Re: guilt about not wanting third child to have LD but medical instead.

[Guest guest]

Heidi,

No, you are not the only one. My son was born with a cleft palate as

part of Pierre Robin Sequence (PRS -- recessed lower jaw, tongue in

airway as a newborn). We were very lucky that he also has a tied

tongue in that this kept his tongue out of the airway for the most

part. He has had chronic croup (9 times!) in the past year and

needed 11 rounds of Orapred plus a week of Xopenex with a nebulizer.

My son also has ear tubes which have been blocked part of the time.

He has passed most behavioral hearing tests when the tubes are clear,

but someone on my Pierre Robin email list has a son who passed 4

behavioral tests but still had like a 50% loss in both ears (as per

an ABR test). After hearing that, I started to wonder if my son

(Evan, 26 mo) might be fooling his audiologist too. Well, I don't

really think he is...I think he has a receptive language problem and

probably either PDD and/or apraxia. I keep hoping that it is only a

delay or that it is a hearing problem (like you, I figure that would

be easily fixed). I even almost sometimes wonder if it is a seizure

disorder (again, somewhat controllable with meds). I'm not sure

which I'd rather it be between apraxia and PDD, but sometimes I

almost wish that I could have exchanged dealing with a feeding tube

or even a trach for the issues he having now. Although he doesn't

talk at all, he does make some sounds. He has about 20 signs now,

and his receptive language and play skills are improving. Since

starting fish oil, he will now look at least if we say " hi Evan "

(maybe not if we just say " Evan " ), but his pointing and showing us

things is still somewhat limited. I am pretty sure that with the

right kind of therapy and some supplements, we can get through this.

However, the uncertainty of it all is what gets to me. I think

sometimes that if I had had to deal with the medical stuff when he

was an infant (beyond just an apnea monitor due to one " blue episode "

and some desats while he was in the NICU) that, at least that would

be over...but the developmental/speech stuff is likely to linger for

a while.

If any of the moms on my Pierre Robin group could see what I'm

writing (actually one of them just joined this group) they would

probably be shocked that I'd even think it would be easier to deal

with the medical stuff. And, realistically, the more medical

problems a child has, the more developmental problems they're

probably likely to have too. I KNOW that my thinking about this is

absurd (I KNOW IT), but when my son was born with a cleft palate, I

thought " well, he'll get it fixed when he's a year or so, he'll have

a little speech therapy to clean up any hypernasality, and that will

be the end of his problems. " When I couldn't breastfeed my son due

to his cleft, I thought that was going to be the most stressful issue

for us (I had *really* wanted to), but I don't think it even compares

to this. I think that it's just psychologically harder to face that

your child might have a disorder that you can't just give him/her

medicine or a mechanical aid for.

I hope this makes sense, and that I don't offend anybody...it's

certainly not my intent if I do. I guess I just wish there could be

some " quick fix " for my son's speech/language delay.

Anyway, just know that you're not alone in your feelings.

Laurel, mom to Evan (26 mo, PRS, cleft palate and hernia repaired,

2nd set of tubes, non-verbal [with 20 signs] and receptive language

delayed for an undx'd reason) and (6 yo)

[Guest guest]

Dear Heidi and Laurel,

Heidi, I just wanted to ditto Laurel's reply to your post. I feel the very same

way as both of you (and I trust other people grapple with the same issues). It

just breaks my heart that my son, Cole (age 2yrs, oral and verbal apraxia, also

born with an isolated cleft palate but with Pierre Robin ruled out (though that

is subjective, I'm told), can't be " fixed " so easily and may never be. I guess

its a " grass is greener on the other side " type of a thing as I frequently

wonder which diagnosis I would rather have for him, apraxia vs. PDD-NOS,

although when I do start to think this way I am forced to come back to the

irrelevancy of that contemplation. I find myself also trying to tame my

paranoia. I keep wondering what else is going to come up with Cole and what the

future holds for him. It is definately an excercise in self-control (easier said

than done though), especially as Cole now has a new almost two week old brother

and I am constantly looking at him trying to see if I see any

signs something may be wrong with him too. I could go on. But please know that

you are not alone in your feelings and that you (and I) have found great support

in this website.

Best Wishes,

Anita (mom to Alanna 8 (okay), a (6) (okay), Cole 2 yrs, verbal and oral

apraxia, and Kent 12 days(and I hope, okay).

heidi_mom_to3 <heidi_mom_to3@...> wrote:

Yesterday had her hearing tested at Easter seals. She didn't

respond to the Low Tones. is 21 months and came down with a

fever last night, due to a Bladder infection. So she just may not

have wanted to participate. She will be tested again next month.

has kidney reflux, a disorder she was born with. The ears and

the kidneys are formed at the same time in the womb.

shows a few things that could be apraxic based, but could just

be me making myself crazy.

I found myself thinking yesterday " HEY, a hearing loss, we get her a

hearing aid and boom our problems are over " . I know it isn't that

easy; my sister has a niece-In-law that has the copular implant (sp?).

I would love to just fool myself into thinking we could have a quick

fix to her delayed speech. I also know that even if she has a

hearing issue that she could still have apraxia like her brother.

Today I am worried she may have both hearing loss and apraxia.

Am I the only one has ever thought this??

Thanks

Heidi – SAHM to 8 (NT), 5 (DSI, Apraxia) 21

months (Kidney reflux, torticollis/plagiocephaly, late talker)

[Guest guest]

Laurel

Hang in there, my son at 26 months had no words at all & he only has oral &

verbal apraxia, VPI, and a few other mild issues. He did not say his first

word approximation until just after his 3rd birthday. My now 19 year old

that was dysfluent also did not say his first word until after his 3rd

birthday. Are you giving him ProEFA? Do you see any small gains with that

if so? We started at 3 1/2 on Pro EFA & began to see new things

everyday from about 3 1/2 weeks into it. I remember how hard it was in the

beginning. I felt it was hopeless as stated on page 114 of the Late Talker

book. I just can't believe how has improved since those early days.

The joy you feel the first time they tell you I love you is overwhelming.

Parents of normal developing children can't imagine how good we have it, our

little blessings!! has taught me how wonderful all these little things

are!!

Tammy I. in Fl mom to 5 /2 apraxic, 7 1/2, 19 & 22

From: " & Laurel " <themartones@...>

Reply-

Subject: [ ] Re: guilt about not wanting third child to

have LD but medical instead.

Date: Tue, 20 Jan 2004 22:37:38 -0000

_________________________________________________________________

High-speed users—be more efficient online with the new MSN Premium Internet

Software. http://join.msn.com/?pgmarket=en-us & page=byoa/prem & ST=1

[Guest guest]

Hi Heidi!

My nephew has a mild hearing loss, both ears, from frequent ear infections, and

he needs to wear hearing aids and he has a mild speech impairment,

not apraxia. Since they are part of the family visiting from up

North and I assure you that having fun at Universal Studios, or

playing on the boat, or running on the beach, or living in the pool

till we could drag them all out, or watching dolphins jump from the

water, my nephew, who is now in first grade, is as " normal " a little

boy as any other...except...he's probably a bit cuter.

Both Tanner and his cousin attended Summit Speech School(as their " out of

district

placement " covered by both of our town schools -and we lived in

different towns) I was told by the awesome Kanter from the

Summit Speech School in New Providence, NJ

http://www.oraldeafed.org/schools/summit/ that it's not uncommon for

a child to have both a hearing loss, even to the more severe extent

that they require cochlear implants, and apraxia.

One of the more active parents in this group who has a child that

had a hearing loss in both ears and apraxia is Lori DeForest's son.

Apparently since she doesn't post at all anymore, and last I heard

he was doing great, her son is still doing fine. You could check the

archives for her past messages.

It's OK to feel sorry for yourself or your child at times -and it's

also OK to laugh about it too at times. So on that note -here is a joke I

heard a child say at a talent show at the Club Med near me that

pokes fun at the way a child speaks.

" A man broke out of prison and tunneled his way through the ground

and came up in a playground sandbox and screamed " I'm free!, I'm

free! " a little boy sitting in the sand box looked up at him and

said " So what? I'm four. "

One other thing I wish of course I knew prior to now was how

important it is for us to take EFA oils while pregnant -especially

since we can't always trust the fish we consume is mercury free

today. Just like we take folic acid to prevent birth defects -you

watch -going ahead -parents will take EFAs to prevent apraxia and

similar multifaceted communication impairments. I'm almost positive

of that -and my hunches almost always are right. So laugh at you

want at anything I wrote here -as long as you laugh it's a good

thing. Laughter is so healthy too.

(And if normal means majority -then speech impairments are 'almost' normal today

-and if we don't find out why -they will be.)

=====

[Guest guest]

I understand exactly how you feel and don't feel guilty about it. My

son Randy was tested for hearing loss first because he was not

speaking (except 'aye' for 'hi' and 'bye'). It was a 'relief' to see

at his original AOE test showed he had a hearing impairment, because

that would explain everything. His ABR ended up showing on a mild-

moderate hearing loss, and not enough to cause this severe of a

speech delay.

At this point, he is in speech therapy, DT, OT and Aural Rehab.

Luckily he is making some progress even though it is coming slowly.

He is making several sounds and a few words he couldn't before. He

also can sign over 60 words. Sometimes I wish his hearing impairment

was worse because that could explain his speech delay. Then he could

get hearing aids and learn to talk quickly then.

So anyway, with his type of hearing impairment, normally it is not

diagnosed at this age. The only sound he can't hear are S,F,K & TH,

which are not normally sounds a child says at 2yo. But the

frustration is there as to why he is not talking. The theories are

floating out there: his behavior problems, apraxia, lack of

adjustment to his hearing impairment...

Please just take one day at a time. That is how we get through this

problem and we have joy at each word he says or signs. Good Luck.

Sange,

mom to Holly 3 1/2 (OK), Randy 2 1/2yo (mild-

mod hearing loss, speech delay, sensory problems) & baby #3 EDD 9/3/04