Living in the Land of the Hearing..

So, my husband got his new hearing aids last week and while I know that the one will not help him entirely to hear, I've found myself shocked at how well these new ones work for him!

He still asks me "what" a lot of the time but, he can actually hear me!! The first time in 9 years and it is bizarre. I've found that over the years whenever we would get into a disagreement, I would mumble under my breath with my head turned and felt quite comfortable knowing that he could not hear me. He still can't hear me exactly but, he can hear that I've said something...whoops! :)

I've found that since our oldest son has gotten aids that I have become painfully aware of how much I made them both live in the hearing world. Making no accommodations or being forgiving when their hearing didn't jive with how I perceived the world. All I saw was my burden of having to answer the "What" all the time or having to go to every conversation that my husband would have, every doctor's appointment, etc just to retell the whole conversations all over again. I always had to be within arms reach of the phone as no one else ever heard it ring. I suppose I could go on and on with "burdens" but, as I said, I've become painfully aware of all that they've had to endure from the d/hoh end.

They both couldn't go anywhere without me because neither one of them could hear people. Neither one of them wanting to ask someone more than once what they said. Not to mention that people looking away as they spoke made it much harder for them. So, they both became reliant upon me to relay communications, even between each other.

My voice especially happens to fall within a range that is hard for them to hear as well. So, my ever growing frustration with having to repeat things, always have to be around one or both of them, having to rely on someone else to do phone calls, drive thru window orders, etc with a voice that neither of them could hear very well...I can't imagine the frustration.

I've taken my time now to lower the tone of my voice and raise the sound of it, to face them when speaking and make sure that my stepson does as well. I still turn down the TV now when they are speaking on the phone, out of habit and courtesy. I still am there for every conversation, meeting etc but, the need for me, is less. It is a nice feeling!

While I am glad that they are hearing better, though I often wonder about DW's as he still asks "what" a lot, I have come to realize what a hearing world often asks of it's d/hoh members. So, instead of making my husband and oldest son live in my world, I am endeavoring to live in theirs. It is a novel idea to say the least and with DW and his TS+ it is still not easy but, I am giving it a hearty go!

*Though when your son turns to you and says, "if you don't start being nice, I'm going to shut my ears off", it may not be a good sign! :)*

Had a moment...

I wish I was one of those moms who could switch the diet and he was miraculously better. Since he has Sensory Processing Disorder though, and oral issues are a BIG deal to him, that is not possible for him. I wish that he didn't have ALL that he does and that medication hadn't become necessary.....I could list my wishes all day long I suppose.

The other day, it just got to me a bit. I have those times when I look at my son, his tiny, skinny little body. The same body that we're fighting to keep above a certain weight line so he will not be diagnosed as failure to thrive again at almost 6yrs old, the same little body that now seems so fragile compared to other kids his age and it becomes a bit much.

I got him up this morning, put on his feet and ankle braces, checked to make sure his hearing aids were cleaned and put them on, mentally reminding myself to call his audiologist to see if we can get a new mold for his left ear. I went to the kitchen to get his meds. I grabbed the medicinal syringe as always, opened the Vyvanse capsule and dumped the contents into it. I carefully split his Inderol and crushed it, putting it into the syringe. I pulled out an additional pill for him to swallow. Filled the syringe with the Periactin. I got the Intuniv out and sat it next to the Inderol pill. I got out the new medication, Abilify and carefully put it next to his other pills to swallow.

I got his juice, his pancakes and headed to give them to him....I saw my little boy, sitting there happily watching the Disney channel. Looking content, his Ironman braces peaking out from under his jeans and over the tops of the shoes he must wear all day long. I saw his hearing aid light flash from behind his ear, to let me know that they are still functional. I felt the weight of the tiny pills in my hand and mentally counted the four medications to make sure that I had not forgotten everything. Realizing that I was only missing the Trazadone, which is his nightly medication to help him sleep, the thought crossed my mind to remind myself to call the doc again as the Trazadone was once again going to need to be increased. He just adjusts so fast to his medication.

Then it hit me, my tiny little man, with the aids, the braces and his two Blue's Clues pillow/dolls next to him, was taking four medications this morning, two this afternoon and two at night, five in total. My sweet DW was going to be taking all this. It broke my heart.

Holding back tears, I gave him his juice first (yes there is an order, there is always an order to things with him), then I emptied the syringe, handed him the "blue oval", the the "blue round" and then the new bluish pill. Thinking that most kids would object to yet another thing that they have to swallow. Instead, my sweet angel looks at me and says "why do I have a new blue one?" I tell him that it's been here just had to adjust his other meds before we could give it to him and it's to help him with being angry and feeling upset sometimes. I don't dare mention that it is to help you not panic when we throw things in the trash, like wrappers, bad food, etc. This will always cause a panic attack in him. My brave little guy, just looks at the pill and says "ok". No real hesitation, no fit, no nothing. I was so proud of him and then a little saddened as I realized that this is just normal for him. That it is like putting on socks or changing your shirt.

I am very thankful everyday as things could be much worse but, sometimes, days like today, it gets the best of me and I have these moments where the tears are just too much to hold back. To look at YOUR little one and see all that they are doing, have to do, all that they endure, no matter the disorder, I don't think that it is ever easy.

New medicine - again and a good day.

So, we tried another medicine to help lessen DW's tics. It was along the same lines as the last but suppose to be less as strong as the first or something like that. Within 48 hrs the same thing began to happen. He began to wet himself and by the next day, he again had diarrhea and this time, there was more than a speck of blood in his stool. So, we stopped it yet again. Not sure why though but, even though he's not taken any of the for more than a few days at a time and hasn't taken any in almost a four days now, they seem to have affected his tics. So far in a positive manner!

The blinking that he's had for years, the kind that contorted his face constantly, all day....it's very rare to see it now! Even on a down swing, this is the one tic that never went away, it was almost painful to watch even, his whole face would contort. In the last two days alone I can count the number of times I've seen it on two hands and feet, which is amazing. The HARD, sniffing and hiss breathing is so mild, that I don't even notice it unless I'm looking for it. He has gone from several dozen tics a day to just a handful!

The one that is probably the most annoying to everyone else though is the repeating thing. For example, today he said: "hey mom, I think we need that. Yeah I think we need that." or "I want nuggets for lunch, yeah nuggets for lunch". Seems to bother his cousins and stepbrothers more than me for some reason. Maybe it's hearing near silent grunting, no terrible sniffing that sounds like his head might pop off, no loud hissing after the sniffing, and loud triple grunting following all of that in less than thirty seconds. His tics are softer now, not OCD like - needing to be in groups of three or fours, they are random and mostly not back to back even. I don't really know if it happened from the meds or if it will last even. It could be just a big coincidence but, I will take the reprieve. Even DW seems a bit happier as his tics are not running rampant and wearing him down.

He's even taken to realizing that he cannot hear properly. So, instead of repeatedly asking us "what" a hundred times. He now walks up to us and asks us to repeat what we've just said. Which is nice for him and myself. His cousins had a time adjusting to his hearing today as they've not paid him much attention before but he told them he's getting hearing aids and they asked me why. We talked a little about what DW can and cannot hear. Which also led to a discussion about why Dathen repeats and what a tic is. So, it was a good afternoon for everyone.

So, for now, it's back to the drawing board for the tics but, I can wait. For right now, he seems ok and that is all I ever wanted for him. We'll also keep a positive attitude and hope that this lasts. :)

Hoping and Wishing and Thinking and Praying.

So tonight and tomorrow will be the tough.

Tonight they once again try him on a new medication to ease the tics and they couldn't come soon enough. When he gets upset or angry he smacks his head, HARD. Over and over and over again til he's crying but, he still cannot stop! If it's not that he'll claw at his arms and legs over and over and over again! If one more person tells me it's attention seeking behavior though, I may loose my marbles. Attention seeking behavior is behavior designed to get or maintain attention. When your child is doing it alone in his room because a toy is frustrating him, without calling for help or making a big deal out of it over and over again and doing it daily, it is not attention seeking. It is a part of the whole lovely package that goes with having TS child. So, I hope that this medication works for his level of tics and can bring them down like the last one did.


Tomorrow, is the ENT followed by the ear molds....I'm VERY worried about this. I don't know how he'll respond to the ear mold process and the feeling of something not only in his ear but, essentially blocking the hearing almost completely in one ear and then the other. I'm scared of how this will go and if he looses it, I don't know that I can calm him down enough for another ear. I really hope it goes well.

I've found a couple videos online that show him pretty much what the ear mold process is about and roughly how it will feel. Though, as I've never had one, it's not exactly easy to explain!! I wish it was done and over, that's how worried I am! I'm just praying like the dickens that this goes over well tomorrow and that if there are going to be any side effects from the meds that they do not interfere with tomorrow morning!

Three Signs of a Good Day!

First sign: DWs first dose of the new meds to help control or lessen the tics he has is down. Though I know it's fairly early to say this but...I'm trying to be CAUTIOUSLY optimistic! His tics have slowed to a crawl!!! Though it could be a very, very odd coincidence, I doubt it. It's been years since I've seen my son's face not contorted in a grimace from the blinking or wanted to scream from the NON stop verbal tics! I've become a pro though these last two years and know that I will not count my chickens til they've hatched. Meaning that I will wait it out before getting excited, see if there are side effects or if he adjusts as he always seems to do to new medication, especially when it's shown promise!

Second sign: I've gotten soo many responses from mothers with HOH or deaf children! DW has been invited to playdates, even picnics! I've got an appointment with the Nebraska Commission for the Deaf and Hard of Hearing to get the process rolling to get the device that will flash the lights when the phone rings. My husband would love this immensely! So, will I!! The lady there has already started looking for family ASL classes, though most likely I'll be the only one who can attend and will have to teach DW and his father! : ) We've been given a number or two to help with both funding to get my husband's cochlear implant for his one ear and two places to talk to about getting him hearing aids that are more suited for his kind of deafness!

Third sign: DW has SPD and is highly resistant to new textures or feelings. The thought of needing a hearing aid and having to have two, REALLY bothered him!! I've shown him numerous videos of kiddos getting aids, pictures of what his aids might look like. I called the audiologist lady so that he could be assured that his aid would not be white, as he's an aversion to white. Today he started talking about when he has his hearing aids this and that and if something is too loud how he's going to shut his ears off! lol When is he going to get them, etc. It was really a good thing to see. Now if he'll stay this way, is beyond me but, for today, it's a good sign.