Thursday, November 12, 2009

One of Those Weeks

When we started this journey over a year and a half ago I knew I was in for some extremely hard work, sincere dedication, and definitely a roller coaster ride of emotions. Eighteen months ago I watched all these videos of deaf/hoh children and they provided me great hope - tremendous hope that one day my son would babble, tell me "I love you", yell at his siblings, all because he could HEAR through the miracle of Cochlear Implants. I know they say "EACH CHILD IS DIFFERENT .... never compare your child to another ... blah, blah, blah." I TRY MY HARDEST NOT TO, but how can you not.

I'm down on myself right now and I hate writing these posts, BUT, I think the reality of having a deaf/hoh child is that you have these days, no getting around them. I have reasons for being Miss Debbie Downer right now, which I'll get to. I truly believed that by the time my son was this age that he'd be further than he is ... because I've watched the videos, I've talked to moms.

I attend Auditory Verbal Therapy with him, I've put my career on hold and have become his full time mommy/primary therapist, I take him to an oral school so he can be around hearing peers for a language model along with their awesome language theme based program, I have a TOD and PT come to our house every other week, I read other's blogs and talk to other mommies to get ideas, I work, work, work, and work with my son (I mean PLAY, PLAY, PLAY), all to get these dang reports that make me wonder if I'm truly doing enough ... and now I'm finding out that we need to integrate even more therapies into our days ...

... and it is SO DAMN FRUSTRATING!

It all started Tuesday. Aiden has OT right after his class to help him with his gross motor skills (they don't have a PT program at the school, but still wanted to work with him). After his OT services, the therapist told me Aiden is having some fine motor skill issues and would benefit from at least an hour and a half of OT services per week. Great. Add it to the list.

THEN on the way home I open up the audiology report containing Aiden's soundbooth results.

NOTE TO ALL MOMS ... FOLLOW YOUR GUT! YOU ARE RIGHT! NO ONE KNOWS YOUR CHILD BETTER THAN YOU!

As I've written in the past, I was not happy at all with Aiden's last soundbooth/mapping appointment back in Sept. Going from 15-20 db across all frequencies to 25-30db was not okay with me. Plus I felt he just didn't react in the soundbooth like he normally does. I didn't feel good about any of it. I brought up my concerns with the audiologist (which wasn't his typical one), but was told things were just fine, he's doing great, 30 db is wonderful blah, blah, blah ... and I accepted it and went home, knowing my little rockstar had been at 15 to 20db since his first soundbooth after activation.

I then brought my concerns to his school audiologist to get a second opinion. She took our case history and got Aiden in the soundbooth as soon as she could, but he wouldn't perform. Then he had three ear infections, the flu, and respiratory issues all within the month. Finally last week, Aiden was cooperative, but she wanted to confirm her results the following school day - which was this past Tuesday.

When I looked at the results on my ride home my eyes just welled up with tears. I had known something wasn't right. Aiden flatlined at 40DB with his left ear, and with his right ear was at 30db/500hz, 55DB/1,000hz, and no response from there on out. My stomach hurt.

THE NEXT DAY (yesterday) we had an appt. at Hopkins with Aiden's primary audiologist and his school audiologist joined us there. His soundbooth results were better, but not much. The results showed he definitely needed some program changes, especially in the right ear where he was getting very little high frequency sounds. All I could think of was how we had to move forward ... don't think of the past, it was over.

Let's hope it's fixed. He'll be tested next week at school to verify he's still responding and then return to Hopkins in three weeks to check his maps again. We left there with four programs, one for noise, and two additional ones to work with if we feel he comes to another standstill. So glad his audi is back.

FAST FORWARD to today, parent-teacher conferences at Aiden's school. As we headed there, I read over the three page typed report from his teachers. There were A LOT of positives and he has transitioned well into a preschool setting. He likes school. But there's so much he needs to work on. A small example:
  • Aiden does not yet respond to peers who approach him without prompts from the teacher. While cruising around the classroom he requires prompts to shift his attention to notice where his peers are and navigate his way around them.
  • Aiden rarely turns to his name when called in the classroom (noise factor?) His teachers often have quite a bit of difficulty gaining his attention.
  • Aiden is not yet finding items on request and requires physical prompts to follow routine directions.
  • Aiden has difficulty attending to teacher directed activities even for a brief period of time (ex. reading a book).
  • Aiden has very inconsistent visual attention to fine motor tasks which makes it more difficult for him to complete these tasks and sometimes requires cues to look at the toy while he plays.

I can't help but look at this, plus others that were listed and cringe. One part of me thinks I started him too early in school ... he should be at home with me. But then, how much farther would he be behind next year or the year after? The bigger part of me KNOWS these concerns need to be addressed now. He needs to start learning NOW to compensate for his hearing loss and learn how to be successful in an oral, mainstream classroom, with noise. I want him to learn these communication/cognitive/social development skills NOW as to not further delay him in his hearing and speaking.

All of this has been such a huge reminder that my child is DEAF and even with Cochlear Implants he is going to have challenges ... not just now, but always. and today, I.hated.it.

I couldn't take anymore. We did discuss ways I can work, I mean PLAY, with him at home to help in these areas, but I'm feeling so spent. We're all hoping that a lot of these areas are due to his not hearing very well the past couple of months and that this revamp in his maps will increase his activity in the classroom as well as with his language.

THEN on the way home I opened up his Speech and Language Evaluation. Why do I do this to myself?!? I'm not even going to go there now. I'll write about it after his IEP meeting next Tuesday. I'll just say they weren't great. Definitely not what we see at home and reinforced my son is having trouble communicating in a group setting.

To end my day, I had a Dr. appointment for Aiden's sister to start her on ADHD meds (this is after a full evaluation including IQ and cognitive tests etc). By this time though I was done with any type of "test" results. While we were there I had them perform a basic hearing test (beeps and headphones) ... I wanted to rule everything out. Well, she was at 20 db in her left and at 40db in her right?!?! The Dr. said it could've been an attention issue. The test took five minutes, I know she has trouble sitting still, but not for 5 minutes! I have an email into our audiologist.

To overcome the whole day, on the way home we turned up the tunes, and JAMMED the whole way home ... SINGING our hearts out. I needed that. and the glasses of wine haven't hurt much either.

14 comments:

leah said...

Tammy, I'm sending a big electronic hug (and a bottle of pinot)!

Goodness gracious- that audiologist that said "30dB is fine" obviously didn't have his ducks in a row. With his right ear dropping off the map and his left ear at 40dB, no wonder the little guy isn't turning to his name consistently, etc. Nolan's unaided hearing levels are at about that level (60dB) and he doesn't consistently turn to his name when he's unaided. Essentially, Aiden's got a moderate to moderately severe unaided hearing loss with his current CI MAP. No wonder he won't sit for stories (he can't hear them- Nolan does the same thing when unaided)!

Were they able to adjust his MAP to give him better access to sound right then and there? I honestly can't imagine your frustration!

Kel said...

Plenty of hugs and pinot from me too! Danny just came out of a mapping session responding at 25-30dB and I am NOT HAPPY. I can't believe they told you 30dB is fine, that's bunk. Lots of support to you, and I'm sorry you're having such a rough week. I hate hate hate those weeks and totally sympathize.

Ben's Mom said...

Hugs from me Tammy. It is because of your love and persistence that his maps are now fixed. You are such a wonderful mom and advocate for all of your children. See you Tuesday.

Melanie said...

I know they say "EACH CHILD IS DIFFERENT .... never compare your child to another ... blah, blah, blah." I TRY MY HARDEST NOT TO, but how can you not.

Tammy-

I feel the same way. No advice, just know that you are not alone.

Kudos to you for going with your gut instinct about his mapping. Moms always know best.

HUGS!

Herding Grasshoppers said...

Tammy,

Cyber-hugs and cookies!

There will be days (and weeks, or maybe months) like this, but things will get better. You are doing a FANTASTIC job with Aiden. He IS learning and making progress. And he's lucky to have you :0)

When I'm at the end of my rope I pray from Philippians 4, "Do not be anxious about anything, but in everything, by prayer and petition, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I know I'm prone to worry and when I'm tired and anxious things seem worse than they are (which is bad enough, to begin with!).

May God give you peace,

Julie

Joey said...

That is so frustrating! You just need to remember that you're being the most wonderful mother to him and that you will help him get through these challenges. By reading all of the things you are doing (and how many times you mentioned: play, play, play) we can all see that you will overcome this! It's hard to have optimism in the middle of a crappy week, but progress isn't a steady stream. Good luck (and electronic hugs too!)

Kat said...

First of all, you are a WONDERFUL and AMAZING mommy! You are and will continue to do everything you can to help all of your children. You are allowed to have bad days and even weeks. I've found that it is completely normal...well, normal for those of us that have "special needs" kiddos (BTW, I have come to truly hate this term.)

Second, I feel like our boys are so similar it is scary. I got a 4 page assessment on Thomas' sensory integration issues and another 4 pages of things to do with him here at the house. Also, I have to add OT, focusing on sensory integration, starting after the holidays. Just from reading the blog, it might be good to have a formal and single assessment of Aiden by an OT that focuses on sensory integration and the vestibular system. While I've been in tears this week because of Thomas' SI challenges, I have learned a lot. The OT recommended that I get the book "The Out of Sync Child Has Fun." It is a book about how to incorporate gross motor, fine motor, sensory, balance, etc. "play" into our routines here at home. Yea, yea, like I need more things to do with him here at home -- give me a break!

Finally, your fear for Kaitlyn is exactly my fear for Sidney. A couple of weeks ago she complained that she couldn't hear out of her left ear. I removed some ear wax from her ear and she was better. So, I ask you -- did they check Kaitlyn's ear for wax? It can impact her ability to hear -- did they temp her before the test?

I posted on FB and on Yahoo groups that we do truly need to talk on the phone. I have a bottle of wine chilled in the hopes that we can drink and talk sometime this weekend -- day, night, middle of the night (because I don't truly sleep) -- you name it! I called your old cell phone number last night & got a disconnected message.

Hugs from Texas! Miss ya, sista!

Lily's Mom said...

Hi Tammy. How frustrating! I get concerned that our audiologist doesn't want to see Lily for another 3 months. I think with our BABIES we should be going more than that. Our babies can't tell us if something doesn't sound right or if something isn't clear. Lily's second sound booth was this week and she went from 20dB across all frequencies to a mix between 25-35 at different frequencies. They did some adjustments on her MAP, but we won't do another sound booth for 3 months. I think you're right, we just have to push for what we think is right. We are the parents after all. I hope things are better now.

tammy said...

THANK YOU all for your kind words and hugs! Very heart felt! We as CI/HA parents need to advocate for our child as much as we need to teach them to advocate for themselves. Unfortunately, at the age a lot of our CI BABIES are at, they cannot tell us "something's wrong". I have learned some valuable lessons here ... I wish I would've followed my gut from the get go and insisted on some changes immediately. So if you're not happy or see the slightest bit of change in EITHER ear (make sure you do the ling tests individually too!) I suggest to get them back in immediately and not wait (Aiden acutally wasn't scheduled to mid Dec and we would've been in sooner if his audi wasn't on maternity). My good friend Kat reminded me not long ago of what a highly regarded audiologist/AVT said and that's to never accept anything less than 20db!

and Julie ... I couldn't sleep at 2am the other night and was thinking of your comment! Thank you! It put my mind at ease and helped me fall back asleep.

Naomi said...

You are doing an amazing job. Well done on following your mother instinct.

AimeeTheSuperMom said...

I just wanted to add my love and support. I know first hand how frustrating it can be. Sometimes it feels like two steps forward and one (or three) steps back. And, I'm sorry, but it's impossible not to compare. It's just so human to want the very best for your child.
My Liam (Little Guy) is our second Deaf child. It is next to impossible not to compare him to CJ (The Beast) when it comes to so many things. In motor skills, Liam is miles ahead of where CJ was. But, in wearing and benefitting from his hearing aids, there is just no comparison. Why? Because they're two different people. I'm doing everything exactly as I did with CJ. I even assembled the same treatment teams for him. But, he isn't CJ. And CJ isn't him. And it's okay to mourn the fact that we are frustrated by the fact that perhaps one child doesn't succeed as another one does.
Please contact me if there is anything I can do. I feel like I'v been there and done that in so many ways. Most of my free time is spent working with parents of D/HoH children and helping to empower them to advocate for their children, and to learn to trust their instincts. The rest of my time is usually spent as a shoulder to rest your frustrations on. And, of course, to help provide validation. We all need some of that now and then.
You can contact me at my e-mail address, and I'll give you the number. Any time, day or night, I'm happy to help.
eyes4ears@cableone.net

JenandGreg said...

Hi Tammy!

I am active follower of your blog. You sent me the nicest email shortly after learning of my daughter Landri's deafness and was in the overwhelmed stage. I reached out to you for AVT help I do believe from the circle. You are such a wonderful mommy and Aiden's personality comes thru in every picture of him. He is such a cutie and I can tell just by looking at him that he will have the spunk and perseverance to be just fine! You are so good to follow your gut. You gave me advice in that email to be persitant and advocate for Landri. Bug, bug, bug those audis until they figure out what the issue is. You guys deserve the best. Anyways, I wish I had advice. Landri will be activated one week from today so I don't have any experience to offer. I just wanted to make sure to personally tell you that your blog has been a HUGE....HUGE....source of strength, education, and hope for me and my family. Can't thank ya enough! Can't wait to follow Aiden and how fab he will continue to do after you kick a little audi booty! Hugs, Jen www.halleandlandri.blogspot.com

tammy said...

Naomi, Thank you for your kind words!

Aimee, I'm putting your email in my address book! I know you have much experience to share and knowledge to teach! There are many lucky parents out there to have you!

Jen - your comment brought tears to my eyes. Thank you. You truly made my night. Being there for each other as a CI mommy community is so important. I know you have SO MUCH experience to share already! It starts the day we hear that word "failed". I didn't know you had a blog and am so excited to follow Landri's journey! I'm adding it to my blog roll and can't wait to hear about her activation! Bring the video camera!!! Hugs to you all!

Lucas'Mommy said...

Dearest friend,

I know I'm far behind in my reading. Know that I'm thinking of you and all of the changes your family is going through right now. I hope that a new map and walking (yay!) will give him the boost he needs. Hugs!!