Any advice? Thanks in advance!

[Guest guest]

Hello group,

First time poster! This group seems to be a fountain of knowledge and

I'm hoping you can help me out with suggestions.

First of all, I've checked out the book and unfortunately the miracle

fish oil cure doesn't seem to be working for my little one =/

That said... I have a 2 year old son who was born with a number of

birth defects (most of which he is growing out of! Thank God!). His

father and I started divorcing when he was 5 months old. At the same

time, the poor kid went through a major surgery on his arm and was in

a cast for months to ensure proper healing of the muscles and tendons.

He started falling behind developmentally immediately. I feel that it

was because of his physical restrictions as well as the emotional

stress he was going through. Let's just say that the divorce has been

horrendous for both my son and myself.

He is currently seeing a Speech Therapist who has been very helpful

and supportive. She suggested he may have developmental apraxia of

speech. She suggested he also see an OT. The OT suggests " full body "

developmental apraxia. Christian is VERY intelligent, it just seems

that he can't connect what he wants to say from his brain to his mouth =/

I am trying so hard to stay cheerful and hopeful. However at this

time, he's about to go through another round of major surgery. The

other major problem is this: I have also tried my hardest to promote

Christian's father to him, despite what he's put me through. I've also

tried my hardest to include his father in more than just occasional

visits. Unfortunately, he is so overly defensive that he won't even

return the therapists calls, tells me that he doesn't need advice in

raising his child, and can't even repeat back what signs our son

knows. When Christian visits him I see a visible roll back in the

progress that his therapists and I try so hard to push. Heck, I went

back to school just to work on a degree in mild to moderate

developmental delays so I can better understand him.

So... first, thanks for listening to me vent. Second, any advice on

how to get his father more involved? The guy already has a new family

and children (don't get me started on that... we've been divorced for

2 months), and it seems like he just doesn't care about his first son.

However he wants that every other weekend visit and his opting out of

being a part of Christian's development is not helping. I know the

therapists can't MAKE him join in, but it's getting ridiculous. Any

advice on how to keep Christian's progress from slipping away?

[Guest guest]

You are doing a great job of keeping your chin up- but it's clear you

need support right now too. I have a number of emails below about

support -husbands in denial- but not sure which if any has advice

that will mean something to help you as I don't know enough about

your situation. May just be my opinion but why try to get your

husband to agree with the diagnosis or with going to therapy as it's

clear in your words he's moved on to a new family with new children

(in 2 months after your divorce?)

I'm not saying don't have him in Christian's life -of course he

should be- but it appears you are the primary care taker of Christian

right? Just let him know what you are doing and if he wants to take

part he will -and if not you'll be making sure that Christian has you

there. We have a number of single parents in this group who will

reach out to help you. One of them is Kathy who lost her husband in

a car accident when her apraxic twins were just 3 years old...and she

had 2 other young children as well!!! That was 7 years ago -Kathy

I'm sure would be happy to talk to you -or share with you here some

of what helped her in those early days.

About Christian's birth defects that he's overcoming -what are they?

what is the surgery that the poor little guy has to go through

again? He's so fortunate to have you. Give him a huge hug from

me!!!

What book did you read? The Late Talker?

Also what brand/formula/dosage of fish oil did you try? On another

note if Christian is only 2 years old it may be a bit young to

definitely diagnose verbal apraxia -unless it's oral apraxia. Most

diagnose as " suspected apraxia " and appropriate therapy should begin

just in case. And if apraxia is suspected Christian should be taken

to a neurodevelopmental pediatrician or pediatric neurologist to

confirm or rule out any " soft signs " . Don't get more worried most

are subtle things that he can overcome via therapy, Also perhaps the

eval from a neurologist will bring your ex around to respect the

diagnosis? Try to stay away from the word " developmental "

or " childhood " as they both to the lay person (and the insurance

company) imply that your child will outgrow his " apraxia " and yes in

most cases it's not limited to speech -that's par for the course for

most apraxics.

Below is a huge amount of support archives...I hope some of these

help and please get back to us with a bit more information for us to

help!

Here's an archive for dealing with your husband from 2001 -this comes

up quite often and it's not always a bad thing:

Re: In the midst of despair there is hope!/denial

Hi Dani,

About husband issues with your 26 month old...What I want to say is

hard to explain and being that I'm writing it-and not talking right

to you- I hope it comes out right and you can understand.

What we see as denial in our husbands can sometimes be positive as

long as both parents-mom and dad work together (if possible-of course

single parents don't have to worry about these types of issues!) For

example, when wrote that beautiful post the other day about

overcoming hardship and despair with the support of her husband at

her side keep in mind that she wrote that about 13 years after she

was in the same situation as you. I know and her wonderful

family, and just because " at some point " husbands are there as

support systems for you as well in the way you want them to be

doesn't mean that they are not there all along.

Stress in the marriage is not uncommon when there is a child with a

disability of any sort. I mean even if you leave a child alone with

your husband to run to the store and you come back to find an ice

pack on your child's head there may be a bit of craziness between the

two of you until communication has a chance to help the understanding

part get it's job done. With the balance of the two parents-it

appears that children are able get the best of both worlds-they get

the fatherly push -and the motherly nurturing-and then the fatherly

nurturing and the motherly push.

Parenting isn't always easy-especially when we find out about

something that affects our precious and helpless children's life -we

as parents feel responsible to pick them up, brush them off and fix

what's wrong. We want to say " Mommy's (Daddy's) here sweetheart " and

make " it " all better. But even before that we first need to be ready

to hear, believe and accept that there is something -no matter how

minor or great- " wrong " .

Your husband walked in to find you hugging your baby and crying. The

word " wrong " is not welcomed in the best possible situations, but it

helps if it comes from the professionals instead of us. Let him be

the one to " kick them out of the house " like he says. Or walk out of

the neurologist's office to find another opinion-and then another.

Not accepting right away a negative diagnosis is not a bad thing as

you will find out. I even found some links about this below you may

read..

And...After all-hypothetically he could be right. So why not " make

sure " and double and triple check and give it some time. Doesn't

mean the therapy can't start -just means that he doesn't have

to " accept it " yet. Not being ready to accept right away also

doesn't mean that he's not going to love and accept your child for

who they are and no matter where they end up. Lots of this I know.

You are not going to believe why-my husband was in denial too-but so

was I!!! When I was taking Tanner to therapy and worried about him

on one hand-in the back of my mind-I too believed that he would " just

start talking. " You know everyone has their age they accept. May be

three-may be five.

I understand there may be issues with outside of speech. I

understand that too. Your child is still young- I can tell you from

personal experience that even delays that are a combination of

physical and developmental challenges can be overcome-I know this

from my first born son Dakota-my miracle child. There is always

hope, which is the message that was trying to say. I hope I

said it OK. But if not-here are some links (and snips) that may help!

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html

" If you have recently learned that your child is developmentally

delayed or has a disability (which may or may not be completely

defined), this message may be for you. It is written from the

personal perspective of a parent who has shared this experience and

all that goes with it.

When parents learn about any difficulty or problem in their child's

development, this information comes as a tremendous blow. The day my

child was diagnosed as having a disability, I was devastated -- and

so confused that I recall little else about those first days other

than the heartbreak. Another parent described this event as a " black

sack " being pulled down over her head, blocking her ability to hear,

see, and think in normal ways. Another parent described the trauma

as " having a knife stuck " in her heart. Perhaps these descriptions

seem a bit dramatic, yet it has been my experience that they may not

sufficiently describe the many emotions that flood parents' minds and

hearts when they receive any bad news about their child.

Many things can be done to help yourself through this period of

trauma. That is what this paper is all about. In order to talk about

some of the good things that can happen to alleviate the anxiety, let

us first take a look at some of the reactions that occur...

Common Reactions

On learning that their child may have a disability, most parents

react in ways that have been shared by all parents before them who

have also been faced with this disappointment and with this enormous

challenge. One of the first reactions is that of denial -- " This

cannot be happening to me, to my child, to our family. " Denial

rapidly merges with anger, which may be directed toward the medical

personnel who were involved in providing the information about the

child's problem. Anger can also color communication between husband

and wife or with grandparents or significant others in the family.

Early on, it seems that the anger is so intense that it touches

almost anyone, because it is triggered by the feelings of grief and

inexplicable loss that one does not know how to explain or deal

with... "

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html

http://www.indiana.edu/~hperf558/periodic.html

" Time-bound models of grief and mourning

These have been developed by a number of people (Bowlby, 1980; Engel,

1961; Kubler- Ross, 1969; Lindeman, 1944), but a representative model

(Clubb, 1991) describes a linear and temporal sequence of:

*impact

-shock, anxiety and disorganisation.

-Is short lived.

*denial

-protest.

-Is a defence mechanism.

*grief

-anger, guilt, despair, sadness, blame.

*reorganisation

-focussing attention outwards.

*closure

-acceptance.

The central and important concept in this model is that

of " acceptance " , which is implicit in a healthy adjustment, the

corollary being that failure to " accept " is maladaptive, pathological

and requires intervention...

Discussion

There is an emerging body of literature which is questioning the

concept of denial as maladaptive, and is providing some alternative

interpretations. (1993) challenges the traditional view, and

suggests that " ...denial buffers the individual against what is

sometimes a bleak reality " . He cautions health professionals against

asking their clients to be " unrealistically realistic " , distinguishes

between acceptance and adaptation, and states that successful

adaptation is not dependent upon acceptance.

(1989) has contributed a large body of work which relates to

peoples' ability to benefit from tragedy. She questions the long-held

assumption that accurate perceptions of reality are a critical

component of mental health and challenges the established wisdom. Her

research indicates that normal human thought and perception is marked

by positive, self-enhancing illusions about the self, the world and

the future. These she calls " positive illusions " , and believes they

are instrumental in enabling people to overcome adversity in their

lives. Brown (1993) raises the question of these positive illusions

being merely defence mechanisms in disguise, but draws a distinction

based upon defence mechanisms being unconscious and involving

distortions of reality, whereas positive illusions are a cognitive

reinterpretation which are subject to control and revision and, as

such do not involve major distortions of reality, but rather involve

variations in how reality is interpreted or represented. They are

seen as strategies which enable people to feel better and function

more effectively. Counsins (1989) says that an optimistic outlook

does not necessarily equate with a denial of reality. He provides an

interpretation which is based upon an understanding of reality, but a

refusal to accept the implications which this reality suggests... "

http://www.indiana.edu/~hperf558/periodic.html

=====

[Guest guest]

Maybe you can appeal to your ex-husband's mother?

My youngest was born with birth defects on both hands. He had double

hand surgery at 18mos. I think it was called hyplastic syndactaly.

He had a finger missing and most of his fingers were buds. They were

each missing the third bone so they were short but had fingertips and

nails I had to trim! His doctors thought he had Streeter's Syndrome

(aka Amniotic Band Syndrome) and then Poland's Sequence but both were

ruled out. No one knows why both hands were affected.

His second Speech Language Pathologist felt he had Apraxia and

Dysarthria. I went to see a Pediatric Neurologist who said he had

Apraxia, Dysarthria, and Hypotonia (the latter in his arms, legs, and

tongue).

My son was not an immediate responder to fish oils but his

pediatrician recommends them so I give them to him once a day for

good overall health.

Best wishes,

Sincerely,

Debra, homeschooling mom of 4 ages 12, 10, 9, and 5 1/2

>

> Hello group,

> First time poster! This group seems to be a fountain of knowledge

and

> I'm hoping you can help me out with suggestions.

>

> First of all, I've checked out the book and unfortunately the

miracle

> fish oil cure doesn't seem to be working for my little one =/

> That said... I have a 2 year old son who was born with a number of

> birth defects (most of which he is growing out of! Thank God!). His

> father and I started divorcing when he was 5 months old. At the same

> time, the poor kid went through a major surgery on his arm and was

in

> a cast for months to ensure proper healing of the muscles and

tendons.

> He started falling behind developmentally immediately. I feel that

it

> was because of his physical restrictions as well as the emotional

> stress he was going through. Let's just say that the divorce has

been

> horrendous for both my son and myself.

>

> He is currently seeing a Speech Therapist who has been very helpful

> and supportive. She suggested he may have developmental apraxia of

> speech. She suggested he also see an OT. The OT suggests " full body "

> developmental apraxia. Christian is VERY intelligent, it just seems

> that he can't connect what he wants to say from his brain to his

mouth =/

>

> I am trying so hard to stay cheerful and hopeful. However at this

> time, he's about to go through another round of major surgery. The

> other major problem is this: I have also tried my hardest to promote

> Christian's father to him, despite what he's put me through. I've

also

> tried my hardest to include his father in more than just occasional

> visits. Unfortunately, he is so overly defensive that he won't even

> return the therapists calls, tells me that he doesn't need advice in

> raising his child, and can't even repeat back what signs our son

> knows. When Christian visits him I see a visible roll back in the

> progress that his therapists and I try so hard to push. Heck, I went

> back to school just to work on a degree in mild to moderate

> developmental delays so I can better understand him.

>

> So... first, thanks for listening to me vent. Second, any advice on

> how to get his father more involved? The guy already has a new

family

> and children (don't get me started on that... we've been divorced

for

> 2 months), and it seems like he just doesn't care about his first

son.

> However he wants that every other weekend visit and his opting out

of

> being a part of Christian's development is not helping. I know the

> therapists can't MAKE him join in, but it's getting ridiculous. Any

> advice on how to keep Christian's progress from slipping away?

>

[Guest guest]

Thank you for all the input and advice! I will definitely be picking

up The Biology of Belief and other recommended books. Yes, I read the

Late Talker. I figured it was written by someone in this group,

especially since it mentions this group in the book

No one has officially diagnosed Christian yet. Once he turns 3 he will

be seeing a child psychologist because of his poor reaction from

seeing his dad (but that's another story; he's currently seeing a

behavioral specialist through Help Me Grow), and more speech sessions.

He's never seen a neurologist although it has been suggested to me once.

Yes, I have sole custody. I would rather not get into the gory

details, but the short story is this: he was cheating. He was mad I

found out and kicked him out so he accused me of abusing our son. He

hadn't seen him in 14 days at the time, but the judge still believed

him and issued an ex parte order to have him taken away. I didn't know

anything about his shady actions until I had cops show up at my door

and say " we're here for the baby " . He was gone for 16 days (3 days

after a surgery, btw) and I was not allowed to contact him, his

father, his doctors, or anything else considered " harassment " . Long

story short, his docs who had just seen Christian testified for me and

(of course) it was dismissed. I am now legally in control 100%.

Christian also lives with me and I hope every day that he's happy here.

As for the birth defects... they didn't discover any of the problems

until he was born. Talk about a whammy. He has a complete urethral

duplication (they even did hormone testing on him since it was so

extreme), and he is currently going through a series of surgeries for

that. He has thankfully overcome both of his heart murmurs (an ASD and

VSD)! He had pretty bad GERD for awhile but it only seems to bother

him at night now. He had a lot of feeding and breathing issues that he

overcame. He's a trooper. I am very thankful that he didn't have

anything wrong neurologically. I am constantly impressed by his

maturity at such a young age.