Low Muscle tone - all over! HELP!! | Autism PDD

Wow...well said tzoya! I WISH someone had given me that advice early on.
I'm intelligent & understood delays & how the brain works...yet, kept
thinking that another week of therapy or doing this or that was going to
make my dd (miraculously) catch up. I felt so defeated. And whenever
something *new* came up, I'd get so sad. It wasn't until dd was almost 3,
when I realized she wasn't going to be done w/ intervention at age 3...and
that this was going to continue (at least for now). Wow, what a relief!!
Anyway, your advice is wonderful...I hope lots of other parents who are just
headed out on this journey read it. Rita,
Do you have a Tumblebee, gymboree, or "my gym" by you? They have classes for all stages of development. It might be worth looking into. My son went to MY GYM at that age. It was fun. It was a little hard to see how much further the other kids were than my son, but after a while, I just focused on his exercise.

I think all three have web sites.

Good luck

nakama
Hi Rita,

I know the feeling--early on it does feel like literally every day, it's
something else. See if EI will bring on a PT for some sessions. Our dd
was dx w/ hyptonia around 6 mos of age. She started PT. She's been in
& out of PT since. That has helped A LOT, not only for the actual
sessions, but mos for what the PT shows me to do at home.

Around 28 mos or so, we enrolled in a Parent & Me gymnastics class at
our local center. It was tough, I'll be honest. My dd would scream, run all
over the place, then started hitting the kids, etc. But, she did LOVE the
trampoline & most of the class...so long as no one made her do anything
& no one approached her. Which is great for a gymnastics class.
Dh & I sucked it up, he ended up taking her more than me (Sat am
class), which gave me a nice break. She is now in a class by herself...and
doing pretty good. Her PT said that class has REALLY helped her,
her strength & motor planning. Plus, she gets some sensory integration
in there too. That would be a great place to start. I love the pool idea
too.

I've heard of a lot of other kids here w/ low-tone here, so it might be
pretty common in PDD. My dd is still not as strong as her peers, has odd
postures, falls a lot, issues w/ motor planning, & is 'clumsy.' It's a mix of
her weakness & sensory processing. "The Out Of Sync Child Has Fun" is
great if you are dealing w/ SPD, and it give activities that will help low-
tone. The *GREAT* news is that this is something you can really work on
& see results. Something that early on helped me...I felt like I was
actually able to help my child in an area.

Keep getting her OT and PT. Get her as physically active as you can. Being in a pool is great because the water pressure helps the tone. Even someone who is paralyzed outside of water can often stand IN it.

You will have to learn to gird yourself for all of these bits of bad news. It's really not NEW bad news, just some of what comes along with autism and many other neurological disorders. They call it Pervasive Developmental Disorders (Autism, Pdd-Nos, Asperger's , Rett's and CDD) because the disorder of development is PERVASIVE. It means that the neurological issues caused by the autism "infect" every part of development. Differently for each child, but each child has multiple problems. If you grieve each and every time you hear of a delay, you will have a miserable life and so will your child. Get her as much intervention as you can squeeze out of the schools and/or can afford yourselves. Use your excellent knowledge of your child to help teach her. And, most of all, LOVE her. Love won't cure anything, but it will give you both a much better quality of life than if you continue to be destroyed by every piece of bad news. Believe me, there will be more.

I don't mean to be harsh, but your daughter's prognosis will be immeasurablly better if you spend your energy thinking about ways to help and in looking at the glass half full (I know you already do this, but you need to do it even more). For example, hypotonia often disappears as the brain develops more maturity. Your daughter is DELAYED, which means she exhibits issues that are common in infants but that most outgrow by this age. Many delayed kids outgrow these issues eventually, too, especially with intervention. It's just that they are delayed in outgrowing them. You are going to have to expect that you will continue to find out that your child is not developing normally. She's not. My child did not. No one's child on this board is developing normally. If they were, they would not have an ASD diagnosis or need special services. I know how it feels to keep getting bad news, but that is exacerbated if you secretly think this is all a bad dream and her development will suddenly turn "normal." Acceptance is the first step toward really be prepared to help our children become the best THEM they can be. (((HUGS)))

Sorry about the blank posts... can you tell I am new to these boards??!!

Anyway, I wanted to tell you that my DS has low muscle tone ( hypotonia) and it is the reason for his gross motor skill delays ( just started crawling at 12 mos, not close to standing up yet). His is mostly in his trunk.

But, one of the best things we have ever done to strengthen him is to take him swimming. It actually works so much of their body and they dont even know they are working! Now, my DS loves the water.. so it has been fun to take him.

I also found a local Sheraton hotel that sells pool memberships for a lot less than my local YMCA or other pools. I also wanted an indoor/outdoor pool so I could continue to take him during the winter months. This pool is small but perfect. It is open every day from 7am-10pm and there is hardly ever anyone there. I can take my DS when We have time and not have to worry that it will be too crowded. They have a locker room, shower/sauna and whirlpool if you ever get the chance to relax! It is all for about /month.

My PT said she thought it was this that helped my DS so much with his strength. Basically all I do is carry him into the water/pool and he gets so excited that he twists, wiggles and splashes so much with his arms, legs and torso... we go 3 times or more a week!

Hope this helps and good luck!
denise

My son has hypotonia, we had a great deal of improvement with hip shorts, they are basically a lycra bike short sewn up the middle of the legs. Our OT told us to get them...I'll try and think of the proper name, you can get them off the internet for about 14-22$

I was a gymnastics coach and had a few children with hypotonia, it really did help. For our son, we've been doing a lot of physical activity, soccer, ball throwing, I put some of his heavier toys in a far room and he tries to drag/lift them out.

Hiphelpers.com

beginner39311.5299652778Hi Rita,
You might want to find a Little Gym or My Gym close to you. I personally know that the My Gym in Manalapan is wonderful and friends of ours love the My Gym in Manalapan too. I used to take ds there and the people are wonderful. I wish we could go back but he has too much therapy these days.

Also try getting and exerise ball and bounce her on it while she is trying to hold her self up. My ds also has low tone since he was ill in Feb. We have been working with the ball for a while and he does great on it now. It has really improved his balance.

He is also 2 and still working on focusing.

The OT tell sme today that my daughter has low muscle tone all over.. legs and arms and torso....that is one of the reasons she hasn't developed fine motor skills, seems "floppy" at times, does not balance well (can't swing, walk on uneven surfaces etc) and is not very active...

New problems every freakin day...

any advice to strengthen muscle tone?? The OT gave me a few but anything from u parents is always a sure and effective way!

Swimming is a great activity. You could also try gymnastics. Our oldest son took gymnastics when he was young to help improve his muscle tone and coordination.

I also use to take him to the park and have him play on the jungle gym. I would have him hang from the monkey bars and climb every ladder. It was a fun work-out for him.

You could also have your daughter help with household chores, like bringing in the groceries or carrying the laundry basket.

Sooo many things - I bet Norway Mom will post a super link soon but I would just do things that she likes to do like sandbox playing , mini trampoline

She is 2 and does not follow directions!

I got a slide AT home (it sits in the hallway)... she likes the slide and does well on this one buit in the park/gymboree, I have to FORCE her to climb and almost ALWAYS needs help to climb...

Is there gymnastics for toddlers?? where can I get info? Saddyinpa, I called the Y here (I am in central jersey) and they didn't have gymnastics.. I will call for swimming..

I've heard that before about my daughter and from the school. My aunt an OT said something about swimming lessions for my daughter. I wonder ....... I'm going to have to get a hold of her for more advice for my kids.

We have 2 gymnastics gyms in our area, and they do offer classes for tots. I want to say they definately have classes for 3 year olds. I'm not certain about 2 year olds. I would let my fingers do the walking in the yellow pages and make some calls to find out.

My son's issues were mainly with his upper body. I remember doing Row-Row-Row your boat with him. You could have her push a toy shopping cart weighted down with toys, or pull a wagon. Even simply laying on her tummy and holding up her upper body on her arms while watching a favorite show on t.v. can help with upper body strength.

It was hard for me to post such straight talk, but I felt like I was giving the self I was 14 years ago some good advice. BTDT. You are a great mom and your daughter will do as well as she can. This is not all a miserable journey. It's a huge education -- for both you and your daughter. Thanks for posting about my post. It made me happy.

THANK you SOOO much u guys for all the advice, tips and encouragement...

Tzoya, U r so right - uggh - I WANT this to be a bad dream that will suddenly end one day and I know till I acccept this dx COMPLETELY I will continue to mope and not help anyone (,uch less my daughter).. I needed that reminder from u.... ok so today, I am going to look into

1. swimming classes

2. my Gym (Nakama, paws1129 - hmm, I thought it was just another McDonalds type of play area.. Manalapan is not too far from here.. will defi look that up_

3. Hiphelpers - getting on that next

4.Weight bearing - bouncing ball, trampoline

5. Walking on uneven surfaces (I thought of laying pillows ont he ground/air mattress and making her walk on it..)

I am going to post this as a link fo "things to do" when someone searhes for "low muscle tone"...

THANKYOU!!!!!!!!!!!!!!!!

OMG, I have finally found someone else who's child has the same problem as Sharlet, her motor skills are extremely delayed and she has hyper mobility and extremely poor muscle tone over her whole body, I thought she was the ONLY autistic child like this and it has had me stumped. I am going to read every post in this topic when I have time. Sharlet is getting no physio at the moment :( Rita,
I was just wondering how you made out today? If you were able to find anything out and if you were feeling any better about all of this.

Rita,

You got tons of great advice:) I took Sarah to gymboree classes and explained to them that she probably wont follow the structure too well but we tried:) They were very understanding and let us do whatever we wanted to...they had really soft foam equipment to climb up and down on..balls and colorful mats, slides..ect..they play songs, blow bubbles...have a giant parachute to wave in the air while the little ones are under it..Sarah loved it...never noticed the other kids at all but she had fun:) Good luck!