Posted by admin | Posted in Mommyhood, hypotonia | Posted on 22-03-2010
Tags: parents, physical therapy, special needs, support group
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!
How exciting! That is really thoughtful of you, well done T!
Hope it goes really well for you all. If there’s anything I can do to help let me know (not that I can help much from Oz of course! But if you want to make a button for your group to put on our Blogs to get the word out I’d definately put it up.)
I think this is a wonderful idea..So many people want to just share their feelings..
Thank you for sharing your story. My 3 year old daughter Kaylee has hypotonia, ataxia and dysarthia but is a healthy, happy little girl. She also has gone through MRIs and she has abnormal myelination, but we don’t know what this really means for her. She also wears AFOs for ankle pronation.
I also understand how you feel. I have gotten to the point where my mood always drops and I just want to end the converstation when they ask about our latest neurologist appointment or what not. I send them a mass update via e-mail so everyone has the information, but then they feel the need to call and ask more questions when I am kind of like, if I knew more, I would tell you more, but I have told you all I know. I love the relationship she has with our family, but these questions just weigh on me sometimes.
Wishing the best for Luke and your family.
Good for you!! I’m positive you’ll do an amazing job at this just by being the kind person you are. I don’t think there would be any certain way to run a support group – just being there for one another is what’s it’s all about.
Hugs to you.
Tilly where are you?!!!!
Hi- I’ve so busy the past couple months and just checked back on your blog- I am so excited for you that your in the midst of exciting developments. With you starting your group and Luke beginning to walk, “spring has sprung”! My little Gianna is spending more & more time standing up on her feet, and cooperating more in PT… she turns 18 months next week and then at the end of the month we go back to neurology. But I think things are looking good, as she has made progress!
how can I contact you… i read the post and I totally get the feeling.
I live in MIami, is it close from where you are?
I just send you a request through facebook.
i truly wish I could talk to you in person.