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