Since my twins, L & J, were 15 months old they have been receiving both speech and occupational therapy. So for 1.5 years we had therapists coming to our home to work with them. Then in September 2010 they started attending our town's preschool program. The program is a mixture of peer model students and special needs students and they qualified based on their developmental delays. I am amazed at the progress they have made these passed 5 months. While they certainly progressed with home therapy, albeit slowly, being in an environment with their peers 4 days a week has done wonders. Combine that with the great teachers and therapy they are receiving weekly there, its been quite a transformation. L is talking in full sentences now and J, though still slightly behind him, is starting to put phrases together. We are thrilled.
At our parent-teacher conferences in November I brought up some concerns I had about J and asked for a physical therapy evaluation. My concern was and is that at 3.5 years old he still cannot jump. At all. He also has balance issues and it appeared to me that he lacked some leg strength. They decided that they would have both boys evaluated in December and January and then we would have meeting n January to discuss the findings and revise the IEP if necessary. Thanks to the gazillion snow storms and school cancellations we were hit with, we wound up having to cancel the meeting 3 times. Finally we decided that the teachers and therapist would have it without me and then they would mail me the revised IEPs. I was totally fine with this since I was the one who requested the evluations.
So a few days after they have the meeting I receive the evaluations and new IEPs in the mail. I knew that at least J would qualify but L qualified too. And while I obviously knew that J had some issues in this area, I was not prepared to read those finding in black and white. The evaluation shows that he has low muscle tone, particularly in his legs and trunk. OK, I anticipated something like this. But it was the numbers that threw me. He scored extremely low on everything and in the end is in the 7th percentile. So 93% of children his age are ahead of where he is. Way ahead. That hit me hard. I cried for days wondering what I did wrong and thinking that I somehow failed him. That I am a crappy mother.
So now I am on a mission to help him strengthen his muscles and body to get him where he needs to be. I want him to be able to run and jump with his brothers and other children. To be active and healthy and able to play sports some day if he chooses to. My problem is I don't really know what to do. I have been working with him on the stairs these past few weeks and I definitely see improvement. Instead of using his hands on the stairs for support I have him walk up straight and make him use his legs.It is hard for him, but I can see each time he is improving slightly. And that at east gives me something to hold on to.
Now I am in research mode and trying to find information and exercises I can do with him. If you have experience with low muscle tone in a child, I'd love to hear from you. How did you work through it and help your child improve? Are there any good online resources out there that I may have missed?
You didn't do anything wrong. Hugs! Have you had him checked out by a neurologist? My son has a chromosomal syndrome and he has ataxia, hyptonia and other issues. He is almost four and can't jump but with lots of PT, he is trying really hard. He learned to walk at almost three. He has had made HUGE strides with private PT and he is doing super well with PPCD (preschool that is similar to what your sons go to). PT, OT and Speech can do wonders. A neurologist (or ask your doctor if he/she thinks he needs any other workup) can determine if there is underlying issues.
ReplyDeleteI have twins and a younger son as well all with low tone. You can be born with low tone and ok others are affected by it. In the case of my boys all three have been affected differently. One of my boys (age 5) has apraxia so his tone affects his speech and some fine motor skills. He has problems in handwriting. His twin brother has apraxia and we believe something else going on. I think he has a genetic syndrome and Asperger's. He had speech issues whenhe was younger with prounciation and intelligibility. He was very hard to understand but through speech he is able to be understood. His issues now are with grammar. He has balance and coordination issues as well as stamina. His fine motor is also a bit delayed. Our youngest has a genetic syndrome, autism, apraxia, and intellectual disabilities. Low tone will never go away. You can strengthen your muscles but the tone will never go away. We were told that gymnasts have low tone. YOU did nothing wrong! Believe me, I've cried after hearing all that was not typical with my boys as well.
ReplyDelete@Shannon and @Missy
ReplyDeleteThank you so much for sharing your experiences with me. I sometimes feel so alone with this and its nice to have people who understand and have been there to discuss it with. And I never thought about how low muscle tone can affect speech. I wonder if that played a part for him.
@Shannon
At 15 months old J was referred to a neurologist. At their 15 month checkup I had answered an autism checklist (I cannot remember the name)and because I had more than 3 answers that were "positive" he was sent to a neurologist for evaluation. The neurologist however did not feel there were any neurological issues.
knowing you and the mom you are and the steps you take to care for those boys I'm not worried. He's going to be a strong and healthy kid just like his friends and brothers.
ReplyDeleteThank you Melinda.
ReplyDeleteLow tone is something you are born with. It has nothing to do with what you do as a parent or what you did as a pregnant Mom. It's like having brown hair or blonde. It's just something about you. FOr all you know, maybe you even have it. I don't think it's something that will majorly affect his future. Our PT said that it means that he'll just have to work harder. You can actually physically feel the difference between AJ & G. AJ feels lighter and floppier.
ReplyDeleteLow tone has affect AJ's ability to use a sippy. He's finally getting the hang of it now, but it took practice and exercise to get his mouth used to the motion. Even his mouth muscles have low tone.
I also heard that gymnasts have lower tone - it is what enables them to be flexible. Also, people of Asian descent have lower tone in general, whereas African descent have higher tone.
Someone mentioned a trampoline could be helpful for J's leg strength. (not one the the big scary break your neck ones) a small one with a bar. I can picture all of your guys trying to kill each other to get a turn, lol. Maybe ask the school PT what they thing about that. : )
XO
Tracey
I don't have any advice, but I do know that you are NOT a crappy mother! Just the fact that you're getting their check ups, having them in therapy AND working with them at home. You're awesome!
ReplyDelete*Raises hand* We've been dealing with low muscle tone for almost 5 years now. DS will be 6 in May, and since he was 12 months old he's been in therapy for global development delays.
ReplyDeleteWill he be working with a physical therapist? If so, don't be afraid to ask questions! They will show you things you can do at home, and what to encourage.
With jumping (since this is something we are currently working on), pretending to be a frog (squatting down and then jumping up and forward, feel free to ribbit!) has been FUN and helpful. That's exactly what we want for DS - for therapy to be fun, but also be work. We also bought a mini trampoline (they have them with handle bars and without) and let him bounce when he wants. Go ahead mom, get on there and bounce. You will FEEL it in your thighs and calves, so you know it has to be doing something for him.
If I get a few minutes this week, I'll type up some more fun things that we do to work DS's muscles!
@Mandi
ReplyDeleteThank you for the tips! I wonder if I can find a second-hand trampoline somewhere? I will definitely look into it! They are both working with a physical therapist once a week at school. I plan on shooting her an email today to ask her for suggestions on what I can do with him at home.
I guess a part of me is also disappointed in myself, and Birth to 3 services quite frankly, for not picking up on this sooner. he's almost 4 and just now starting physical therapy. I have to wonder how much better he would be right now if we had noticed it at 15 months.
My special needs son (he doesn't talk) has low muscle tone in his hands I was told - he isn't strong enough for scissors. Strange, I would have never thought that but now we are constantly looking for toys to build with and manipulate with his hands.
ReplyDeletesorry I can't offer any advice, tips or resources. but I can offer a big hug and tell you I understand how you feel. finding out our kids qualify for assistance is bittersweet. even if we knew in our heart of hearts they needed help, seeing or hearing it confirmed is still hard. no mom wants her child to have to struggle and even though you know they are getting help, it still means another thing they will have to work hard for. just remember that every child has a special gift and try to remind yourself of at least one thing you know he is better at then 93% of kids!!! :)
ReplyDeleteMy two youngest kids have genetic hypotonia (low tone). My daughter didn't learn to jump until she was 5, and she is nearly 7 and still can't do several hops on one foot, but she has made progress. Her tone was very low, much more severe than my son. He is very determined though, and she was more willing to let people do things for her. I have lots of suggestions I can make on momdot so I don't have a mile long list here, lol.
ReplyDeleteMy daughter was diagnosed with low tone. I her case it is more the joints than the muscles though. She couldn't jump with 2 feet until 3 1/2, then all of a sudden she was jumping on my bed like a crazy girl. Shortly after being able to jump on a trampoline or bed, she was able to jump on the floor.
ReplyDeleteOnce he gets it...watch out :)
I have no experience with this! But I know you are on the case and he will receive the best possible everything because you are his champion!! With your help he'll master it. :)
ReplyDeleteNever beat yourself up as a Mom. You are doing the things you need to do for your kids, I hope that it all turns around for you. Thinking about you!
ReplyDeleteThis doesn't stem from you as a mom. Please don't get down on yourself like that. Already you've been working with him and you're seeing progress!!
ReplyDeletehello- i saw the title and just wanted to comment about my son who the doctor thought had low muscle tone. well you should also have vitamin levels checked as well because the problem with me son was vitamin d deficient and he had a seizure because of it. so have that checked as well if you havvent done so already. he was then diagnosed with rickets- he is better now- Praise be to God
ReplyDeleteI used to work at a school for special needs and one of the things they did for kids with those issues is swimming to help the muscle tone improve.
ReplyDeleteI know what you are going threw my daughter had to go to phyiscal therpary for 4 years she is now 5 and is doing great but now my other girl who just turned one has low muscel as well and has started therapy to.
ReplyDeleteWe also have low muscle tone and gross motor delays because of it. Doing PT, but I also wonder if there is a special massage which is helping the low muscle tone. We will see neurologist one month later for first time.
ReplyDeleteMy grandson was diagnosed with Autism at 23 months, he has been seeing a physical therapist since he was 15 months because he was not walking yet. We have a trampoline that he has been jumping on since before he was diagnosed and this summer we got a pool, he has been playing in it since May. We thought that all of this would help his balance but he is almost 3 now and even though he walks extremely well he still has balance issues. It doesn't take much to knock him over or for him to trip and fall. He can pull himself up from a sitting position but you can tell it takes effort for him to do so. We have been looking into a blood test to check if his carnitine levels are low, has anybody else heard anything about this and if so,did it help?
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