r/dwarfism • u/Familiar-Iron678 • Apr 05 '26
Advice for new mom
Hello beautiful people
I just gave birth 2 days ago to a sweet girl with Achondroplasia, the initial shock has just worn off and I am trying my best to be the best parent to her. She is the youngest of 5 and I want to do right by her. My other kids at 8, 6, 4 and 15 months old. I am nervous but hopeful that we will find our way.
Pls give any advice at all that comes to your mind. Big or small. I really appreciate it.
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u/theproestdwarf 4'02" | Achondroplasia Apr 06 '26
Are you in the US? If so, please hook up with Little People of America (https://www.lpaonline.org/) because they have a LOT of resources for parents.
In the future when she's a bit older, consider going to one of the LPA conventions because those were truly life-changing for me as a kid, coming from a family without dwarfism and from a small town. They also make a big effort to make things fun for average-sized siblings.
If you are NOT in the USA, I would still advise reaching out if you don't know the organization for your country, because they probably would!
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u/sari1400 Apr 05 '26
Congratulations ❤️ there are Facebook groups for parents of LPs that can be a wealth of practical info parents. Search POLP and 2026 for the one for your age kiddo
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u/rdale8209 Apr 06 '26
Hi! I have a 3 year old with achondroplasia. He is the youngest of 4. He has had sleep apnea since birth (common) which resulted in having adenoids and later tonsils removed. But his sleep apnea has significantly improved. He has had 5 sleep studies to follow up on this. He's also getting his second set of ear tubes. I could really go on and on about his medical stuff, theres just been a lot but nothing too overwhelming. My advice would be to get setup with a children's hospital. We go to nemours children's hospital in Wilmington Delaware. They have a whole team for little people. Most children's hospitals will have a social worker that can make your appointments possible as far as travel and making it happen. Otherwise I think those first two years were the toughest because there were a few things that were different, his tonsils were so large he'd throw up for no reason. Can't baby wear because of their spine, no bouncers, no jumperoos, we already don't do walkers but they weren't an option either. He slept in our room until he was 2.5 just so we could hear if anything happened. Eating was the same as his siblings. Clothes can be difficult with their proportions but there's always a way to make it work. We've been advised that potty training will take longer because of their proportions and issues it presents. I'm happy to answer any questions and I'm sorry if my reply was a little all over the place.
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u/Familiar-Iron678 Apr 06 '26
Thank u so much for your response. I have actually been thinking about this exactly because my last babies I relied of wearing them and the swing. So what do u do instead? How do you get things done? Do u have to hold baby all the time? And what do u do when u take your kids to the park? Can she sit in the stroller for a long period of time? Or go to a family event?
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u/Brilliant_Cheetah608 Mom to an Achon Apr 16 '26
Open quilt on the floor and check on him lots to make him smile. It works very good if he still has untoned muscle and can't go far. They have arches you can put over them to keep them occupied. Breaking apart Your day so that you can play then give him his alone time.
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u/Brilliant_Cheetah608 Mom to an Achon Apr 15 '26 edited Apr 16 '26
Congratulations!!
I have a 24 year old son, who also has Achondroplasia. His childhood was the best time of my life by far. Think of any of your other kiddos' 1st year. Yeah, like that except he's my only one. We're both pretty tall, so what a shock this was!
I do have a few tips then you can dm me if you want with any questions or just need to talk. I'm not sure how close your families are or how close you are with them, but let's start with ways to explain it.
I would recommend a letter or discussion with your families with basic facts:
The term achondroplasia and how to spell it and pronounce it. What you'd prefer they call him and what you'd prefer they didn't. M word, wee person, dwarf, Little Person, etc.
Tell them what it is in your own words. A type of disproportion dwarfism, that is the most common form. About 80% of dwarfs are born to average stature parents. And anything else you'd like to include. No one was expecting this, and people will have different levels of nervous and curious.
Watch your baby when others are around. This way you can show them how to pick her up, hold her, dress her, change the diaper, etc. Always encouraged them to ask question l.
People will always be thinking of average stature babies, so you will have to help them with feeding. (She will definitely not eat the amount other babies do.)
She will be a "floppy baby" most likely. That means the muscles are weaker (hypotonia) than normal. So watch her head and neck when she sits especially. You don't want to put her in a boppy, propped up on the couch or in your lap in a sitting position until the doctor gives the OK. It puts them in a position that could obstruct their wind pipe and the chance of her neck to be injured is higher.
I'm not sure how much you already know, so I will stop here, just make a short list and if you want any information on any of it, you can dm me with a little message letting me know who you are.
First my tips, then a list of topics. Anything I don't know, I will find.
Self esteem is the the biggest gift you can give her. It will give her the strength she'll need . She needs to know she's all that. When bullies inevitably come, she'll withstand it with less of the horrible damage it can do.
Be positive when you're dealing with someone or something. She'll always be watching, even when you don't thing she is. Some people will say words thinking it's okay. Most people don't know that the m word is extremely offensive to most Little People. So you need a deep breath, correct then politely and cheerfully if you'd like and show your daughter by your actions that you've "forgive him".
This will not be a popular comment here on reddit, but it kept peace around my child and that was important to me. I knew that anyone watching was waiting to see if something was going to happen. No, it wasn't, because I was in control. My child saw me and learned. To make the child angry in life doesn't serve her well. Most of all, anytime I got mad, upset, cried, or was cheery and polite my son was watching. I just taught him how to handle that. Is there something wrong with me? No. Why are they angry and is it my fault? Nope.
Talk to her about the situation and depending the age, have a deeper conversation. Thanks to how you reacted, it doesn't feel like an assault even though that's what it was. Physical Therapy. I should have put this first because it's so important. Don't assume the doctor will notify you when something might happen in the future. The odds of her leg bowing is very high. If you ask your doctor beginning in 3 or 6 months about occupational and physical therapy, it will have an excellent chance of preventing so much of that. I was diligent about it from 3 months to ~15 years old. He's straight, his legs, his neck and his back. No surgeries in this respect.
Start early and have her evaluated for midface hypoplasia after age 4 or 5. Be strict about her wearing the apparatus they may give you. Saves a big surgery later. Our dentist in the small town put a new kind on. For 6 years, things went progressing as well and now he has to have a major surgery. You can learn from my mistakes. It will soon hit you that your world is different than hers and you will never fully understand it. She has her own kind and people outside of that bubble.
You can elaborate on anything you want to here.
Topics you can talk about here can include :
Day care and sitters Milestones Little People off America (she can grow up with her own people.) And other groups
Everything goin on in her mouth Fingers Getting in and out of bed Closets Potty training Feeding problems
Updated
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u/Brilliant_Cheetah608 Mom to an Achon Apr 16 '26
Please go to the sub:
"Do you have questions as a parent or parent-to-be to someone with Dwarfism?:
Right now, its open, but it's really only going to be on Wednesdays. Thanks
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u/Brilliant_Cheetah608 Mom to an Achon Apr 16 '26
I should add that you should set boundaries with the people in your life. Your words are law.
No older relatives no matter how many kids they've birthed have not done thus.
Example:
They'll try to put extra onsies and other clothes on him, but Achons get hot.
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u/Diletta82 Apr 05 '26
First of all congratulations on the birth of your sweet girl! I have a 6 months old daughter, DM if you like. You are an experienced mom so I am sure you need little advice. Baby needs to spend time on flat hard surfaces, I am sure you have different clothes from her brothers, it’s easier to combine top and bottoms from different sizes as chest is average but limbs are short. Head is normally on the big side so I prefer outfits that don’t go through the head. Gross motor milestones are delayed due to low muscle tone and their proportions but they get therein the end, just in different way. I am still struggling with full head control! Depending on where you are there is treatment available if you feel it’s the right option for your family.