Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

I am a firm believer that everything happens for a reason and we are in the place in our lives where we are meant to be at any given moment. I believe that Luke was given to me to teach me many things such as patience, strength, unconditional love, and tolerance. All of these are good things to be taught!

With all of the mixed emotions that I have been feeling over the past 2 years with Luke, I feel a calling of sorts. Luke’s issues aren’t really that bad, but we have still been through a lot trying to get things figured out. I have had many days of frustration, depression, anxiety, stress, anger at times, exhaustion, “why me”, etc…. I can only think that if I feel all of these things with Luke basically being a healthy, normal 2 year old, I can’t imagine how other parents with more challenging experiences feel on a daily basis!

I started looking around online for support groups in our community for parents of children with special needs. I couldn’t find anything within a 100 mile radius!! Of course, there are some groups available through some of the state programs and some other groups specific to children w/ Autism, but nothing for parents who just want to get together and share their experiences. All children with special needs are different and will have different outcomes, but as parents, we all go through similar emotions. I think it’s healthy to share these feelings with people who know what it’s like. It has been so hard for me to explain over and over, and over again to family about what is going on. They will never get it!! I get the feeling that some of them actually think it’s “in our heads”. I just don’t even talk about it anymore with them because I get so angry and I don’t want to be angry! I decided to start a local support group to reach out to other frustrated parents. Parents with children of any age and any type of need can join. Currently, I have 3 members including myself:-) I have begun to put the word out to other people I have met with children with needs and I also mentioned it today at physical therapy.

I sort of feel like maybe I have bitten off more than I can chew, even though we don’t have many members yet. I have never really been a leader or organizer of anything! I do think this is something I’m supposed to do however. I’m really hoping more parents join and we all get something good out of it:-)

I will keep everyone posted on my group’s numbers and how I’m holding up as the leader!

I’m hoping things look up for the rest of the week. Monday, Luke had his 2 year well visit with his pediatrician. He was supposed to get 3 vaccines, but I talked the doctor into only doing 2. He has been pretty flexible as far as the vaccine schedule is concerned. The rest of the appointment was the doctor basically lecturing me about how Luke is no longer a baby now that he is 2. He said that we have to start disciplining and taking away his “baby” things and habits. He also said that parents with children with “special needs” tend to baby their children longer and they end up not being productive members of society. I told him that it’s kind of hard for me, especially since 90% of the time, I have to carry Luke. I told him that I can’t just put him down in the middle of his parking lot and tell him to crawl or scoot into the building. It’s easy for a doctor to sit there and say these absurd things to a parent when they have never had to parent a child with “needs”. I hate using that term, because society automatically assumes that if you say your child has special needs, that they have some sort of mental or learning issue. Luke does not. If anything, I would be more inclined to say that he is handicapped at this point more than special needs. Ok, that was me going off on my tangent about special needs! The doctor just really rubbed me the wrong way with this whole discussion. I’m not sure if he was singling us out, or if he says the same thing to all first time parents of 2 year olds.

Today we had mommy & me class. There are only 2 more classes left in this session. The teacher gave us the registration information for the next session. All of the other kids will be able to move up to the “all by myself” class. That class is like an intro to preschool. The kids get to go for 2 hours by themselves, once a week. The teacher told us that Luke will not be able to go because he isn’t walking. There are 2 teachers doing the class with probably 7 other kids. I don’t see why one of them can’t assist Luke. I was told that we can re-do mommy and me again, but they moved it to Wednesday for the next session, which is the same day and time we do PT.

I’m just really frustrated because it seems like the world isn’t set up for children (or adults for that matter) who don’t fit inside the “normal” box. I don’t think it’s fair for Luke to be left behind. What if, God forbid, he isn’t walking in time for Kindergarten? Would he not be able to attend the “normal” classroom? It makes me so angry and sad at the same time to think that he is missing out on things. He is a very smart and happy boy otherwise.

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.

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??