This isn't the post that I would like to write after an "extended holiday break" from posting. I really just needed to do this post. Today. So, please indulge me, if you will.
I have been searching far and wide for programs, play groups, whatever, for Bud in an effort to give him more opportunities for language skills with his hearing peers. It's also another opportunity for him to just plain interact with kids his age. Our oral deaf preschool has zero openings, we're not getting any help from our service organization so I'm grasping at straws here.
It was exciting to discover that there was a small music class going on in our community for toddlers. Thirty minutes in the morning, one day a week. Perfect. It started today. Bud had a great time. You have to understand that he lives to be the life of the party and very sociable. It was not a good time for me, however. As soon as all of the kids came into the room it was striking to see how much more older they seemed compared to Bud. I guess it was the language thing. They also all sat with their moms and were calm. Bud did not want to sit with me as he had to be walking around the room and checking in with everyone. You also have to understand that Bud is extremely active, dare I say, hyper. He is constantly moving, even if it's to walk around a room, and being compelled to touch lots of stuff. I realize that this is probably a component of the LVAS and the sensory seeking that oftentimes comes with hearing loss in kids. I can explain all of this away as much as I would like to, but it still deflated all of my excitement about how well he has been doing lately with his language and first words. Being in that room with those other toddlers who sat still and answered all of the questions asked of them and following commands deflated my excitement just like someone sticking a gigantic meat cleaver into my balloon which had previously seemed indestructible as of late.
As soon as that class was over, and I wrangled Bud back into the car, I got in the driver's seat and just completely lost it. And I continued to lose it off and on throughout the rest of the day. All I could keep thinking about was how different my child was compared to the other kids. I hate saying that. I hate thinking that. It is terrifying as a mom when you are worried sick over how your child's well being. Will he be happy? Will he want to interact with other kids? Will he be too shy? What if he gets picked on? Will he recognize that he is the only kid here that has "super ears?"
Again, I am extremely grateful for this technology. My child can hear almost as well as we do. You just tend to forget that this is still a long process with lots of ups and downs. This was definitely a down period today. We just have to work our way back up.
My son also has Mondini's diagnosed at 15 months. He is now 6 years old, in a private mainstream school (he had to have an oral interview to get in) and doing awesome. I remember those days. All the other kids seemed so far ahead of him. If you keep up the speech and reading, he will catch up!! Now, my son's language and vocabulary are ahead of kids his age. It takes a few years, but it can be done. Not sure if you are doing OT, but that can help with some of the sensory issues. Hang in there. I promise he will catch up and you will look back on today and wonder why you were so concerned.
ReplyDeleteThank you so much for this! It really helps to hear about others' stories and how their kids are doing after a lot of hard work. There are days that are really good and then there are those days where you just worry. Your story gives me hope so I truly appreciate you stopping by to tell me your story!
ReplyDeleteJust wanted to let you know that in Peter's music class there are several boys who jump around, walk around, try to open the cupboards, etc. there are also timid ones who never leave mom's side, and there are some who observe, and others who dance and clap along. You just don't have a big enough sample to see that your son's behavior is perfectly normal! All kids experience music differently, and learn differently, or are at different stages of music competence. Don't beat yourself up! It has taken Peter several classes to enjoy himself and now he is clapping or singing parts of the songs in the car (never in class, mind you!) but our music teacher taught us to totally expect that ;) Music Together has a lot of info on what to expect as your child moves through the stages of music competence, and they tie so well with aural rehabilitation. Let me know if you want me to send you more info :)
ReplyDeleteThanks Ellen! And I know that this is a process and the differences in personalities and learning styles among children, I guess that I was too wrapped up in being an emotional wreck. Our biggest problems is that we have virtually no resources here for hearing loss despite having one of the best medical facilities for implant surgery. However, we are scheduled to be moving by the end of the summer and I am hopeful that there will be more opportunities available. There are only about 6 kids in this class and Bud just happens to be one of the more outgoing and adventurous types. He never did anything that would be considered "misbehaving," but he loves to wander and explore while chatting up everybody who is around. It's just that he was the only kid in this class with that type of personality. I have to admit that after composing myself, I consoled myself by recognizing that Bud has his own distinct personality that tends toward the non-conformist side just like his mother's! Thanks, Ellen for the pep talk. I guess that despite our kids' progress, we will still have those days.
DeleteHi my name is Heidi and I found your blog awhile back when I was looking for others with kids with hearing loss. My son, who just turned 2, was diagnosed with moderate to severe hearing loss and got his first set of hearing aids at 2 months old! I just wanted to say that as I was reading this post I felt God just telling me to reassure you that you are not alone! I too compare Cooper to other kids and get down when I see how behind his language is compared to others but I heard this saying at church and I have tried to live by it...it is "Comparison is the thief of joy!" I felt like I was taking away all the joy my sweet cooper had to offer just because of the fact that he isn't like all the other kids and for that I was so sad to realize I was doing that! Both our boys are God's amazing miracles here on this earth and I know that God made them this way for a reason we just have to be patient, keep our head up, and look forward to finding out what their purpose is! Take care!
ReplyDeleteThank you so much Heidi! Yes, I think God was telling you to post! We get so worried about our kids and we also have those days when we feel so overwhelmed. I was having one of those days. Thanks again for commenting and I would love to know how Cooper is doing!
DeleteHi, my name is Rajeev, and I recently started a user-generated website for reviews of music for cochlear implant users. I came across your great blog. We are trying to get a number of reviews prior to launching our site and I am writing to ask if you/Butters write a single review on his favorite song or any other musical work. It was interesting to read that Butters attends a weekly music class, and a review could be very informative.
ReplyDeleteThe review could be fairly short ~3 sentences.
We could definitely provide a link to your blog, as well.
Here is a link to our preliminary website: www.EdisonParkMusic.com
Thank you!
Rajeev
I would love for you to keep up with how Cooper is doing and follow our blog! We just recently decided to make our blog private so if you don't mind sending me your email address so I can so what the blog world calls "invite" you to be a reader that would be wonderful! Thanks and sorry for the inconvience!
ReplyDeleteI am so late on catching up with your posts, but let me just tell you, Hunter is the EXACT same way. We have been going to Little Gym since he was 10 months old. It took him a very long time to stay in the middle on the big red mat and actually join the class exercises. I thought we had it down pat until a month ago when he was moved up to the 3-4 year old class. I had no clue that parents weren't in this class and it's just the kids. I felt like I was dropping Hunter off at his first day of preschool with no warning! He went in and did fine, I was the one who was scared to death. What if his ear falls off? No one else knows how to put it on but me! This new class is a lot more structured. They sit in a circle and listen to a story then play in groups together. For the last month, Hunter has not really wanted to do anything the other children are doing. I am constantly asking the teachers what the deal is but they have reassured me that it's normal since he's in a new class. They say it takes 2-3 classes for him to start participating and he's been to 4 now and he still isn't. But what can I do...? Anyway, you aren't alone in your worries. We are in the process of building half an hour away and the process of sending him to an actual preschool over there is giving my hives. Just remember you aren't alone.
ReplyDeleteAnd I'm so sorry over the loss of your father, I can't imagine.
Elise, Thank You, Thank You, Thank You! I have been worrying about sending Bud to a preschool and I really think my biggest problem is letting go. He is ready for a school setting, I think. He loves his music class. I'm slowly building myself up to make the inquiries about several schools and programs. It makes me feel better to know that Hunter is doing great and that he is having fun doing his own thing! Good luck on the building and moving, I know it's a stressful process. We will be getting ready to move (again) towards the end of the year. And those latest pics of the boys on your website are adorable, they helped lift my spirits the other morning! Keep me posted on how Hunter is doing.
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