Skeletal Dysplasia

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Skeletal Dysplasia
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    My son was born with 2 disabilities

    My son Brayden will be 13 at the end of this month. I found out he had some type of skeletal dysplasia when I was about 24 weeks pregnant with him.We had birth to three therapies ready before he was even born. When he was born, he seemed healthy and was developing normally (smiling & eating) but then he just seemed to slow down or even stop progressing. He couldn’t sit up until he was almost a year old and didn’t walk until he turned 2. He has no words at all despite years of therapy. He’s not potty trained yet either. He has a lot of sensory problems and behaviors. He is scared of hand dryers, birthday parties, lying down to change his diaper on a changing table , & sometimes stairs. He smears feces on his walls, carpet, windows & bed and i have even brushed it out of his teeth. I keep adaptive clothing on him that prevents him from having access to his diapers (onesies & zip up sleepers & thankfully he doesn’t have the fine motor skills to get out of them lol) He’s supposed to be in the 6th grade, but our board of education is so messed up they won’t let him go to the school in his district because “they don’t have the resources to handle him” which i know is untrue because I know another child that has similar diagnoses and she goes there. They want to send him to a school an hour away and he’d be on the bus early in the morning & late in the evening (school board doesn’t care). Anyway, I just pulled him out and started homeschooling him about 8 months ago . We do ok, but I feel like we could do better. Respite is almost impossible. I’m pretty much on my own every single day. I have no babysitters and no help. My husband works long hours and I have 2 other children that are older than him. I just feel overwhelmed every single day. I love him so much, but some days are very hard with meltdowns and behaviors plus I have to keep him safe. He’ll go outside or eat things he shouldn’t and even puts things up his nose. We go to Cincinnati childrens for genetics and they were hoping to find out what caused everything. They did all kinds of tests and everything came back normal. They think he has a chromosome disorder that mimics autism and causes severe mental retardation. I really wish they could identify the cause because my girls eventually want children of their own, but they don’t want to risk their child struggling like Brayden and I don’t blame them. I know they love him, but they also see his bad days and struggles. I do have sort of a support group in the challenger baseball community so that helps

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    Hi

    I’d like to meet people who have or a relative or know someone who has skeletal dysplasia. My nephew suddenly stopped growing and he was diagnosed with this genetic disease. I’ve had 3 professional medical opinions and none have given me any hope to increase my nephew’s height. Has anyone found help to increase height? I’d certainly appreciate any guidance. Thank you! #GeneticDisorders

    Post

    Celebrating Differences

    Children are born innocent and naive. They don’t notice differences except those that matter to them…their mother’s voice or smell, the sound of their dad laughing, favorite toys, the face of the family dog. It is only as they grow and develop that they begin to see things differently. They start to notice we don’t all look the same or talk the same or learn the same. Children are born ignorant. It is part of their innocence. It doesn’t last forever.

    As a mom, it’s amazing to watch my children grow and learn~to start to leave their innocence behind and explore. It is also scary and, at times, overwhelming. I take my role in their growth very seriously. I truly enjoy the billions of daily questions about the world around us, even when it’s hard. There is an age, however, where questions become more sincere and the demands for answers become more insistent. I especially love when opportunities arise to use an experience as a teaching moment, a life lesson. I don’t always have the answers but I do always engage in the conversations.

 Please, don’t ever ignore a question or comment about differences or struggles. Most children don’t have a filter-they just say what’s on their mind. It’s not their fault. Sometimes this is great but other times it can be awkward or hurtful.

    Be present. Be honest. Give an answer. If you don’t have one, let your child know you will find one. Do the best you can. It’s you’re chance to help shape perspective-to spread understanding and kindness. It’s the responsibility of a good parent. Celebrating differences should be easy. It should be.

    Once children start to become curious and question everything around them, it is our job to help them figure it out. Seeing the world through the eyes of your child is a privilege. We have a huge responsibility while on the parenthood journey. Our kids learn from our actions, our words, our reactions as well as our lack of action and passiveness. I can only hope all parents see their job as the most important one. I do.

    My son has had a head start when it comes to learning about #Dwarfism. We talk about it. A LOT! We all still have more to learn and we will do it together. He asks the best questions and his curiosity about his sister and her future is inspiring. He is already one of her biggest advocates and supporters and it’s only just the beginning. I have no doubt he will be educating others in the years to come.

 We have encountered one very uncomfortable incident with an older child. There was shouting and pointing and clearly very little understanding. The parent was absent, so there was space to educate. My son calmly and clearly stated, “she’s just a baby and she has dwarfism. It’s the way she’s supposed to be.” I was so proud. My son handled this situation exactly as I’d hoped. He was angry and sad for his sister but used the opportunity to help. He’s 7. If only more people in this world saw things his way.

    There will come a day when My daughter will start asking big questions about her differences. I’m already planning out in my head what I will tell her. I only hope I have all the answers and all the words to help her understand that her differences make her special-that she is exactly who she’s supposed to be and that we love ALL of her. If I’m half as lucky she will love me even with all my flaws and differences too.

I know our close friends and family will always accept my girl and all her strengths and challenges. I’m not worried about that. Ever. It’s the rest of the world that worries me. Please take every opportunity to talk about how special our differences make us. Also talk about how even though we all have differences, people can share similar strengths and interests. We are all different but we are all the same in many ways. Encourage your children to ask questions instead of staring or assuming. Model kindness, show empathy, celebrate differences-it’s what makes the world so amazing!
If you ever find yourself not sure what to say when you meet someone with dwarfism or if you are just curious, here are some helpful facts, links and resources:

    .#2, #9, and #11 really stood out to me. I hope with all my heart I never have to explain #2.

    Helpful Facts and Figures

    1. People with dwarfism are usually no taller than 4 foot 10 inches.

    2. The word “midget” is considered highly offensive.

    3. Yes, you or your children can one day have a child with a form of dwarfism.

    4. 80% of Little People are born to average sized parents.

    5. Most types of dwarfism have medical complications, some more severe than others.

    6. dwarfism occurs in all races and ethnicities.

    7. While many members of the short-statured community don’t feel that they have a #Disability, the Americans with Disabilities Act (ADA) protects the rights of people with dwarfism

    8. there is more than 200 different types of dwarfism with an estimated 30,000 people in the U.S. and 651,700 in the world.

    9. Such terms as Little People, LP, Person of short stature or Person with a form of dwarfism are allacceptable. Most people with dwarfism see the word “dwarf” as acceptable. Most people would rather be referred to by their name than by a label.
10. In the dwarfism community the word “average” is used instead of the word “normal.”
Example: “Average sized parents” rather than “normal sized parents”.

    11. dwarfism is not a reason to assume that someone is incapable. Little People can do just about anything an average sized person can, just sometimes in a different way.

    12. dwarfism is not a disease that requires a “cure.” Most people with the condition live a long prosperous life.

    13. dwarfism is not an #IntellectualDisability. A person who has dwarfism is typically of average intelligence.

    “There are over 200 diagnosed types of dwarfism. There are also some individuals with dwarfism who never receive a definitive diagnosis and/or have a condition that is unique to themselves or their family.
Most types of dwarfism are known as skeletal dysplasias, which are conditions that affect  bone growth. In other words, the bones of people with dwarfism do not grow in the same way as the average sized person.  In general, dwarfism caused by skeletal dysplasias results in what is known as disproportionate dwarfism — short stature, meaning that body proportions are different than in an average height people, more often than not with limbs that are short in comparison with the rest of the body.
Proportionate dwarfism — short-stature conditions that result in the arms, legs, trunk, and head being in the same proportion (relative size to one another) as in an average-size person — is often the result of a hormonal deficiency, and may be treated medically, resulting in an average or near average height. There are not such treatments available for people with disproportionate short stature, otherwise known as #SkeletalDysplasia.” (udprogram.com)

    The Understanding dwarfism Program site (udprogram.com) is a wonderful resource that I have found to be very helpful. It has some great activities and suggestions for helping young children to understand differences and answers many questions about dwarfism. If you have a moment and you are interested, take a look. Here is an excerpt that I found especially useful.
”Young children are usually quite curious about their surroundings. When they see something or someone that looks out of the ordinary to what they are used to, they are usually quite vocal about it. To have an answer to their curiosity is important to how they process what they see.
Give them the right answer and they usually accept it for what it is. Give them the wrong answer, and that can carry with them as they get older and form their perceptions on life. No answer offers them no guidance at all.
When a child asks about a person with a type of dwarfism, keeping it simple and not making it such a big deal will usually insure that it does not become one. Remember that kids learn from adults, especially their parents. How they act and behave usually reflects on their up bringing. Offering them an answer and understanding creates a strong foundation for who they will become.
While children are curious, It is important to mention to them that it is not polite to point or stare because it makes others feel uncomfortable and shows poor character on their part.
When a young child asks about a person with a difference, in this case a form of dwarfism, you can easily respond with:
”Everyone is different in some way. That person’s bones do not grow exactly the way that yours and mine grow. That is why they are shorter or walk that way. It is kind of like how your hair color or the color of your eyes are not the same as your friends. They are just like you and I, just different in their own way.” (udprogram.com)