dogmom

I have experienced much ignorance in general from people who seem to unable to look outside of themselves.

many people tend only want to see what they're comfortable with and understand....unfortunately, that's often very limited scope-

Deafness

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GrendelQ

Beautiful little guy! (and a lovely family)

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jillio

Because they do not have the experience or the training necessary to dx disorders such as this with a neurological basis.

Babyblue

Like me.. I was Dxed with autism until I was 5 years old. 5 years of my life wasted.

I would take little Frankie to a specialist.

sallylou

Thanks for sharing the photos! He's darling.

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frankiesmom

nope...its so damn strange..he cant eat solid food because he doesnt know how to chew..he cant play with toys in a purposeful way, like putting stuff in boxes, climbing on stuff, pretending stuff, or even pushing a baby doll stroller. he can pat at things and look at toys with lights..and thats about it. he cant feed himself because he cant get the spoon to his mouth, or even hold one..BUT he learned to walk and crawl right on schedule. it really makes no sense. he doesnt know how to imitate either..no waving, pointing, peekaboo, nothing. never have i seen a kid like this. the doctors all pretty much agree that the hearing loss is separate, and not the cause of his delays, which makes all of this suck that much worse. the early intervention lady has put off the goal of learning signs because he simply doesnt have the capacity right now.

frankiesmom

thats where we are going next week, luckily!
his mri was this morning..i dont know, none of it adds up to me..there HAS to be some reason he is like this, but finding it has proven harder than i thought.
the good news is that he is getting his hearing aids tomorrow, i believe..yay!!!!!

Babyblue

Yay for the hearing aids. He will not like them at first. Hearing all the new sounds that he is not used to. It will prove to be overstimulating at first.

I wish you the best on finding out. He is such a beautiful boy!

Sarfarigirl2011

awesome and I know some troubleshooting tips if the problem with the aids are techinal related

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

frankiesmom

thanks! i am pretty excited about it..i hope it helps him enjoy his life even a little more.

jillio

Those really are a confusing cluster of symptoms.

If he is watching things with lights intently, then I would keep using the sign with him. He is probably taking in more receptively than the EI woman thinks he is.

jillio

That will certainly be an adventure. Don't be surprised or discouraged if he doesn't like them right at first. Some kids need to be eased into them because the sudden increase in stimulation is too overwhelming for them.

shel90

As an educator, I strongly disagree with this.

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jillio

Thank you. I should have known that you would see this the same way I did!

Sarfarigirl2011

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

sallylou

Doctors always like consider hearing loss separate but I'm not convinced that hearing loss is it usually is a seperate issue. I have a genetic hearing loss disorder and doctors love to say that my symptoms are not connected. I suppose that I'm just a person with a cluster of unusual symptoms. lol I suspect that having no answer, this is just the best that the doctors can come up with.

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frankiesmom

believe it or not, i agree with the doctor on this one..he looks at lights, but..i dont know, its really hard to describe..its kind of how someone might zone out while listening to someone on the phone ramble on and on? hes looking at it, but hes not really taking it in. we have been trying to teach him to wave byebye and point for months and he still just doesnt understand. the only thing he gets REALLY serious about is me holding him..he clings to me like a not so small spider monkey!
the whole thing is just baffling though.

Beach girl

Is his vision ok? I wonder if he literally sees the lights better than he sees gestures, for instance.

jillio

I agree completely that it is baffling. But I would still be reluctant to say that he is not taking any of it in. It is really hard to determine what a child may be taking in from a peripheral perspective at the time. Much later, they will give a clue that they have perceived and processed some sort of stimuli that we never even knew they were paying attention to.

KristinaB

Sad to say, but reading a lot of this reminds me so much of what we were told about my daughter.

Basically we were told:
1. She's borderline autistic
2. She's blind
3. She's deaf
4. She's retarded
5. She will never walk
6. She will never tolerate solid food
7. She is unteachable
8. She should be institutionalized
9. She will never be able to care for herself.
10. She will forever hate you due to her speech & language delays.
She was listed with 32 different developmental disorders and disabilities when she was 2 and 3. She failed all vision tests up to the age of 5. She had hearing aids from ages 5-8 before we found they did not help. She did not talk with a 75% understand-ability until she was 10. She did not learn to read until 9 and then only with the help of closed captioning on her favorite videos or TV shows.

Well, as I mentioned before, She proved them all wrong. Yes, she has delays and she has learning disabilities, but more than anything, we focus on what she can do, not what she can't.

Now, I do realize there are a lot of children who have it a lot worse than she did and I am not discounting that. However, I totally feel the frankiesmom is doing a wonderful job and approaching this the right way.

I totally applaud all dedicated parents who work hard for their children and I really and totally applaud and high five those dedicated teachers who are able to help these children grow even if only a little bit. My daughter was in the public school system for a short time and she has a speech therapist, a school nurse and a few teachers who made her feel like she was worth something. She was cut down and demoralized completely by teachers, principals and therapists (occupational and and physical).

frankiesmom

luckily, they havent been that negative..which is why we have tons of people coming out to try and help him!
but really though..i just hope we get answers..i hate the not knowing.

GrendelQ

I agree that frankiesmom is doing a wonderful job. But you are a pretty amazing mom, too, I sure hope you know!

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jillio

Agree with you 200%. And knowing some of the things you have faced in order to be sure your chilfren's needs were met, I would say that you are one in a million, too.

deafdyke

frankiesmom, what I meant is that there may be an underlying "something else" besides the hearing loss that could be resposible for his delays. There's also possibilty that it might be a genetic thing, that might be able to be treated. When you go and see the developmental pediatrican demand things like a karotype etc.
Oh, and while he may be delayed or have issues, remember there's still a lot of possibilties for him.

frankiesmom

a karotype, you say? i will bring that up. they are leaning towards genetic problems but how would i have 6 other kids that are normal? who can say really..its all so confusing. but yes, he has lots of possibilities..i am working with him so much and he has picked up a couple new things recently, so i am a little hopeful!

deafdyke

frankiesmom, genetic doesn't always mean familial. I have a denovo genetic disorder. I am the only one in my family that has it. Definitly request a karyotype. I know that docs are taught that things like chromosome disordered kids are usually the stereotypical severe/profound kids who are deaf/blind with feeding tubes, trachs and ten godzillion other medical problems. Not quite. They're finding out that there are a lot of people out there with chromosome abnormalites that fit a whole spectrum, from mild LD/CP or just hoh and every and anything in between.

frankiesmom

i am going to ask then..thanks for the advice! but...please tell me what a karyotype is!!

Bottesini

Make a Karyotype

You can learn a lot this way.

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Beach girl

Lots of reasons. In the first place, every child gets a random assortment of the parents' genes. A family might have one blue-eyed child and one brown-eyed child, for instance, if the brown-eyed parents each carry a recessive gene for blue eyes, and those recessive genes match up in one child but not in another. Maybe you and your husband had some recessive genes that just matched up with Frankie, but didn't pair up with your other children.

Another reason could be the age of the parents, and especially of the mother. It is more common to have abnormalities as the mother's age increases and her eggs aren't as healthy as they used to be. There is some correlation of increased birth defects with increased paternal age also. Obviously both you and your husband were several years older when you conceived Frankie than you were with your older children.

Or it could be just a random mutation.

There's no way to really know without running various genetic tests. How important is it to you to find the cause? Will it make a difference in treatment? A good geneticist can give you advice on that.

That is so great that he has picked up a few new things recently, and so great that you remain hopeful! To my eyes, having a spirit of hope and optimism in the face of difficulties goes a long, long way to overcoming whatever problems come up. Optimism can reinforce a fighting spirit, which you already have, and which no doubt will serve you in good stead as you fight for what is best in Frankie's life.

jillio

Depends on whether the condition would be of a recessive gene type and whether 2 copies of the flawed gene are necessary to transmit the condition. That will not occur in each and every pregnancy. It is a matter of statistical probability.