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Monday, July 7, 2014

Special Needs Awareness-Not All Disabilities Are Visable

As a special needs mom this topic comes up very often. Most people who don't deal with special needs often just think of kids in wheelchairs or kids with something visually different such as Down Syndrome. They often forget about the disabilities that are not very visual or may not always be seen. My son has Epilepsy, Failure to Thrive, Global Developmental Delays, Speech and Language Delays, Sensory Processing Disorder, feeding problems, he has 3 genetic mutations, low muscle tone, and gets sick easily. He does wear braces on his feet, but on first look at him you cannot tell there is anything wrong with him, but at 20 months old he has gone through a lot more than most people go through in their lifetimes. Kids like my son with the invisible disabilities often get looked down upon. If a child with SPD or Autism has a sensory overload and has a meltdown, people who don't understand just look at them and think they are being bad or that the parent is a bad parent and not controlling them. This is NOT true. This child cannot control this. Imagine what they feel. To them just a few people talking mixed with the radio in the store and hearing the registers beeping is like a concert standing right next to the speakers with someone pounding on your head. They get overwhelmed easily. There may be too much sound, smells may be too strong, the lights may be too bright. These children and their parents are in no way bad. You cannot see genetics. Sure some genetic problems such as Down Syndrome or other Trisomies have a certain look to them, most genetic problems do not. Other things such as epilepsy, cystic fibrosis, gastroperesis, autism, heart defects, intestinal issues, failure to thrive they do not have a certain look to them. You cannot look at someone and tell they have these problems, but just because you cannot see it doesn't mean it is not there. Many moms are accused of having Munchausen by Proxy because people cannt physically see what is wrong with these children. Sure there are mom's out there that do make these things up, which is sad, but for those of us really dealing with it why would you want to make these things up? Do you really think we want our children to have to see Dr after Dr, get test after test done, be in the hospital and watch them suffer? NO! Also, with some of these problems kids have good days and bad. You might see them playing like a normal child one day and then the next they are in the hospital. No we are not making it up, no we are not making them sick. These kids can change so quickly and often. Another thing that is often said as far as failure to thrive goes is "your child doesn't look sick." "just feed your child" "they are just small it's ok." "they are bigger than my child they dont have FTT." first off there is a difference between a child who is just small and a child with FTT. A child can be small, but still be on their curve. A child with FTT may be completely off the charts, and often drop off curves they do not stay on a growth curve. My son's curve looks more like a printout from a heart monitor. Also you cannot force a child to eat who cannot eat. Also many of these children have problems eating. they may have problems chewing and swallowing, they may have low muscle tone in their mouth, they may aspirate and cannot eat without getting sick. They may also have gut problems such as gastroperesis. A child with developmental delays is not dumb. They may just have physical limitations. They may be delays in fine motor, gross motor, speech and language or in all areas. You cannot tell just by looking at them. Some may wear braces or may use a wheelchair. Some kids may only need assistance some of the time. Just because a child can walk, they may need to use a wheelchair at times. This is not to get sympathy and it is not for fun. They might tire easily or it may be for their safety. They may run away if not restrained or they might have seizures and need protection. They might be able to walk, but long distances they cannot do.  Last but not least... Im not here to compete with other mamas about whos kid has the most health problems, whos kid is the sickest, whos kid is on the most meds or has the most therapies etc!!! This is not a contest. We all fight our own battles and should be here to support each other, not compete. I really just wish people would really step foot into a mothers shoes who has a special needs child and all the challenges and heartaches we go through

43 comments:

  1. I'm not a mother yet, but I know being one is hard work. I can't even fathom how hard it would be for a parent of a child with special needs. Especially when it's not a visible one.

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    1. It is very difficult and sadly there is a lot of judgement in this world by kids and adults

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  2. My little brother is autistic and has dandy walker syndrome, and while his disabilities are pretty apparent I have worked with lots of kids whose disabilities aren't. It's great that you're promoting awareness about this, because sometimes people just assume that someone is being a bad kid when really they have a disability you just can't see.

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    1. yes it is sad that people just automatically assume

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  3. I am not a mother and I can't even imagine that sweet face having special needs. It has to be super hard and when you can't physically see anything, I am sure not many people are understanding.

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    1. no they are not and sadly we have even had family members who do not see him a lot doubt us

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  4. This is so true. The invisible disabilities. Our oldest son is on the Autism Spectrum, our youngest two (and myself) have SPD. It can be hard when people are looking at you like you can't control your children when really they are just overwhelmed.

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    1. Yes all 3 of mine have SPD and the stores often overwhelm them and they often have meltdowns and when one does the other 2 usually follow and so I am in the store alone with 3 crying screaming kids getting a lot of bad looks

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  5. Yes. Yes. Yes. To everything you said. My oldest son Wyatt has speech delay, sensory processing disorder, etc - and my youngest was born with clubfoot. It's amazing the ignorance people in public can have - and it's awful when you have to deal with it. Thank you for speaking out!

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  6. I cannot even imagine what you go through. I have so much respect for parents with special needs children.

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    1. I always had respect before as I have worked with special needs children in my high school years, but never would have imagined going through it myself but I wouldnt have it any other way

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  7. At my internship I worked for the Division of Developmental Disabilities and worked in the children's unit. I always had such respect for the parents, for all they do, for everything. You are amazing!

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  8. I could not imagine. You only receive the challenges that the Man knows you can handle.

    Katreena

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    1. That is very true...He will not give us more than He knows we can handle

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  9. How awful for people to be judgmental. It's unfortunate how many ignorant people exist in this world, and they're often quick to open their mouths. I'm sorry you've had to deal with that, but your son is absolutely adorable and looks like such a joy.

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    1. Thank you very much he is quite the joy to have around and cheers me up when I am down

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  10. I'm not a mother yet either and this both terrifies me of being one and inspires me by how strong you are. Thanks for sharing!

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  11. Thank you for sharing this, I'm sure anyone in a similar situation will take a lot of solace and inspiration away from it. I agree with the above, your son looks a joy!

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    1. thank you he is a great joy and keeps his spirits up desite all of this

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  12. Thank you for sharing this! And kudos to you for handling this the way you do! Also your son is adorable!

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  13. Such great things to keep in mind. Thank you for sharing!

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  14. Your little guy is beautiful. Thank you for sharing something so close to you.

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  15. Wow, I can not even imagine but you are doing a great job just by loving your baby boy

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  16. People are often far too quick to judge. They don't even consider anything other than what they can immediately see. For that reason their opinions should be disregarded.

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    1. yes sadly they are very quick to judge as I often see

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  17. Love this! Your baby boy is precious! I do behavioral therapy with children with autism and down syndrome and the community has completely changed my life. You are fantastic! All the hugs to you and your baby!

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    1. thanks so much. I always had an interest in the community of special needs and in high school even worked in the MR/DD room and loved it.

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  18. This post hits really close to home for me as my older son (He's 10) is Autistic. I've gone through stuff like this so many times, especially from people you least expect, like family and friends. A lot of it comes from a lack of understanding or knowledge. It is our job to protect our children and educate others. I am so proud and happy that you are speaking up for your son. You are and will forever be his best advocate as he grows up.

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    1. Yes it is very sad when family and friends are the worst. And it is true it often comes from lack of understanding and sadly sometimes they have the lack of wanting to understand.

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  19. My brother has a speech disorder and both he and I have sensory issues. I've been that person who couldn't take the talking and the radio at the same time and it's so frustrating to explain to people that sometimes the noise just becomes too much and I can actually explain it to them. It's so sad to hear the stories of kids who can't explain it.

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    1. yes it is and even explaining it can still make it hard for those who do not experience it to fully understand.

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  20. I love this! Thank you for sharing and making people more aware! :)

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  21. I am a school teacher and I love to read about this. Thank you!

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  22. Thank you for spreading the message of awareness of the invisible disabilities. I think those are the most difficult to deal with - the invisible struggle, counterbalanced with the any obvious and obnoxious responses from many who lack compassion.

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  23. Thank you for sharing. Sometimes it is so easy for people to overlook disabilities and to not realize that they are difficult to deal with.

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  24. Kudos to you. You are an inspiration! AMber N

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