Been a while

It has been a while since I have updated. Nothing going on here besides day to day life. Aidan is doing great, talks a lot, makes his wants/needs heard in any way that he can. Is really enjoying school on the days that he goes(3 days a week)and is getting very excited for Santa Clause and Christmas. Aidan recently sang with school at the downtown gathering that kicks off the season. He got to sing Jingle Bells and is still singing it "jingle bells, jingle bells, hey!"

A few pictures

This is the picture of Aidan that I full intended to use on our Christmas card. However, I have yet to make them and don't believe I will get to them. That is the life of a busy mom of 3 children.


Aidan and his teacher and a few classmates singing Jingle Bells, Aidan is in the middle

Genetic testing is back

We got the results several days back but I am just getting around to writing about it. Darn those pesky 3 children taking all of my time ;)

Aidan was diagnosed as having 2 different mutations on the OTOF gene, at least I think it is called that gene. I may be wrong. Anyway, he has OTOF(otoferlin) related deafness. When he has children, he will pass it along and no matter what, he children will be carriers. If the person he has children with also is a carrier, then there is a 25% chance the child will be born with hearing loss, 100% chance they will be a carrier. It is not high probability at all, but if it so happens that he has children with someone with hearing loss due to OTOF, then there is of course a 100% chance that each child would be born with hearing loss. Now, if he has children with someone and they have hearing loss for a different genetic reason, then I believe that those children would be carriers for both genetic issues, but I THINK that they are all recessive so it should be fine.

We also found out that Edward and I have a 25% chance each pregnancy to have a child with hearing loss. This hearing loss will always be present at birth and will always be in the severe to profound range. This doesn't affect our decision for more children. We do plan to have 1(maybe 2 more) in 3-4 more years after I go back to school for yet another degree and once we move into a bigger home as we are still in the home I bought when I was 19 and single in college. Anyway, that is the genetic results in a nutshell, I'm sure there is a lot more information I could add, but it gets rather boring.

Aidan started school

This week is Aidan's first full week of school. He seems to be enjoying it so far. The teacher is letting him come 3 days a week, so he is there Mon, Wed, and Fri from 745-220. From what I have seen of the other kids(and I have only seen 3 of them) things are ok. My worries have eased and I expect this to be a great school year for him.
I have to wake him at 630 every day and it has been a little rough on him, but hopefully he will get used to it soon.

First day of school:

Aidan "reading" to Andrew

Aidan's 3 yr checkup

Aidan saw the pediatrician today and that went very well. He was 37" tall and 33 pounds. She was happy with his progress, with the fact that he is nearly potty trained, still not pooping on the potty, but going well so far. He got 4 shots, which he did not care for at all.

He also saw the eye dr again yesterday and luckily she said no glasses yet. She did mention doing some therapy to strengthen his eyes, which I think we will just get them to show me what to do and I can do it at home, if possible. Don't think we can add even one more thing to our schedule. All in all, he's doing very well.

He understands me!

The last few weeks I have noticed that I have been getting less and less "what the heck?" looks from Aidan.
I tell him:
"get your shoes" and he does it
"turn the tv off" and he does it
"do you want icecream?" and he answers me
"stand by the door" and he does it.

I could easily go on and on but I think about 90-95% of all things I tell him, he understands. Now, all of this is familiar, everyday language that we use in our home as well as when we are out and about.

New language he seems to be picking up easily as well. Still working on him asking questions and initiating conversation. Consonants are still hard for him-he is still at the same ones, b, d, h, w, m in the initial position and then he can also get r, n, p, t in the medial position. He has managed to get an f sound in the initial position a few times but it is rare.

He seems to be in a screaming mood lately, which is especially grating as his voice is inredibly shrill. So we have been working on him requesting help when he needs it instead of screaming for attention. He also screams whenhis brothers are messing with him, like sitting on him or taking away his toys. Working on him verbalizing what he wants, as in "give that back", "get off me" etc.

Our Final Decision Regarding School

This decision has been heavy on our minds for months. We would make a decision and then change our minds b/c it didn't feel right.

As of now, Aidan is going to go to public school 2 days a week-hopefully Mon and Fri from 8-220. Tue, Wed, and Thurs he will be home with me. We are going to put Andrew in Mom's Day Out Tue, Wed, and Thurs so that Aidan will get some quality alone time with me and I can teach him better without Andrew here. And then Andrew will get the alone time with me when Aidan is at school. Works out perfectly!

The only issue is that the public preschool he will be in is a self contained class-only special needs kids, several autistic and then some other children that I am not sure what their issues are. Hoping he doesn't pick up any behaviors. As long as we see him progressing in the environment and excelling with not too many issues, then we will continue. Otherwise we will pull him out and he can stay with me full time.

I have thought about him needing time with neurotypical children, not just the atypical kids. But he will have his brothers, his cousins he sees a few times a month and then since I will only have 1 kid with me at a time, we will do story time at the library and maybe the mom's group.

"Oh my God"

This is Aidan's newest phrase. I know it isn't PC or anything, but I can't help but love it! And as you notice, his little brother picked it up too.

Aidan's language sample

Thought I would get a quick sample of a sample of Aidan's language. We were working on B sounds that day.

Aidans school evalutation, official report

We received it in the mail today and it outlines how Aidan scored on different sections of the DAYC test.

-Physical Development-Scored at 37%, age equivilant of 30 months.
-Cognitive-passed all skills in the 24 mth age range, scattered skills in the 26 mth age range. Scored at 16%, age equivalent at 26 months.
-Communication-passed 73% of skills presented in 24 mth age range. Unable to understand possessives, carry out 2 step unrelated commands, understand big ane little, produce intelligible speech utterances, or consistently combine 2 or more words in speech(he does this with me a lot though). Scored at 6% or age equivalent of 21 months.
-Social-emotional-passed all skills in the 24 mth age range with the exception of enjoying simple make believe and saying please/thank you(which he does do a lot now). Scattered skills in the 36 mth range. Scored at 14%, age equivalent of 23 months.
-Adaptive Behaviour-Passed all skills in the 24 mth range. Ini the 26 mth age range he does not manipulate large buttons/snaps or tell someone about toileting needs. Score wa
s 37%, age equivalent of 31 months.

Overall he scored 85 on a scale of 115


Reading through the IEP, I love what they have decided as his goals. They are consistent with what we are trying to work on. They have him receiving preferential seating, meaning as close to the teacher as possible as well as use of an FM is needed, which we do not plan to use in preschool since it is a small class size and lots of circle time type of activities. Not sure how much speech a week they are offering at this time, will probably find that out at the IEP conference.

However, at this time, we are not 100% sure we are sending him to school. The evaluation coordinator thinks that this is NOT the best placement for him. She has evaluated most of the other kids that will be in the class and thinks that he will not be able to get the peer models for language here b/c of the other children's severity of delays. If he does go it will probably be 2 days a week. I'm currently looking into a church preschool that is 830-12, 4 days a week and then the school can send speech therapists out to work with him. Once we talk the everyone at the IEP conference, we may have a better feeling for the school and decide to send him. Or we may not.

Now, regarding the tests-he seems to be right on track for his language. He was activated(right ear only) in September 2008, so he is 21 mths hearing now. So that seems good to me that his hearing is right on target with his language development.

Great strides

Aidan amazes me everyday with what he is able to say. He is doing many 2-3 word phrases but they need quite a bit of work to get him understood by others that don't know him.

Apparantly that "b" that I thought was lost is not really lost. It came back the same day I posted about it being gone. Yea, he showed me!

We had the school meeting and they did an evaluation on him, which he ranked 77 and the cutoff is 77.5, so he barely qualified! I don't remember exactly what his scores were but if I remember correctly, his language was right on target(or close to) his hearing age, which is 21 months(for the right ear).

2 semi recent videos:

Met Aidan's new audiologist

We no longer have to go to New Orleans(6 hour drive) for audiology appts! We are now driving to Shreveport, only an hour away. The audiologist was very nice and was happy with how much Aidan was talking, said he was doing wonderfully! He was put in the booth and responded as low as 20 decibels with both ears on, 25 decibels with just the right ear(his first implanted ear), and 35 decibels with just the left ear. He got his left ear remapped and we left the right ear alone. However they noticed something is up with 2 electrodes on the right side during the NRT(neural response telemetry). Basically during the NRT an electrical signal is sent to the electrode(the internal part of the implant) and the activity of the hearing fibers are recorded onto the computer.

Not sure exactly what is going on, but we go back in July and will see a Cochlear rep that will be there so we can figure out what it is. It's possible it is nothing but it could also be a bony growth there preventing it from stimulating the nerve. If that is the case then they will turn off that electrode and add that specific frequency to another electrode, so he will not lose any hearing that he has.

Aidan is now in Mom's Day Out

We have signed Aidan up for Mom's Day Out at a local church so that he can get a little bit of interaction with other children and adults, and so I can get a break. It's exhausting being "on" all of the time for him, but well worth it!

I finally got him to wear the earmolds that I had fitted for him. They certainly help keep the implants on his head and we have even gotten rid of the babyworn setup!


We go for his genetic evaluation on May 13th, just 3 weeks away!

In language news, he is coming along very well. He managed to get the "s" sound--he actually said "ice", "rass" for grass, and "airplanes", it was awesome! He doesn't do it all the time with every word, but he will do it sometimes. It also appears that we have lost the "b" and "d" sounds. I've noticed a few weeks back that he rarely says those sounds. We had them in the form of dada and baba and were working on getting them for other words, like ball, dog, etc which he had managed to do a few times. However, I guess we focused on something else--who knows what exactly it was as I try to put a specific focus on some part of speech/letter sound each week and then work on the other things as well but not as hard. Anyway, I guess in focusing on these other parts, I forgot to add the "d" and "b" back in and now he won't/can't say them. Going to focus on that this week and see if he can get them back in there! My end goal is to try and get him to get "My Ball" so to get 2 different consonants in a phrase together. right now it is more "ma ahl" so I guess more of an approximation than it a correct word phrase. Hoping by the end of the summer he is more understandable by others as I understand most of what he says but his father as well as most others do not.

Aidan doing his letters(until he got distracted!)

Occupational therapy and sensory stuff

Aidan gets to see the occupational therapist once a month now. Kind of sucks since he was going to do 4 times a month, but since his issues aren't "severe" then it'll be ok.
He has been doing a bit better but is still not able to sit well without some form of support. When he sits in a chair he usually leans his back against it, when he sits in my lap-he uses me for support. When sitting on the floor he either "w" sits or uses hands for support. And so on. But he has learned 'criss cross applesauce' and 'big boy legs' and will immediately go to indian style sitting and does fairly well with that, although his knees are a tad high for extra support.

His occupational therapist gave us a "brush" to use on him for "brushing" to help with a few sensory issues--mainly the biting he is doing. This is used as a calming technique and I can do it with all 3 kids. And they all love it! Our oldest, Alex, does have a few very mild sensory issues, I have always known that, but it isn't something that really interferes with life so it's never been a big deal to us. She actually told me that she thinks I most likely have some as well--due to the fact that I do not like to eat many meats--like steak and chicken(and anything chewy). Who knows if she is on base or not, but I wouldn't be surprised. So we are trying that out and it is going fairly well.

The school situation

We have recently found out that Aidan will be in a self contained classroom for preschool this upcoming school year(Fall 2010). I have my concerns-mainly being that he will be in a class with only nonverbal/speech delayed children, whether it be children with autism, down syndrome, or a severe speech delay(like Aidan). I know the teachers at this school are wonderful as my oldest goes to the same school but is in the 4 yr old preschool program and in a regular class. But since he will only be with other children classified as special needs, I'm worried that he will not have any children to be a peer model for him, with regards to language. I know he would learn from teh teachers, but kids learn so much from other children and he may not have that. Of course, this concern is not fully validated b/c I do not know what kind of children will be in there next year. There very well could be children that will provide a good learning environment for him. I teeter back and forth on whether he should even be in a class with cognitively delayed children. Not that that is a big deal, but he is severely speech delayed, my goal is to have him hopefully caught up by kindergarten, and I really need to focus on him being around good language models, as well as behavior models. Aidan imitates behavior very easily-whether good or bad, so I also do not want him acting out even more as he already has a tendency to be a "bully" b/c of the lack of language.

We are having our transition meeting on the 15th and we will meet a few people and they will get to meet Aidan. After that I am going to ask if we can observe the classroom so we can actually see what goes on in the class and if this will be where we want him. I am also going to ask(or beg!) them to let us bring Aidan in to see how well he interacts with the other children. I can watch the other children alone and form and opinion, but I think seeing him in that environment will really help us decide on this. If it seems like it will work out, that's awesome! And it will truly lift a weight off my shoulders.
But if it doesn't, I really do not know what we will do. There is the possibility, albeit a slim one, that we may be able to get the school system to pay for him to attend another local preschool--montessori program or the church preschool, that would be with neurotypical children instead of a specialized "special needs class." That is a very slim chance of that happening though. I'd like to be able to get him into the Montesssori program or even the local university's learning center but there is no way we can swing the tuition. I know one of the church preschools is aorund 350$, not sure about montessori, but there is no way. We do not have any disposable income right now and won't until our bills are paid off---we can't add several thousand more dollars of debt, not possible. So, fingers are crossed that maybe the school will pay for this(if needed of course!) or maybe there is a grant out there that could help cover it. We will hopefully find out more in a few more months.


Oh and one other thing--Aidan had his eyes check--and he is farsighted, he will more than likely have glasses by the end of the summer. Also, when I took Alex and Andrew for their eye checkups a few days ago, I was told they were also farsighted but had perfect 20/20 vision. But she told me that Aidan was farsighted and did NOT have perfect 20/20 vision. Now, I'm not 100% sure what this means, but I know it means he will need glasses for the farsightedness, but also probably will need them as well for the non perfect vision, so maybe he will end up being nearsighted? I'll find out in 4 mths when we go for his next checkup.

February/March

So glad we are heading into Spring! We have some beautiful weather, although a bit rainy, but the kids are loving being able to get outside more and it gives more opportunities for some more informal speech opportunities.

What we have been working on:
-Aidan has learned most of the basic shapes-triangle, oval, circle, square, star, heart, and rectangle. Have started more complicated shapes--although not very much as we really need to get a puzzle with these shapes--he loves doing his puzzles!
-Numbers-he is understanding the concept of numbers and will count out all kinds of things. Most of the time he can recognize the numbers 1-5 and they do not have to be in order, so it isn't just from memorizing that it is 1, 2, 3, 4 and then 5. I think he also knows a few others up to 10, but it is inconsistent. He will repeat any number after I say it, still doesn't say it clearly, but once he gets more consonants, I think that will really help with others understanding him.
-Colors--we are working on teaching colors and he knows the different names of the colors and can match correctly 2-3 of them. Sometimes he can do 6 , sometimes not.
-Letters-He knows several letters--I know that he knows at least 10-15, but he usually gets bored by the time we get through about 12-15 of them so it is hard to guage if he knows more or not.
-Possession--we are working on this. We've been focusing hard on this--for example "this is Aidan's shoe, this is mommy's shoe" and other similar things. He seems to have this down fairly well and we are now adding in "yours and mine" I think he has "mine" down he just forgets to use it :)
-Adjectives--we have been working on this for a while, but he seems to have trouble with this. Big, little, short, tall, etc. ALthough I do forget to work on this quite often, so he may pick it up if I put some intense focus on it for the next 2-3 weeks. I am rushing to catch him up. I know where other kids his age are, I know what he is lacking so I am in a big rush to get him closing that gap as quickly as possible. And in that rush I forget to some of the simpler things---for example--big and small, yet he is learning numbers, letters, and some colors. We will get there :)

-Some things we are focusing on right now--more complex tasks-usually we are doing single instructions-"feed the cow" when playing with farm animals. Now we are moving on to "give the apple to the cow" It's hard for him b/c he does tend to focus on the last word that was said, so we really need to work on his auditory memory. We are also starting to work on "yes/no" questions--for example, when looking at a book, asking him "is the cow wearing a hat?" "no he isn't wearing a hat" and then "is the horse wearing a hat?" "Yes the horse is wearing a hat" and similar things. I figured "yes/no" questions meant getting him to answer yes to things he wants, which in a way, it can, but it also gets him thinking further.

It's hard to know where he is regarding "thinking" as his expressive language is very simple, so he can't tell me about his day, what he had for lunch, where he would like to go, what he would like to eat, etc so we are working on getting him to express everything. I have the habit of getting him what he needs without him having to ask, so my task is to make it harder for him to get what he wants/needs, force him to ask for it. And I know this, but mommy mode comes into play and I forget/it makes my life easier to do it, so that's what I stick with. Working on breaking that habit though!


His attitude---most people don't realize how difficult Aidan can be, besides Edward and I, as well as my sister, Katie. He is usually shy around other people or much calmer. However he is starting to show his true self to his speech therapist, which can be challenging at times as he is usually such a people pleaser whereas right now, he could care less! Aidan is incredibly strong willed, which can be extremely frusturating, but I do know it will be good when he is older. It has taken me quite a while to learn how to "manage" him. At times I feel he is running the house with his temperament, but I am trying to get into the mindset that he isn't running the house, "I am just giving him what he needs to grow the way he needs to." Doesn't make it easier most times, but it helps me not lose patience with him. He must do everything himself, if you do something a particular way that he doesn't like, he will have a massive fit, so I've often felt like I've catered to him to avoid those tantrums, but the last week or so, I've been careful to "keep him happy" for the most part, and you know what? He has been a lot happier, he is just a child that needs that kind of control, and I think that's ok. I of course do not let him get his way all the time--there are definitely limits with regards to safety(running in the parking lot!), but more often than not, I've been asking myself "why am I saying no?" and if there isn't a good answer, then I do not fight his need for that control.

Aidan knows his shapes

Aidan seems to have learned 5 of his shapes: Circle, square, rectangle, triangle, and oval. Looks like we need to get a more complicated puzzle(if they make one) for him to work with. We actually have some flash cards with shapes and I do believe they have the other shapes but he loves working with puzzles/hands on things like that, he learns it a lot quicker.

Genetic testing and vision test

Aidan has been referred for genetic testing and we are scheduled for a genetic evaluation on May 13th. From what I understand they will take a history and get all of his information from the other doctors before this appt and then will decide if they think he should have it done. I'm fairly positive that they will do it. We still do not know if insurance will pay for it. I called our insurance company and they need the codes of the tests first and then they can tell me. However I really don't think the genetician(is that what they are?) would be willing to give me the codes, she was quite nasty on the phone when I called last time for some information. So I guess we will get in the thick of it and then find out if insurance will cover it. We will definitely find out before we start the tests as they are very expensive--we are looking at anywhere from 1800-7000 depending on which tests they decide to do.

In my quest to find out some information on genetic abnormalities that cause hearing loss, I decided to also look up any disorders/syndromes that also have hearing loss as a symptom. None of them fit except possibly Usher Syndrome. It is characterized by severe to profound deafness occuring at birth or shortly after(Have that) and a progressive loss of vision. The loss of vision can happen in the first couple of years or it can take several years before it starts. So I freaked and made an appt to have his eyes checked.

Aidan is farsighted in both eyes, one eye was +2.0 and the other was +1.75. I believe this is mild farsightedness. Since a lot of babies are born farsighted and it gets better over the first several months, we aren't sure if this is leftover from that and it is still getting better or if it is getting worse, or the same. If I had had his eyes checked at 6 mths, then we would have a better picture. But no, we were too busy with the ear problems. He will be checked again in August and if it is the same or worse then it probably isn't getting better and we will most likely do glasses. Not sure how we will get glasses AND his implants on but I'm sure we will figure that all out when the time comes.

Oh and the Dr saw no sign of the retinitis pigmentosa(the thing that causes the progressive vision loss) but she did say that that doesn't mean he doesn't have it, we need to do routine checks(every 6 mths) to make sure it doesn't develop. I do believe that if the genetic testing rules it out then we won't have to check so often.

Aidan counting to 5

Aidan amazes me everyday with what he knows. Out of the blue he will say something that I didn't "teach" him and he just picked it up. It is cool when those moments happen as it can be a little harder for kids like Aidan to learn incidental language. This is a video of Aidan counting to 5, using his book that has a number on each page and a picture on the opposite page. I got it for him for Christmas and we have looked at it maybe 1-2 times a week. We tend to count objects quite a bit but he sees the actual numbers less frequently, maybe 1-2x a week. I was shocked and amazed when he picked up the book and said each number on the page.

2+ words

Aidan is progressing from single words to 2+ words together. He told me to "be quiet" and covered my mouth the other day while I was singing the ABCs. Of course it was said more like 'ee why eh" We have also been working on 'I love you'. He doesn't know what it means but I am trying to teach him. He has said twice "I uh oo" right after me so hopefully one day he will get it. Some other ones are: Mommy Look, Alex school, no no Andrew, night night Andrew, and a few more that I can't think of at the moment. He has learned the word "mine" and uses it correctly most of the time. Does a ton of word approximations, imitates most anything for me, but not for others especially if he is being shy.

He has started Tech and that is going very well. He didn't say a word the first couple of visits but now he is a chatterbox and really enjoying it.

We are in the last 6 mths of speech through Early Intervention. Sometime in the next few months we will see someone from the school board? or maybe it is from the actual school Aidan will attend this coming Fall. But we will see her and she will evaluate Aidan to determine how often he will go to school-from my understanding it could be everyday but not sure if it is a full day, or it could be 2-3 days a week. It all depends on the the severity of the delay when he gets evaluated. Currently he is considered severely delayed. I am hoping that by the time August rolls around(when school starts I believe) that he will be at only a moderate delay.