belief is that many parents falsify their child’s illness or disability in order to get a pay check. Although I am sure there are those that manipulate the system just like with welfare, and unemployment, I doubt the payoff is good enough to make that deal. However, there isn’t that much money in it. Raising a child w severe special needs is very expensive not to mention we will be financially responsible for our child until we die. That is what money received from SSI goes towards, future planning, other expenses, equipment etc. I promise it isn’t a drop in the hat when you consider all the expenses….. For instance, this summer when Will is out of school, it will cost us over 4,000.00 in child care for him alone!!!!! And there isn’t a fund, grant, or govt program that pays it for us. But in order for my husband and I to work when school is not in session we have to have a full time caregiver.

******* one other thing you can do for Special Needs Families is to pray for them on a daily basis. Pray that God will give them supernatural rest, peace, and grace. That he would fill our hearts with love, grace, and hope to accept all things that come our way….. Pray protection over our children that God would place his angels around them with a hedge to prevent anything from coming against them. ********

Thanks for reading! I’m sorry it was so long. I would love to hear your comments, thoughts or opinions. Feel free to comment or send me message.

I hope this was helpful to you and gave you a new understanding and perspective

Be blessed,

Brandi

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Comments

  1. Nan Nance says:

    What a beautifully expressed message from your heart to ours! As a pediatric RN, I wish all healthcare workers would avail themselves to information such as you and your husband provide. We’ve heard from our Zach what an amazing young man Will is! Blessings to you & your family; thanks for the eye opening glimpse into your daily challenges and rewards.

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