#10 (Our Main Resources)

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This might be my last post for a while for a couple reasons. First, we really dove right in with all Finn’s treatment and therapy this summer so there is not a ton of major things/visits/news (relatively speaking) until we get closer to the CI surgery…reminds me of planning a wedding- you do a TON of stuff a year to 6 months before it and then there is a lull until right before when you are bombarded with last minute prep.

The second reason is because school start Monday and I go back to work. It is a much different feeling this year than any other. Usually, I am chomping at the bit to get back by this point, excited to meet new students and see how much my 7th graders have matured (or not!) over summer as they grew into 8th graders. The year Kayla was born was tough because I was afraid I would miss too much and guilty that I wouldn’t be with her when she was so small. This year is just wrought with anxiety. If everything was fine with Finn I think it would be a much easier transition to go back to work than it was after baby #1, just because everything is a little easier second time around, but the anxiety is more centered on how I am going to maintain the level of dedication and commitment to Finn’s treatment and maintain the high expectations I expect from myself as a teacher. The reality is that I’m not going to and I need to be honest and forgiving with myself (way easier said than done). I won’t be able to attend the Parent-Infant classes at the school for the deaf, I am going to miss some of the more routine appointments for things like hearing aid molds and check ups. On the teaching end, I am not going to be able to stay at school until 5 or 6pm three or four times a week. I am not going to be able to commit to doing much, if any, after-school professional development or meetings. I’m not going to be able to e-mail parents about every little thing that happens to one of the 120 students I have. The kids might not get an answer to their emails they frantically send me at 10pm about their homework. I HAVE to be OK with that though I don’t know how I will refrain from beating myself up about it…baby steps though. I know the people around me understand and that does make it ten times easier. Dan will be home with Finn for now and be able to take him to appointments; early intervention scheduled us as late as possible so I can make the second have of the weekly sessions; and I work with pretty much the best colleagues ever and have a very understanding principal who I know will understand that when I run out the door as the bell rings, it is not what I want to be doing, but it is necessary.

In the meantime, there is still a week to cram visits and appointments into and it is a busy one! We had another ABR for Finn this morning, possibly his last (though there is a slight chance they’ll do another at 6 months, but hopefully not). The results were the same, and when the doctor entered the room and told us that the results are showing that he is Bilaterally Profoundly Deaf (like they have shown at the last  FIVE other hearing tests) there was a TINY part of me that wanted to do a very sarcastic “Holy MOTHER OF GOD! THAT IS BRAND NEW INFORMATION” quote from the always quotable show Friends– (http://www.youtube.com/watch?v=tlBh82TFn0Q). It is weird though to step outside of myself and think about the difference between the first time we were told this and now and the fact that we can joke about that news makes me feel pretty confident in how far we’ve come.

Also this week, like every  week, we have Early Intervention coming. I haven’t written much about those visits here (there is more information about EI for ALL kids below if you are interested), but they have been fantastic. Our therapist is a Teacher of the Deaf and Speech Language Specialist. So far, since Finn is so young, she has mainly been a resource person. Someone to check in with, to make sure we have all the contacts/information that we need and offer her expertise in any way she can. As Finn gets older she will work on him with signing (she is a hearing person, but fluent in ASL and went to Gallaudet!)  and other developmental games/strategies. As opposed to his specialist doctors who focus on his hearing/ears, she looks at his overall development as a baby. If there was an area that had nothing to do with hearing, say for example, gross motor skills, she would also work with him on that. Luckily every assessment she has given him has him at or above his age level for every developmental aspect (besides hearing, of course). Interestingly, even his verbal/output skills are at age level as of right now and she said it is actually common for deaf babies to be at age level with that until 6 months old when most babies start forming more concrete sounds- this is one reason why before the Newborn Hearing Screening started, most babies weren’t identified as deaf until at least 6 months old or later. The awesome part about this is that if his development stays on course like this and he gets his CIs at 10 months and activated by 11 months, he really only misses out on 5 months of speech development. This is another reason why they are pushing for earlier CIs. There is a VERY good chance that speech-wise, by the time he is in school, people won’t be able to tell he is deaf from the way he speaks, which I am sure you can imagine is huge both developmentally AND psychologically. The other reason hitting all the milestones on time is huge for Finn & us is that it continues to rule out any syndromes that could have caused his deafness. At this point, they are thinking it is probably genetic, but we don’t know which gene and if that is linked with anything else at this point, but every time he reaches a milestone or another test comes back, we get to rule out certain additional concerns.

Hmm this is a bit personal, but I think it is important to share… With Kayla, each developmental milestone was celebrated in a way that only 1st time parents do. Her first smile, laugh, roll-over, holding her head up, etc. all these things are made to be such a big deal- phone calls made/texts sent/Facebook statuses shared for each little accomplishment. With Finn, to be honest, I thought this would be dampened a bit. I mean, besides the whole second-child, been-there done-that thing, right after his diagnosis I figured, why would I bother worrying about the exact moment when he did these “minor” things when it would be overshadowed by what he wasn’t doing? I thought a lot about how the time would come and go when he was supposed to babble and he didn’t. I thought about how he might not like games like peek-a-boo because he didn’t hear us behind our hands giving him a prompt that our face was about to pop out, and he would be startled or scared instead. I thought I was just going to have to accept that he would be delayed and that was all there was to it. But something our SLP said to us early on helped change that attitude. She said that yes, MANY deaf children are delayed in certain areas, but he doesn’t HAVE to be. With the right services and therapy, deafness does not necessarily mean there will be a developmental delay. Are there differences? Yes, of course. We sat three rows back at the Irish concert at Folk Festival and he was happy as a clam no matter how loud they played!  He watched fireworks at 2 months old and was completely entranced by the lights without the negative of being scared by the sound. When he turns 6 months will his VERBAL output be the same as a hearing 6 month old? No, but will he babble & start to “say” versions of words that will turn into real words? YES, he will just sign them! Babies exposed to sign early on can start a form of signing that is very much babbling, just with their hands instead of their mouths!

I have heard this analogy before, but I heard it the other day form our new pediatrician (who is AWESOME by the way!) and have to share it: When we had Finn it was like we got on a plane, thinking we were headed to Spain for a fantastic vacation, but the plane landed in Holland instead. It is still going to be a great vacation, just not the one we were expecting to take. I LOVE LOVE LOVE that and was so happy she reminded me of that so I can apply it to our life. Because, it is not what we were expecting. We were not expecting to be shuffling back and forth to appointments, to be learning a new language, to be preparing for our baby to have a major, life-altering surgery, but you know what? The people we have in our lives because of this unexpected trip, have enriched our lives in more ways than I could have imagined. The people who have reached out from all aspects of our lives, old friends, new friends, even a couple people we might’ve written off as not part of our life anymore, doctors, specialists, nurses who know exactly what to say, ASL tutors, a CI user who said “it’s a great time to be deaf!”, Deaf people with a capital D!, a new pediatrician who might just be where I wish we’d been the last 4 years, people in the Twitter-verse & Facebook-land who share resources or encouragement, kids & adults some of whom face far worse diagnosis’s who inspire us, all of these connections that would not have been part of my life if Finn was hearing. I won’t sit here and pretend and say that if I could go back and change history and make Finn hearing I wouldn’t, because I probably would just to spare him any difficulties because every parent wants to spare their kids from difficulties if they can, but I also won’t say that it has been a bad thing. The future is still SO up in the air. How will the surgery go? How will his results be with CIs because everyone is different? Will he go to a mainstream school? If so, what school system will he end up in?  Will he identify as part of the deaf world or hearing world? The list goes on and on, but one thing I know for sure is that NO MATTER where the future takes us, we are not alone and I am a better person because of the people who have come into my life in the last 4 months.

Speaking of connections, we have made a lot of connections both in-person and online with people over the last few months. I figured it might be nice if I  left you all with a list of resources we are using in our life, that way, if others are needing assistance or a connection, they might be able to find it here. Also, my hope is that if there is anything not listed here that might benefit our family, I’d love the feedback. For people in the Twitter-verse, we are Massachusetts-based so that is where our services are centered, though I am sure there are similar services in every state.

This list is quite dense, so feel free to skim it for information that applies to/interests you and yours. The list is in no particular order of importance (I hyperlinked sites when available):

Family Sign Language Program: This is a FREE service for all families of d/hoh children. Ours is starting October 3rd. Just to give you a heads up, we contacted them at the end of MAY and this is the first time a tutor is available, so DO NOT WAIT until the recommended 6 months old to contact them! The cool part about this program is that an ASL tutor comes to your house once a week and will teach  ASL to ANYONE who is in your child’s life. This includes all relatives, siblings, child care workers, teachers, friends, literally anyone who has contact with your child and wants to come is invited. Pretty cool!

Shared Reading Saturdays– basically this is an English teacher/parent of a deaf child’s DREAM!. Once a month you go to Northern Essex Community College and learn how to sign an entire children’s book to your child. They teach you the signs, strategies to help with understanding (I’ve noticed a lot of these are similar to how we should read to our ESL students!), activities for the kids- hearing siblings welcome, yay- and then they give you the book (and I heard a rumor they will start giving a DVD of someone signing the book, too) for the month to read at home. The next month, a new book is taught. AND it is on Saturdays once a month so I can go- yay accommodations for working moms : )

– Anne Sullivan Center/Early Intervention– Parents of Infants HEADS UP! Early intervention can be awesome!! If anyone is reading this and they are having a hard time in ANY development area with their child age birth to 3 years old, contact them! It is NOT an admission of any failure as a parent; it is a fantastic, FREE resources (for kids who qualify) for any parent to get professional advice on any development worry you might be having. Since starting with them (it’s pretty much a given that any deaf child will be automatically enrolled in EI) I have realized how many people could be utilizing these services who probably don’t even know about it. If you want any info, please let me know. I COMPLETELY understand what it is like to want to feel like super-parent and to think, hey I am intelligent, I have read every parenting book, magazine & online source out there, I don’t need some outsider’s help. Let me tell you, this is not the case at all (from my experience). Their role is to facilitate helping your child develop in a way that works best for YOUR parenting style. I talked above about our experience with our Teacher of the Deaf/SLP, but they have specialists for every area including OT and PT.

– Boston Children’s Hospital Deaf & Hard of Hearing Program: I feel like I have bragged a lot about how awesome Children’s is. This program is just another way they go above and beyond offering many professionals who specifically deal with d/hoh children and, just as important, fun, free, events for those families, like the Discovery Museum trip last weekend and a Drumlin Farms field trip a few weeks before that. So far, the kids in this group seem to mostly consist of device-wearing children (hearing aids or CIs) and communicate a lot through verbal communication, but there is some signing going on too. Best part is that most of these events are nights/weekends so again, the whole family can attend!

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Us with the Discovery Dinosaur

The Learning Center School for the Deaf Parent-Infant Program: This is an ASL zone! Interpreters are available, but mostly ASL is used on campus, which can seem overwhelming at first, but really forces you to pick up on things. The PIP is mixed with both hearing and deaf parents and when you go there is a half-hour playgroup time for the whole family and then they take the toddlers and older kids for an hour to do fun activities (including hearing siblings!) and offer a parent support group to us with experts in all types of concerns/areas that you will face as a parent of a deaf child. Everything from IEPs to social issues to just venting about normal parenting issues! They also have “Silent Dinner’ events and other get-togethers. They treat you like you are joining a family and have been more than welcoming to us. Downside is they are in Framingham which is a hike & half for us and a lot of services are during the school day since they are actually a school and so that counts me out of most of their services. Dan will continue going while he can though and we hope to maintain a relationship with them especially on vacations/summers. As opposed to the Children’s D/HoH group, a lot more kids here rely on sign and not nearly as many hearing devices are used. That is not to say that they are frowned upon! Contrary to stories we have heard, we have NEVER encountered even the slightest conflict or judgement from a deaf person when we say we are having CI Surgery. Ha, actually we have only ever been given attitude about it by one person and she was hearing! Dan & I are also looking into taking more advanced ASL night classes here if we can manage to drive to Framingham at night weekly & get a babysitter for the kids…we’ll see!

Massachusetts Commission for the Deaf and Hard of Hearing: my opinion is still not formed about this resource. Dan & I met someone who was part of the MCDHH & someone formerly part of it at the CI convention and they were totally AWESOME people who had so much to give. The MCDHH will be  helpful if/when Finn is mainstreamed in the school system, helping with IEPs and offering services in the classroom. They are also an unbiased resource so they can give us  objective facts about programs and other service providers, but so far the problem is that our representative has not been overly helpful. I feel like I am being a little unfair, but I did contact them MANY times (& then had EI start contacting them) and heard nothing until we randomly ran into her at the CI Convention. She said she had seen our file & we were so on top of the game that she didn’t want to bother us at this point. Still, a phone call or email would’ve been nice…I’m a little bitter about that one, but I have been told that they are more than overloaded right now, which I can understand as a fellow “state employee” whose “caseload” is overly filled in the form of 35 kids in my homeroom. I will wait to form a more concrete opinion…

Boston Children’s Hospital Cochlear Implant Program– yet another aspect of Children’s we are utilizing and probably the most important. If you are in New England and are thinking about CIs for your child at least meet with them. We are very lucky to have Mass Eye & Ear and Children’s and now Tufts Floating Hospital all doing CIs with great success rate all within one relatively small city! Wherever you choose to go, you will be in good hands, but, for us, it had to be Children’s. We have been a part of all 3 hospitals in the last 4 months and there was no contest when it came to where we felt the most comfortable. It is part gut feeling and part research, but there is not a doubt in our minds we made the right choice for us. They (obviously) only work on children so that is their specialty. Also, say you go to another hospital for CI. You see the same specialists, but when you are referred to the psychologist (which all CI patients & their families are) you go to the Psych department. When you go to the ENT, you go to the Otolaryngology department. When you go to the audiologist, you go to audiology. Make sense, right? Not at Children’s. When you see any of the above, you go to the Cochlear Implant branch of the D/HoH program. They have their own wing!! The psychologist can walk down and ask the audiologist a questions and then three doors down get additional info from the ENT. It is incredible! Again, I cannot say enough about how much I love this place and I am looking forward to working very close with them over the next 6 months and then, seeing them every 3 to 6 months until Finn is in his 20s! t is quite the commitment and I am very happy with our choice.

Foundation Pediatrics– there is a reason I wanted to mention our new pediatrician. As you may have read in past posts we had to switch pediatricians because our last one was not affiliated with Children’s. This was a hard decision because you tend to get attached to the person who cares for the health of your child and we certainly were. Now that have visited our new pediatrician and her nurse practitioner with both children, I am SO HAPPY we made the switch. Not only because I am happy I didn’t back down from getting the services from the hospital I thought was best, but I’m very impressed with how this whole office has handled our situation. The DAY I called to ask to join their practice, I was in touch with a nurse who listened to my story and had referrals for ANYTHING I needed for the rest of the summer, no hesitation. The receptionists, nurses, and everyone I have encountered so far has been friendly & helpful (which was a drawback from the last place where I could tell you a HORRIBLE story about their AWFUL receptionist, but I don’t want to bad mouth on the internet : ). When you have a child who is going to be going to a million different visits, you need a doctor and office that is flexible, timely, and understanding and I think we have found that here. I am happy we made the decision to switch Kayla here as well and don’t even mind the hike up to downtown Nashua for appointments!

Besides these resources, I am serious when I say Twitter and Facebook (and to a certain extent Tumblr) have been fantastic assets for making connections. People joke all the time about how they have a certain number of Facebook “friends” or Twitter followers who they never even talk to or would never talk to in the “real” world, but I’ve found some of those very people are the ones who have sent a link, put me in touch with a person, or offered insight into something that I would never have known about had it not been for them. Social media gets a bad rap, but use it to your advantage and it can be a powerful tool!

Hope that was helpful and that I am not forgetting anything! Please contact me if you have any questions, comments, additional resources, etc.

Facebook: Katie Mahoney Moriarty

Twitter: @HearsToFinn

Email: KatieLyn2212@gmail.com

 

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2 Responses to #10 (Our Main Resources)

  1. jeannie nadeau says:

    Wonderful summary and update. I think all your entries are valuable resources for any parent or family member whose journey includes unexpected challenges. I feel deeply grateful for your blog send love and hurrahs that you are finding caring and skilled professionals and amateurs, i.e., other families with deaf/hoh members. With love from auntie jeannie

  2. katielyn22 says:

    Here is the actual version of the parable I started to tell about landing in Holland. Much better version:
    http://www.our-kids.org/

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