Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Luke loves laptops, just like his Daddy! Kneeling is one of his milestones that we were excited to see him do on his own:)

I started this blog to get out some of my emotions dealing with the daily struggles of having a child with hypotonia. I also hoped to reach other parents out there who may be going through similar situations.

How exciting is it that my blog has gone global already?!?! I have a new “blog friend” who lives in Australia and I just received an email from another mom in Canada. I’m so happy that moms are finding my blog. I hope they are finding some inspiration, hope, information, etc. while reading it.

Thanks to everyone who stops by! I hope to discover more moms from around the world. Parenting is a global topic that connects us all, especially mommies.

I weighed Luke today. He now weighs 30 pounds! This is definitely a downside to having a toddler with hypotonia who is not yet walking. He is getting heavier and I swear I am getting weaker. I’m not sure how much longer my back, arms etc can take it. I have to use the stroller pretty much everywhere we go because I can only carry him for a few minutes before I’m ready to collapse. Once Luke catches up and is stronger and walking, I’m going to make him carry me:)

I discovered that our next door neighbors have a grandson with hypotonia. He is now in 6th grade and is “normal”. He never had a diagnosis either and I think they said he also walked late. I will have to get more details. This gives me more hope:)

Well, the nurse actually called me back later this afternoon. She didn’t even remember which test results they gave us before. I told her we were only waiting on the one chromosome test, which took her a minute to find. So, all of the tests have come back normal/negative. Yay!!!!!

Now we just continue on with the physical therapy. I guess we are one of those cases where a diagnosis/cause of the hypotonia is never found.

One of my friends who has a daughter with gross motor delays mentioned that she was going to check out something called Conductive Education. It’s another kind of therapy for kids with gross motor delays due to cerebral palsy and other neurological conditions.

I found a website about Conductive Education and there was a short video showing some of their students. It made me feel so sad and guilty at the same time. I have an otherwise healthy son, who has hypotonia with no apparent neurological cause. I feel bad for wishing he would just stand up and walk when some of these children will not only never walk, but they also have cognitive and other issues that are a lot harder to overcome.

I realized that as parents, we take our children for granted and forget that there are always others out there who may be in worse situations. I am so thankful for my son and I never want to take him for granted. I wish every parent could have that epiphany, but most do not unless they encounter a tough situation.

My heart goes out to the children with disabilities and to their parents who have to worry about their futures. I wish everyone could be helped and healed. Every child is a blessing and has a purpose for being here. Sometimes it’s hard to see through the clouds and see the sunshine, but it’s there everyday in their shining faces.

According to my mom, I was also a butt scooter like Luke. I never really crawled, but I started walking around 15 months, which is still considered late if you go by the book.

Our physical therapist mentioned one day that butt scooting is usually an indication that a person has low muscle tone. So, now I’m wondering if I maybe had it too, but not as bad as Luke. I have never been very athletic or had a lot of endurance. I managed to make it through basic training though:)

I’m just hopeful for Luke’s future. I hope that his hypotonia is something that he can overcome and eventually catch up to where he needs to be. It’s fine with me if he is never athletic, but I know this is something that would be more difficult for a boy to handle. He is already very smart, so I think he will be more studious than athletic anyway. Only time will tell us for sure.

Becoming friends with moms with “normal” kids can be challenging. I became friends with a mom who has a child around the same age as Luke about 8 months ago. We met up for playdates and even talked about getting our husbands together one weekend. It seemed like after time went on and her child’s gross motor skills progressed on schedule, but Luke’s did not, we quit hearing from her. I’ve tried to get together with them a few times lately, but it never seems to happen. I’m a paranoid person sometimes, so of course now I’m wondering “did I do something to make her not like me, or is it because Luke can’t keep up with her child?”

It’s just sad to think that someone would be that shallow. All children deserve the chance to interact with other children their age, even if they aren’t on the same developmental level. If her child didn’t seem to be on the same cognitive level as Luke, I wouldn’t use that as a reason not to let them play together!

No mom wants to admit that their child has “special needs”, but hypotonia and gross motor delays do present their own set of special issues. Making friends is just one example.

For those who have no idea what I’m blabbing on about:

Alternative Names

Decreased muscle tone; Floppy infant

Definition

Hypotonia is decreased muscle tone.

Considerations

Hypotonia is often a sign of a worrisome problem. It may be a sign of a central nervous system problem, genetic disorder, or muscle disorder.

It can affect children or adults.

Infants with hypotonia seem floppy and feel like a “rag doll” does when held. They rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent, with the head falling to the side, backward, or forward.

Infants with normal tone can be lifted with the parent’s hands placed under the armpits, while hypotonic infants tend to slip between the hands as the infant’s arms rise unresistingly upward.

Source: http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm

Every mom I know has read the What to Expect books, including myself. The pregnancy one was ok, although it did make me paranoid and worry about every little thing going wrong. The first year and toddler versions did nothing but make me worry, get angry & sad, and think I’m a horrible mother, or that my child is not “normal”. There is that dreaded word again! Any parent of a special needs child or a child with hypotonia should seriously burn these books!

I stopped reading the toddler version when my son was about 15 months old. That is around the time his pediatrician referred us to the neurologist and we self-referred to Early Intervention. Some of the behavioral issues still apply, but it’s not worth it for me to skim the book to find what I need because my eyes always drift to the “your child should be able to..” sections, then I’m upset all over again.

Maybe I should write a book for parents with kids with hypotonia??