Saturday, November 28, 2009
The Opportunity to Move - When we moved to Maryland, we knew it wasn't for good, that it would be a small chapter in our book of life. Well, we're about to start a new chapter. Aiden's daddy has been promoted and we're moving back home to the Midwest! We will be so much closer to family and friends and I cannot wait! The opportunities this move provides for our whole family are tremendous.
Memories - This time of the year is very hard for me. It seems like Thanksgiving two years ago was my father's last "good day". It was after this that things spiraled downward and before I knew it, his time to leave us and join his parents in Heaven had come. But this year, after a good healthy cry, I took a step back and smiled. I'm so thankful for all that he taught me, for all he was to me; so thankful Ryan and Kailyn got to know their grandfather and that he will always hold a special place in their heart. Thankful for the memories ... and the smiles these memories bring.
My Husband - We have been married for fifteen years and he is truly my best friend. He makes me laugh, he is my strength when I am weak, my confidant when I need to let it all out, my partner when making tough decisions, my everything. He works very hard to provide for our family which also allows me to stay home with Aiden. I miss him by the end of the day. For all he is and the unconditional love he gives, I am so thankful.
My Parents - A lot has gone on in our lives the past couple of years and without the lessons my parents taught me growing up, I don't know if I'd be as sane as I am today. One of the biggest lessons they taught me was to cope, not to run and hide. But even more so, to have faith, because even when it seems it can't get any worse, it will, BUT things will get better. And they do. Head up, open up that heart and mind, and face those "opportunities" head on knowing the good Lord above is right there beside you (and so is mom)! Thank you mom and dad ... for you two I will always be thankful!
Cochlear Implants - Of course I'm thankful for these every.single.day. I can only imagine how different our life would be without them. Yes, we'd learn ASL and we'd learn how to communicate in a different way than what we've ever known. It wouldn't be easy, but we'd do it. Because of CIs though, we don't have to. Aiden has been provided with a technology that gives him the choice to hear and therefore speak. Our deaf son is hearing all the beautiful sounds our world has to offer, hearing the laughter and sweet nothings from his family. And for this, I am beyond thankful.
A Happy Heart - smiles and laughter and hugs and kisses from my kids + memories + girlfriends nights out + in laws I absolutely adore + the purring of my cats + a niece or nephew on the way (finally on my side of the family) + the best grandparents + love all around + a ridiculously funny husband who loves and supports me very much and is my best friend + my amazing mom + the sound of my deaf son laughing and speaking + a nice glass of wine ALL EQUAL a HAPPY HEART ... and for this I am truly thankful.
and last but not least ... I am thankful for Aiden finally walking more than crawling, which will help me get less packing done for our move, and "Elmo" who is a huge help, especially while trying to pack!
(make sure to turn the music off on the left)
Hope you had a wonderful Thanksgiving.
Thursday, November 12, 2009
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.
Monday, November 9, 2009
He has even attempted to say his own name, is sounds like "Ay-en"!
Aiden continues to try to walk. He's going further and further, but just is not taking off. He can walk clear across the living room, will look at us, then fall to his knees. Frustrating but good that he continues to try.
He is trying to blow ... bubbles, a piece of paper across the table, my hair, anything. We've been working on this to help him with his "oo". It's hilarious! He either lets out a big ol' raspberry or has a wide round mouth blowing out, like sounding out the letter h.
He is trying to imitate us more, but mainly just the number of syllables. For example, for banana, he will say "ah-ah-ah" or pumpkin (and open and many other two syllable words) he will say, "uh-um" or "ah-um" and with each one he inflects his voice.
He's trying out /p/. I have been working on p since last summer! He's been saying "uh, uh, uh" (up, up, up) for some time, but I've heard it with that /p/ a few times now. We've been blowing a lot of bubbles lately too to help that /p/ POP!
His receptive language is growing. I really need to sit down and write a list.
He doesn't cry anymore when I drop him off at school! He smiles! This is HUGE!
the BAD Aiden is still stuck on the same consonants and same vowels. We have m, b, d, and sometimes n (although it seems we've lost it). Then put these with the his vowels of "ah" and "uh", and so consists his vocabulary list.
Even with all the HallOOwEEn sounds of /oo/ and /e/, still nothing. For /oo/ we get a deep, nasally /m/ and for /e/ we get that gasping for air sound.
He's still not walking.
I have to say though that my little monkey makes me smile all.day.long. He has such a great personality, so much spunk, is such a little comedian, and truly is always happy (even when he is screaming, he laughs at himself when he's done ... he thinks it's funny ... I don't).
So there you have it ... so glad the "good" list is longer than the others! Although I have concerns with his expressive language and his maps, I do believe he's doing amazing. I look at him everyday and can't believe my baby is deaf. We have an appointment Wed. with our Hopkin's audiologist to hopefully clear up these mapping issues ... hope this adds more to our good list!
Sunday, November 1, 2009
but Aiden sat alongside daddy,
helping out the whole time!TrIcK aNd tReAt!!!
Kailyn was my little chef, head of the kitchen
while Aiden cleaned up the mess. After taste testing all our yummies,
the kids got all dressed up to
go collect even more sugar!
Aiden's sister was a "good" witch,
Aiden's brother put on his Yankees
Then there's my little monkey,
whose costume fit him perfectly,
in more ways than one.
(actually sitting in his stroller)
When we got home I went to change
and my little monkey immediately headed
to his favorite place - his sister's room
to find his own monkey business,
aka - up to no good.
The costume was definitely a good fit.
All in all, we had a
SpOoKtAcUlAr EvEnInG!Hope you did too!