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Wednesday, September 13, 2017

Things Parents Of Kids With Special Needs Want You to Know

I am sure most of you know someone or have a friend or family member that has a child or children with special needs. I also know most of you really don't know what to say or do in most situations and being a mom of children with special needs I have seen many people completely avoid situations where they would have to deal with us just because they don't know how to act or respond. Sadly I have seen many people disappear out of my life after having children with special needs and know many others who have as well. I want to try to put and end to this and try to help those who don't know how to respond or what to say. I have put together a list of things parents of kids with special needs want you to know.


  1. Don't just say you are thinking about us. Ask how you can help and then follow through. Don't just ask to ask and then when we say what we need help with not do it. We might not even need help, but the thought really does matter. We won't ask you to do anything that you can't do but sometimes we just need a friend. If you know we need help with something, you don't have to wait to ask, just do it. We may not ask for it, but we can definitely use a break. If you are capable of helping us get a break please help. We may struggle to be able to take care of ourselves, so don't tell us to make sure to do that. Come do my laundry, scrub my counters, and wash the walls. Giving food we may not be able to eat doesn't help, give me gift cards to grocery services that deliver. 
  2. To go along with #1, ask us about our kids. We LOVE talking about our kids just as much as any other parent. We love talking about any new milestones or something good that happened. To us things that might seem small to a typical parent could be really big to us and we want others to share in the excitement with you. You might not understand what we are going through, but having others ask about our kids makes us feel a little more like a typical parent. 
  3. Not all disabilities are visible and while our kids could be medically fragile they might not always look sick. Too often I hear someone say "but he doesn't look sick he looks fine to me." This is one saying that makes me cringe. Unless you look and see the scar on my sons head you wouldn't know he had brain surgery, but that doesn't mean it didn't happen. A majority of special needs or disabilities don't have a special look and there are so many degrees of severity that not all kids with a disability are going to be affected the same way. Please be understanding that things can change in a second. We could be outside playing one day and the next be fighting for our lives. There are good days and bad, so on our good days don't think things are "all better" or that we are "fake" or anything like that just enjoy our good days with us and be there on the bad days. Just because you can't see it, it doesn't mean it's not there.
  4. Don't minimize our concerns or worries. Don't tell us "Things could be worse!" or whatever in the midst of our storm. If you can't support us, then just be quiet. We know things could be worse, but at the time this is our worst and we need your support. 
  5. Until you make comments about my child, imagine the things they have been through in their short lifetime. There are so many kids out there that have been through more in their short lives than most people go through in their entire lifetimes. We are not here to judge and these kids do not deserve to be judged. They need and want love just like anyone else. Also know that when others want to say something negative (bully) just remember the above 👆🏼 and try to imagine the feelings that those who LOVE them have been through (sadness, fear, joy)
  6. Having a child with special needs is NOT "the worst thing that could happen"! It's actually a learning experience and a chance to grow spiritually, mentally and emotionally. It's Heavenly Father's "teachable moment". It's actually a blessing. Many parents say it's actually the best thing that's ever happened in their life. I know it has taught me a lot including compassion, patience, and acceptance. Don't look at me or my child with pity, look at us with envy! Work harder one trying to hide your "I'm so sorry face". My child is a rock star and stronger than you'll ever know. It is not "so sad" It is a part of life that we live with but it does not define the life that we live. Don't apologize when I tell you about my child,i know your apologies are well meant but our child is perfect to us ,we love our child as much as you love your child
  7. Stop telling us our kids will be doing xyz before we know it! While some of our kids may just be a little behind and will eventually do those things, there are many kids who will not ever and we have accepted that. Instead of saying they will do XYZ or focusing on what they can't do lets focus on what they can do. our kids are the light of our lives. With doctors appointments and IEP meetings and therapies we hear enough about what they can't do or might not ever do. As our friends help us focus on the good things not the bad. Also please don't mention what my child can or cannot do in front of him/her. S/he doesn't need to know her limits, s/he can put his/her mind to do whatever s/he want to. Don't treat my child like they are any less than "typical" children because they are not. They are just different, like we all are different. Normal is only a setting on the dryer. Normal people doesn't exist. Don't feel sorry or pity my child. Especially in front of them. Love them, treat them like an ordinary kid. Bear in mind some restrictions but let them be a kid! 
  8. Just because a child has special needs doesn't mean they can't talk or understand you. Yes there are many kids that may be unable to talk and some might not fully understand, but don't automatically assume that. If you want to know how they are doing, ask them. They will tell you in whatever way they communicate how they are doing. They may be verbal and tell, you, they might use a communication device, or they may just use gestures or facial expressions but they will tell you. If not then we as a parent will let you know.  on the other end please don't try to "make" my non verbal child speak. If s/he doesn't do it for us at home your not going to get him/her to do it for you. You are not a miracle worker. Don't think we haven't tried everything already. Some kids cannot verbalize their feelings or answers to your questions but they understand what you are saying so please don't talk about them like they aren't there.
  9. Just because you never heard of it  doesn't mean it isn't a legitimate diagnosis. There are so many diagnoses out there that it is hard to know every single one and more and more are being learned about every day. Instead of doubting us, try to educate yourself.
  10. Don't judge or condemn me for decisions I have to make. As parents of special needs children we often have very hard decisions to make. We put a lot of time and thought into these decisions and often have a hard time with our decisions. We often criticize ourselves an may doubt if we made the right decisions, we don't need you to do that for us. We have to remember to give ourselves grace. There are times we will feel overwhelmed and over our head. And sometimes we will have a break down. And it's all ok!!! We are not  bad parents. We all go through those times. We need to give ourselves a break and not be so hard on ourselves.  
  11. We often do not know what the future holds. Asking us what is going to happen next or if they will outgrow something, you might not get an answer. While we may think we know something, we really never know until it does happen. The future is often very cloudy and we have to just take things as they come and take it day by day.  It hurts when people tell you "you have to keep living, keep trying" when we know that certain things will just never be an option and it's not because we gave up but because we just have to keep their safety in mind at all times.
  12. To go along with #11 don't get mad at us when we can't make plans or may have to cancel last minute. We really do want to hang out with you or attend your event, but sometimes things can change very quickly and not allow us to. Our kids health can go from good to bad in the blink of an eye. Do not think we are trying to skip out if we have to cancel last minute. Because things can change so quickly it is often hard for us to be able to schedule things ahead. We also often have to try to work around very important schedules of therapies, doctors appointments and the such on top of normal life. Don't stop asking us to do things even if we might not be able to do much. So many times we often get left out because people assume we won't be able to attend. Just ask even if you know we will say no, we still want to be asked.
  13. Never say "I could never give my child X drug or surgery." We might have thought the same thing being in your shoes but these are our children and our decisions. For some these medicines or surgeries are last things we can do or might be life saving. We don't want to have to do them, but we are doing it because we have no other choice. We want what is best for our children. 
  14. Don't tell us "stop doing such and such and just let them me kids." Do you really think we want our kids to have to do therapies, or go through tests and surgeries? No we don't but for some these are necessary to live as normal of lives as possible or to even survive. If it wasn't needed it wouldn't be done. Doctors aren't going to order things "just because" they order them because they feel they are necessary.  Next time you want to question why we do this or that procedure/appointment you are more than welcome to walk in my shoes.
  15. We need friends too. We aren't weird or scary. We need people to visit us when we are down or are kids are sick. It's a lonely world. Disabilities aren't contagious so don't be afraid of us and our kids, and don't teach your kids to think our children are weird. Teach them that our kids are people too. Smile and say hello to us when you see us out and about in the community. Teach your children and those around you to do the same. It's so hurtful to be stared at.
  16. Inclusion isn't all inclusive. We all want that feeling of belonging. In the special needs community that can be hard to find sometimes. Our kids may not completely fit into a category for one disability or may have multiple disabilities and end up being excluded because they are "too complex" or "don't fit." When trying to make accommodations we need to include all. Not everyone with a certain condition is going to be exactly the same. That doesn't mean they should be excluded, we need to make them feel welcome and help them however we are able. When you can, include people with special needs in neighborhood play dates, parties, etc. So often I hear of children with special needs being left out of parties or people refusing to go to parties of those with special needs. They are people too, you wouldn't like it so do you think they do?

  17. Always advocate. Go to every IEP meeting, take advantage of any and all free resources. If there are meetings in your area, make use of them. Even if you are not a special needs parent, educate yourself and help educate others. 
  18. We would like people to ask questions instead of stare.  Most people think it would be rude to ask but usually we wouldn't mind one bit. It is rude to stare, not to ask questions. We would love to get awareness out there.
  19. If you see us in public don't automatically assume things about my kid. What might look like a kid having a tantrum could be a kid having a meltdown not being able to handle their environment. A kid may look "too big to be in that stroller" but that child may not be able to walk or may struggle with walking. Thy might tire easily. When my child is having a meltdown he's not being a spoiled brat. It is not due to lack of parenting or discipline.
  20. We really don't need  unsolicited medical advice. While we appreciate the concern, it sucks to constantly explain and defend medical treatment plans and choices. Our doctors have gone over our options, we know what there is and especially do not suggest treatment options when you have zero medical knowledge or training. Our patience gets used up on our kids - so we don't have any left for "helpful advice" givers... Don't. Do. It.
  21. Don't take anything for granted with healthy children. Some of us hurt so much for our children to watch the simplest abilities come so naturally to others their age while they work their butts off to achieve just a piece of those abilities.
  22. The special needs our kids have doesn't effect just them it effects the whole family. Many of us have other kids as well. We have to try to balance our time with our typical children and with everything that comes with special needs kids. It can be very hectic. It is a strain on marriages. Sadly many marriages have ended because of the strain it puts on relationships. 


20 comments:

  1. I have been lucky enough while in school to be able to volunteer for Special Olympics, and also to see kiddos with special needs in the clinical setting, and their joy in life is seriously the most infectious and magnetizing thing. I can't help but be happy when I am done working with them and I can't wait to work with these precious people after graduation!

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    1. Getting to work with special needs children is amazing. i worked with special needs children when in high school and am now a proud mom of 4 special needs kiddos.

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  2. I have two kids with needs and this is all absolutely spot on. Amen to the unsolicited medial advice, ESPECIALLY when it's to "try XXX oil."

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    1. Yes so many times I have been told that feeding them something or not feeding them certain things will fix them.

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  3. This is a fantastic list, and so helpful!

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  4. I treat kids with special needs just like any other kid. Because kids with special needs are also just kids too. They of course have certain needs, but who wants to be signaled out as "special." Kids are kids, right?

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  5. I volunteer in my daughters class and their is a young man with special needs.This post is excellent. I will share with her teacher and other volunteer moms.

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  6. This is such a long list and the fact that you have to deal with even half of these things is not okay. I think so many could learn from this. I have friends with special needs kids and I get so frustrated with how others treat them and their child.

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    1. It really is sad that these things have to be addressed.

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  7. I love this article and it is really really important. Sharing!

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    1. Thank you. Yes I find it very important to try to get this awareness out there to everyone.

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  8. I think all kids are angles. They are the biggest gift in our life. And children with special needs are able to do everything they want. I'll share this post to my friends so that they can read and understand.

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  9. Some of my best memories from high school are when I volunteered with the special needs kids at our school. We would go with them on field trips to places like the bowling alley and aquarium, and there was even a prom for their class each year. Honestly, working with these kids really changed my perspective. Thinking back, I think they really just wanted to feel included like you mentioned.

    I think most people might not know how to react around special needs kids. I will go ahead and share this post so more people can have a better understanding!

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    1. I did the same thing in high school and it was amazing.

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  10. It is so important to be understanding and patient with these kids and their parents, I am so glad you covered this, some people feel so uncomfortable but it just takes understanding

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  11. This post is spot on. As someone who has been severely Ill in the past I can totally relate to all of this because I also felt this way and would have loved the people around me to know all of these things. This enlightenment is very important.

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  12. Brilliant post. I am so happy that you wrote it and feel that many folks will benefit.

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Thank you for commenting

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