My hypotonia timeline:

Sorry everyone, I'm having a hard time posting the big long thing I wrote. Give me a little while and I will see what I can do. It may be too long to fit into one reply.

My hypotonia timeline:

My hypotonia timeline:

Younger than 1 Year:
- Parents begun to notice the peculiar way I slept (with limbs flopped out instead of curled in towards my body).
- Parents also noticed an inability to hold my head up.

17 mos.:
- Finally begun to walk on my own.

6 Yrs.:
- Begun to write more frequently in school; parents and teachers noted a very peculiar pencil grip and my inability to hold my head up for a long period of time.

7 Yrs.:
- Teacher began to criticize my poor posture in my desk, forced me to sit up straight.
- Constant discomfort of sitting up straight resulted in some fidgeting. Teacher mistook fidgeting for ADD and pushed me into a remedial class and forced me into psychiatric evaluation. Through this ordeal it was discovered that I had hypotonia.
- This year, I begun regular physeotherapy sessions with a lovely woman named Wendy.

8 Yrs.:
- Continued my physeotherapy sessions with Wendy. The sessions were not particularly challenging or strenuous but my parents saw excellent results, particularly in my abdomen and back.
- Parents put me in hockey, partly to satisfy my incessant whining to become more like my big brother, and partly with hope that it would further develop my leg muscles.
- Eventually stopped physotherapy due to abuse and ridicule at the hands of my teacher, who encouraged classmates to make fun of my disorder, which she did not consider legitimate or real.
- Was given an aid for the Grade 3 Provincial Standardized test and allowed extra time, however I did not need much extra time; scored far beyond the range of most third-graders in my schoolboard.

9 Yrs.:
- Steadily improved at hockey.
- Begun to learn writing in cursive; peculiar pencil grip had been corrected but handwriting was still very shaky and messy.

11 Yrs.:
- In an effort to improve my grace and hope that I would become less clumsy, parents enrolled me in jazz dance classes.
- Continued to play hockey.

12 Yrs.:
- Continued with my dance classes and hockey.
- Eyes began to weaken as I needed to heavily squint to see the blackboard. Heavy squinting caused tension headaches. When I stopped squinting, the headaches stopped but my vision was incredibly weak. I Was finally tested after two months in school and was prescribed my first pair of glasses.
- Handwriting was still awful and was often chastised by my teacher for it. Also, many school-related strains such as carrying a heavy backpack tired me out far faster than my classmates. My hockey equipment also started to become very heavy for me and I often needed several days of rest after intense practices and games.
- Started playing brass instruments, but would tire out quite easily from the strain of blowing in the mouthpieces.

14 Yrs.:
- Begun competing in dance and taking a variety of disciplines (Jazz, ballet, tap, acrobatics, hip-hop, contemporary).
- Earned a spot as the only ninth-grader on my school's women's hockey team. Was now used to the strain of heavy equipment. The strain never went away at all, however, I became better at conditioning my body.
- Was now on my third prescription of glasses.
- As I grew physically I became susseptible to occasional dizzy spells and fainting.
- Smoked marijuana for the first time, and became even more physically lethargic than your average "stoned" person.

15 Yrs.:
- Begun working in fast-food. Co-workers and supervisors often chastised me for an inability to carry as many items, hold certain things steadily, and complete tasts which required fine motor skills as quickly.
- Dizzy spells and fainting persisted.

16 Yrs.:
- After 8 years had to give up hockey in order to further pursue competitive dance.
- Competition judges noticed an apparent lack of strength in my extensions and a weaker centre of gravity than most girls my age.
- Was now on 5th prescription of glasses. My optometrist theorized that my progressively weakening eyes were as a result of my hypotonia - the muscles in my eyes did not get stronger as I grewp physically.
- Drank alcohol for the first time. Did not become lethargic but lost control of my physical abilities (i.e. accuracy, ability to walk in a straight line) far faster than my peers.

17 Yrs.:
- After fainting in biology class as a result of a pin prick, my biology teacher and I begun to research hypotonia more thoroughly. I read that hypotonic people's veins do not instinctually constrict like most people's do in certain situations (i.e. when someone's blood is taken, when they are physically exerting themselves to a high degree). This explained my dizzy spells and frequent fainting.
- Around this time I learned that there is a possibility that I could not have contractions and go into labour properly when pregnant.

Today:
I am twenty years old (will be twenty-one in a few weeks), attending university, and enjoying my life. I do not consider myself flawed in any way, I am simply different. I am very open about my hypotonia. I participate in the following activities which are undoubtedly affected by my condition:
- Dancing for 10+ hours a week - Hypotonia has given me a large range of motion and thus I am quite flexible, though I still have trouble holding positions, i.e. extensions, for as long as my fellow dancers. The cardio energy that it takes to dance for several hours at a time is often quite demanding, which is why I always try to keep adequately hydrated and eat a lot before or during these active hours.
- Working out at the gym 5+ hours a week - I am not able to lift very much weight, and for the most part I have almost never been able to increase the amount of weight I lift on certain machines. However, I concentrate on quality, not quantity - the gym teaches me how to isolate my muscles, something people with hypotonia have a hard time doing. Again, as with dance, I try very hard to keep adequately hydrated (and full of food!) during these times.
- Writing long exams - During classes, I take my notes on a laptop. However, I write my exams by hand. As an English major I am required to complete a lot of writing at once. The longest I have ever had to do this was approximately three hours of straight essay writing. Towards the end of the exams, my writing is significantly less legible, though it is still passable. I sometimes have to take small breaks to rest or stretch my wrist and knuckles, but conditioning over the years has allowed me to last slightly longer every year. I have had the opportunity for extra time to write my exams, but have never had to use the extra time.
- Habitual marijuana smoking - I smoke marijuana on a varying level, usually several times a week (please do not preach to me about this as I have my mind made up; my marijuana usage is a personal decision and I allow others to have their own opinions, thus I expect the same amount of respect). I am a self-professed "lightweight" and usually only smoke about half as much as my friends do and get just as "stoned" or hold the high in for longer. My fine motor skills and accuracy is fairly poor, and I have yet to determine if this is solely the marijuana, or if it is a combination of marijuana and hypotonia. My brain activity, however, and mental ability is still exemplary while "high." However, the low blood pressure does make my body very disconnected.

Thank you Bree for your testimonial. As a mom of an 11 month old with Hypotonia your words as someone who went thru it carry so much weight! You are a very resilient and brave person. You have been thru alot yet have come out a stronger person. Children can be so cruel and as a Mom its something you want to protect your children from, but as we know all we can do is prepare our children so they can defend themselves and be as independent and self reliant as possible. You are an inspiration! (Except for the smoking pot bit) ; )

were you ever given a diagnosis for your hypotonia? what was causing it? our 27 month old son has hypotonia but we cannot figure out the underlying cause as of yet. He still cannot walk, and only speaks a few words. He pulls himself up on furniture and cruises, but to walking. We have done early intervention and every test out there with no official reason as to why he has these problems. Our next round of testing is going to look for metabolic reasons via more bloodword and a spinal tap. Scary, but this is what the neurologist reccomends and we want to find an answer to see if there is anything else that we can do to help him.

That is great to hear about how you done lots of thing even though you have hypotonia. Well my son is now 4 years old he learned to walk at about 21 months, he now wheres leg braces and also has glasses. He was always falling and he face plants every time. Well the leg braces have realy helped, he got the glasses about 6 months ago but has needed them since he is 3. Well have a few questions for you? Has your mucle strenght gotten better with age or do you feel that is is the same as when you where a kid? Also did you always have eye sight problems or did it just come out of nowear? How did you explain what you had to other kids or how did your parents tell you? Eddie starts school in September he is the only kid in his school that i now of with AFO's leg braces and also the only one i saw with glasses, in hes grade, Kids ask but it is hard to explain and of corse parents stair at him like is is not normal. He also has Autism, is verbal and extimely smart. Well hope to her from you

Wow, I'm so sorry I wasn't able to tend to this topic. Things have been a little crazy because I'm in summer courses and working full-time. I'll try to answer a few questions. If I missed them, sorry, just ask again and I'll get right to it!

In terms of explaining it to other kids, it has been very difficult. I've gotten better at it over the years. The best way I've broken it down is emphasizing that "hypo" means "little to no" and "tone" is what holds your muscles together. My muscles have no tone, therefore don't hold together. I usually just explain that my muscles are very "soft" and that things like standing up straight or holding my legs a certain way take a lot of concentration and are more tiring for me than for the average individual.

It's interesting, Alexandra, that your son has autism, because I've read that hypotonia often appears in children with autism, cerebral palsy, and a few others which I forget (epilepsy, perhaps)? I definitely believe that hypotonia has caused my eye problems. My eyes have evened out in the past year - my most recent appointment in May was the first time in almost ten years that I have not had to get a new pair of glasses. I am actually to the point of legal blindness in my left eye. However, fret not - that might not necessarily happen. My nearsightedness is a big problem, and as my optometrist said, that comes from weak eye muscles. The bigger problem is my astigmatism, which is actually completely unrelated from hypotonia. I got it from my Daddy... whose eyes are also pretty bad.

I agree that kids can be so cruel, but it's not just kids, it's adults. I actually can't say that I was "diagnosed" with hypotonia, because as Wendy explained, it's a syndrome, and one cannot formally diagnose a syndrome. However, I do have papers (I keep them in my living room because of the memories, hah) of my assessment with a therapist. So I guess one could call it an "assessment," but not a formal "diagnosis." Because of the lack of diagnosis, it's very difficult for me to be taken seriously. My older cousin, who is a naturopathic doctor, believes that I do not have hypotonia because she read one measly textbook article on it which led her to believe that people with hypotonia all act the same way, and thus I must be "faking" my disorder. My own brother denies that I have it, but I wouldn't take his accusations too seriously - he has no knowledge of biology or anatomy, and can just be a little silly sometimes. The biggest supports have been my mother, my sister, my ballet teacher, and my boyfriend, who had no idea what hypotonia was when he met me six months ago, but considers it legitimate and always helps me out. You know what's sad? My spell-checker underlines it because it doesn't recognize the word!!

It's hard to say if my muscle strength has improved over time. I think hypotonia has impaired me less in the way of strength and more just... made my movements very awkward. I've had to learn to control and adjust to things. For example, I used to walk very pigeon-toed, and not even notice. It had to be pointed out to me. I had to actively and meticulously remember to turn my feet out (starting to take dance lessons helped as well) as I walked, and the strain lasted for over a year before it finally became second nature. I also used to do weighted bicep curls in a really strange way - my arms would turn in a bit. My don (I think they're also called RAs - residence adviser) in my first year of university, who was also a personal trainer, noticed and tried to get me to correct it. It had to become a mental instinct before it became a physical instinct. I still can't lift more than ten points in a bicep curl, but I lift it correctly now.
I had to ask my mom about walking. She said that it didn't take me so long to learn to walk as it did for me to find the strength/motivation to pull myself up. She said I used to squirm for a bit and get tired, or rock for a bit and get tired, and I was almost never able to pull my own weight up. Once I got up, I was fine to start taking steps.
By the way, Alexandra, no matter who stares at your son, he is and always will be "normal!" Just a different kind of normal. Everyone will get stared at for one reason or another - because they're very beautiful or because they wear a bright-coloured shirt or walk with a cane or (in my case) have tattoos. But he can go through life being a totally normal kid (autism and all - my brother as aspergers, which I know is not entirely the same, but still, and he graduated from university a month ago).
The best thing I can say for people with hypotonia, at least milder cases, is that body awareness doesn't come naturally to us. My mom will sometimes say something like, "You're holding your fork weirdly." "Oh, I didn't notice." "Doesn't it feel weird?" ".... No?" The best thing I've ever done to increase body awareness was to take ballet, and also to take yoga. You learn so much about isolating parts of your body, and working to form a certain shape. You get to know your body way better, so I'd recommend when any of your kids are old enough to try a yoga class. Until then, stretch every day - it worked for me!

Thank you so much you have answer all my questions ans more. I don't worry to much about the stairs, as for people looking at you for tatoos they are beutifull art my husband and I both have them. Thank you again. I will keep your advise in mind.

Thanks, I love tattoos too! I just thought of another exercise that my don got me into (just for one semester during my first year because it was too pricey for my starving student lifestyle): martial arts. Not all little boys want to do yoga or ballet (quite understandably) but martial arts REALLY helps with body control. With your sons conditions I'm not sure if he would be able to participate in intense classes but there might be resources for students with special needs. It depends how close you are to a metropolitan area. My friend Erin and I recently started teaching dance classes for differently-abled adults, one of whom has autism, but I'd never heard of such resources when living in smaller towns (in fact, Wendy used to drive two hours to my town to do my sessions). Still, if you are able to look into it, martial arts when your son is a bit older would be a great way for him to develop body strength and awareness!

Thank you again I actualy had thought of that in the past just did not no if it was good for him.

You can see the story of my 36 year old daughter's struggle with Benign Congenital Hypotonia under Lisa's story. In NO WAY would I tolerate pot use which would actually harm her. She had an alcoholic drink twice and would never do it again!!

Thank you so much for posting your timeline. My son in similar in some ways. He has a high verbal IQ and loves to write but he can't write for long before his handwriting is affected. He is homeschooled but took a writing composition class and made an A+ on his first assignment. He could never write fast enough to keep up with his thoughts until he started typing. He can type 50 wpm. His hypotonia never affected his mouth. He often gets parts that require fast talking in his theater group because he is very good at this. He is also very good with foreign accents and doing imitations of other people. He has a really good sense of humor and can do improv imitations that are hilarious.

His hypotonia mostly affects his core muscles, hand muscles, the muscles in the arches in his feet and his endurance.

When we try to explain his mild muscle weakness to other people they act like they don't believe us because they have seen him dance and act and play the piano. It bothers me that they think we are lying about this. They tell us if he has muscle weakness problems he just needs to exercise more. He exercises a lot more than I do because of the dancing and my feet don't hurt, I don't have the endurance issues and I am a lot older than he is. My son is sensitive to this. He is not lazy like some people think. In the football obsessed community we live in, verbal abuse of children by adults when they participate in sports is accepted. When boys are in pain they are told to suck it up and stop being a wuss.

My son is very smart and loves to read but boys his age only want to talk about sports and things he is not very interested in. He does not fit in. We keep telling him that he will find more people like him when he gets to college. I hope this is true.

His three hour musical theater rehearsals wear him out. He was diagnosed last year with developmental coordination disorder but I always noticed that he is not clumsy at all until he gets tired, which happens faster for him than other kids. He recently made it through a rehearsal and two performances in 6 hours. One of the performances was at a state fair and he had to walk a quarter mile to get to the stage. He was so exhausted afterward that after the last performance, he could not walk around and enjoy the fair. The muscles in the arches of his feet collapse and cause pain. He wears orthotics in his shoes but they don't seem to help much with the pain.

Nine months ago, we found out that he had scoliosis. He now has to wear a painful Boston brace for at least 12 hours a day. It limits his mobility and makes it impossible for him to bend over and pick something up off the floor. It is very tight and makes it more difficult for him to breathe. He is supposed to wear it during any kind of weight bearing activity but I let him take it off to dance so that he can strengthen his core muscles which I read can become weaker in a brace. We also bought a weight machine for him to use at home.

His migraines have become more frequent in the last year and dealing with all the pain combined with the hypotonia are making it harder for him to concentrate. We are trying to find out the cause of his hypotonia. He will have his first MRI and a nerve conduction test soon.

I have a few questions, and would be extremely grateful if you can answer them, despite the fact that this was posted well over two years ago.

I can see from your timeline that you were pretty good at hockey, so if children diagnosed with hypotonia grow up with every day training, is it possible for them to be able to say, run as fast as the other kids? And also, once you develop your muscles, does the flexibility go away or does it stay? As for the weight problem in gyms, I'm going to guess that you can still develop your muscles, just not your muscular strength, right? As a person living with hypotonia, do you think that someone can grow up to become a fast runner, or a good athlete if they work hard enough?

Thanks for taking the time to read this, and I hope to hear from you soon.

Hi. I am 17 years old and I was diagnosed with Hypotonia when I was around 1 years old. I don't hear from other teenagers or young adults who only have hypotonia so i joined this group to try and find that..

My timeline? I was a delayed baby in my of my gross and fine motor skills. I did physical and speech therapy for a good while when I was young. At the age of 8 I was diagnosed with scoliosis. I have stopped going to speech therapy but I am still in and out of physical therapy and probably will for the rest of my life. Starting around the age of 11 or 12, I started dislocating my left shoulder chronically. I am going to have surgery in a couple of weeks for it. I hold pencils/pens incorrectly too which causes my hand to cramp up and hurt quickly. I am very clumsy and have loose grips. I am also somewhat hyper flexible.

Even though my hypotonia is a milder form, It's still really hard for me to do sports and causes me to have low stamina.

I absolutely hate this condition and wish it would go away even though it's mild T_T I live a normal life for the most part but this condition is hard to battle.

Yep. That's my story :\