I have a son who was born with health issues, or anomalies, or challenges, or birth defects - call it what you want, it means the same thing - life is hard for him, and that means it's hard for his dad and me, too, and his siblings. The family as a whole, it's hard for us, but you know what? We also get such rewards, such blessings, that some, do not know - imagine getting to see as a blessing, that which most would view as sad and difficult.....

I went with my son to the cardiac clinic, which shares a waiting-room with the chemotherapy clinic - the clinics are alphabetized at our children's hospital.

I met a mother whose 2year old daughter was on chemo because she had cancer, and this mother said to me - "it must be so awful to live with your child having heart defects, I don't know how you can stand it, I am so lucky."

I was sooo amazed! Because that's what I was thinking! Thank God my child only has heart defects, and not cancer!

Do you see why I think this is so lovely? She and I were both able to recognize the blessings we have, and see the difficulty of another mother and child, as worse off!

I remain amazed at the strength of the human spirit, and I am grateful to have the opportunities to know these things.

My son had his first open-heart surgery when he was about a year old. The same time as his, was the same time a young man of 18 years was having his first open-heart; he and his mother were from Guam - another country, another culture - and this mom and I talked, and learned that we were having the SAME nightmares!! Can you imagine? Different cultures, languages, and the same nightmares!!

There is a universalness to the human experience that, I think, I may never have known, had I not been blessed with this son, that lives in my highest hopes, and darkest fears, both, everyday.

The oddest thing happened, this week. The library here, received a new book, on Asperger's Syndrome - The Complete Guide to Asperger's Syndrome (Tony Attwood) - right when I need to start to educate myself about it, it is here and my girlfriends ( 3 of them!) who work at the library, called me to tell me about it. I don't believe in coicidence, and I am the first person to check-out this new book, that just managed to turn up in this tiny little town. Huh, imagine that.....


edited for sensitivity

This message has been edited. Last edited by: hrt2stone,

Oh sweety!
Thank you so much for starting this thread.
I am far too drained to post tonight

I will be back here as soon as Mommy-of-special-needs-baby possible

ooo
good news

Psych re-eval scheduled for May 11th

MAYBE now we can finally get that diagnosis?

Have you thought of SSI?

I am fairly positive I will apply, will get an advocate first to help me.

A question,
would anyone mind if D22 posts here as well? She is my co-pilot and very close to BabyBoy

love to you Hrt
and love to our precious babies

You know this is something I find so interesting too about the phenomenon...

One of my nephews.. he is autistic. Functionally so. He's witty, he's charming and he is a handful. He is 18 and my SIL is now working with a local school that teaches kids like him how to hold down a job, how to be independent. He works from home. My SIL works a full time job and must do so in order to keep their insurance.

My brother and my SIL have had their ups and downs. My brother has been diagnosed with a form of degenerative arthritis that though he can live for many years with, will eventually make it difficult for him to manage without help.

Through it all their marriage survives. With all their dysfunctions and all their problems. They probably have the strongest marriage of all of us. (I have 4 brothers). She says she would never leave the only family she has (her parents are both gone many years now and her brother lives in Australia). My brother says where would I go and who else would have me? And they both look at my nephew and say he needs us.

Funny how really that is what marriage is/should be about but many times takes certain trials to make that clearer.

Loui

Hypatia,

I don't mind at all if D22 posts here.

I am hoping this thread is a place where we can celebrate and cry the triumphs and pain and fear, together, that this journey is.

Good Morning All,
I just received and email from BabyBoy's father. He wants me to write for him an explanation of how BabyBoy's behaviors have changed since he last saw him at Xmas. BabyBoy is scheduled to visit his father this summer for 6 weeks.

My word, I have no idea where to begin.

BabyBoy has definitely changed dramatically in the last 5 months.

I am going to have to write it out, organize it in Word and then email his father.

It is a good thing i have written some here, I will have to go back and reread. I have so many documents I can go back and read as well.

It is amazing how one becomes accustomed to another person's changes overtime. I have been adapting left and right.

BabyBoy definitely requires more attention now. More interaction. More routine, requires more reassurances.

Now I realize what I am about to write may sound like a disrespectful judgment,, so...

BabyBoy's father is a self proclaimed conflict avoider. I am not sure and feel very uneasy about BabyBoy spending any amount of time w/ his father in X-h's world. His father typically has a wait out the issue attitude. As if he waits long enough, the problem goes away. X-H also typically lives his world for the moment w/ out allot of thought as to the long term implications. "Sh!t happens".... X-H is the typical Disney Dad, all fun at his house w/ less boundaries, he really does not want to be perceived as "the bad guy". It seemed when I was married to him that he sincerely felt as though it were all about him and the world revolved around him. X-h seems to harbor resentment toward anyone who shakes the walls of his bubble.

A special needs child cannot play that game especially if for some SE children, the world absolutely does revolve around themselves. Some SE children have no other way, have to be taught that there is a world and other people outside of them selves.

I am not happy. I feel as though I need to teach an adult that there is someone much more important than that adult. Some one who needs are huge and that there is very little room for the adult's wants and needs sometimes.

Last time BabyBoy visited his father for a mere ten days, it took me as well as his team month's to get back in BabyBoy's world. It has been predicted that BabyBoy will regress significantly over the summer , especially w/o ALL of the therapeutic work the adults in his life are doing w/ him.

I have suggested to x-h that he take 4 day weekends here and there and be a part of this world to be w/ BabyBoy. He will not entertain the idea.

X-H does have three weeks vacation coming to him this summer, it is do-able. I would put aside ALL of my stuff w/ x-h in order to have BabyBoy have a more positive visit w/ his father.

I gotta go for now, BabyBoy wants some oatmeal, hungry boy

xo
H

I have to admit that I am stressed about BabyBoy summer plans to visit his father. I am concerned for BabyBoy's over all well being.

It has NOTHING to do whether a parent of person loves a child. It has nothing to do with whether or not a parent is a good parent or a person is a good care provider IN NORMAL CIRCUMSTANCES.

These are NOT normal circumstances.

I know that many will think and/or say, "just let it go and have faith"....... It does not work that way w/ a special needs child.

There a billions of subtle nuances in BabyBoy's life that the entire teams is trying to figure out and we are adjusting continuously, all the while communicating w/ one another as best we can. Trying to convey all the details is impossible, we do our best to hit on the most important of details. But there is always one we miss that is of more importance. Then we adjust again.

BabyBoy's well being is in my every every thought, no matter what I am doing.

Children w/ similar situations take on average 40 hours of therapeutic interaction per week in order to gain any ground.

Hypatia,

Will there be things that will remain constant while he's gone? Therapy/counseling that sort of thing? Is there any outside resources you can contact to make sure that you remain in contact w/him while he's gone? I realize your exH will consider any interaction with you as a judgement on his parenting, but can there be a meeting maybe with you and him and anyone of the caseworkers that you now deal with concerning babyboys medical/counseling issues?

Will your older children be able to have regular contact with him so there is some semblence of consistancy in his day to day happenings?

Loui

Good Morning Louie,
BabyBoy's father lives 1200 miles away
Last summer I tried to emphasize the importance of continued therapies while BabyBoy visited his father. His father did not even look into it. I suggested his hiring a daycare person who had experience in special needs or a daycare person who would focus on BabyBoy one on one, no other kids. X-h did not. I suggested BabyBoys dietary needs, they were not followed (ie, on the flight from here to there, x-called me from stop over apprx 7pm, BabyBoy was evidentially cranky, I asked if he had eaten, he had not, x-h did not know what would be best from airport, I informed my experience there s always healthy foods such as fruit and plain carbs available. Okay said x-h. I spoke to him the next day and asked what he had found for BabyBoy to eat, x-h said he gave him a can of Pringles and a soda, then expressed his dismay as to why BabyBoy felt icky for the rest of the flight.) X-h eats out allot as well. I suggested x-h monitor BabyBoy's play w/ his half sister who is 9. She has a tendency to be rather cruel and rambunctious. X-h did not and BabyBoy came back scared to death of the dark, full of really really icky potty talk, full of untruths, inappropriate behaviors abound, when asked w/o leading questions where he observed these, it tended to be from his sister or the daycare x-h did place BabyBoy in. I would ask how BabyBoy was sleeping only
to find out that he had NO set bed time and was regularly up very late. I had suggested that BabyBoy not be run ragged, ei not too many excursions, only to find out there was very little down time. BabyBoy even expressed that he did not like how people "said let's play let's play all the time, they wouldn't let me rest. They wouldn't let me be quiet."

the list does go on.

Believe you me, as hard as it is, I hold my tongue w/ the situation. I simply "suggest" what would be best and hope and pray for the best.

I dunno, Louie, I am scared for BabyBoy. X-h really really does not get the parenting a SE child thing.

Holding your tongue may be seen as contributing to gross neglect of your son, Hypatia.

You might want to think things through again. Last year was rough -- are you willing to stand up and say yes, I knew this was going on and didn't take action to correct it?

Maybe you can have the therapists you work with delineate schedules to him. Find out if there is a daycare that you can say to exH you are putting him in while he's here and then be in touch with them about his special needs.

Is there some way you can put some legal restraints onto this? That these are rules that have to be followed or you can come and get him and bring him home?

Loui

quote:

Originally posted by Hypatia:

I know that many will think and/or say, "just let it go and have faith"....... It does not work that way w/ a special needs child.

As the parent of a special needs young man (my son is 22)... I will tell you that NO WAY would I say just to let go and have faith. NO WAY! Our children need help, support and guidance... and yeah, letting go and allowing them to do age/disability appropriate living is necessary, but the areas where they need intervention... they NEED IT...

Hy!

PS: hrt2stne, Your post, the one that originated this thread, has so much in it that I want to comment on, but I don't have time right now!

I'll be back... in the meantime...

Bless you, J_J, for saying it so well!

Hypatia, the thing with "special needs" kids, is just that - they have special needs, and require special care - what can work for some kids for a while are too much for these cherubs. Unfortunately, that means WE have to assure the special care is given, and sometimes, that means we have to make tough choices, and/or "rock the boat." Tough stuff; necessary stuff. Personally, I have hated the way I've felt when I "knew" what my son needed, and that was at odds with what my H or the MD's thought, But you know what? I haven't been wrong! I know this boy, as no one else does, I spend more hours, more thought, more observation, so of course I do; it's still hard to say - "no, I don't think so."

My heart aches for our lovely children, living in a world that doesn't really "get" them or their unique set of needs. It also aches for us, who can see so clearly, and fight to get what's best for them, but are dismissed as "controlling," or some other thing. But what else can we do? It is the responsibility that we have, to provide what is best for our guys.



h2s

Good Morning X-H,
I will try to, over time,, try and describe to you the nuances of BabyBoy.
It is very complex and difficult to put into perspective.
I fear that i will leave out any number of details that could or could not be of importance.

I fear that in trying to convey to you the importance of any information will be taken as an insult by you, as it seems to have been in the past.


What is most important to convey to you is a matter that every member of BabyBoy's team sees as significant. BabyBoy has "regressed" significantly at times that have coincided w/ his returns from Georgia. These "regressions" have impacted most aspects of his life, school, therapy, home life, social interactions, sleep patterns, sensory integrations, eating habits, health, anxieties, speech etc. These "regressions" have lasted months at a time. Or, it has taken the team month's to get BabyBoy back into a place where he can function as stress free for him as possible., to bring any amount of "normalcy" to his functioning.

I will write more over time as the information is difficult to organize in a manner that would be best suited to help BabyBoy w/ his visit to the South.

Hypatia

This is a copy of the email I sent to x-h this am.

Goodness, I do hope I broached the subject respectfully.

Tell me your opinions.

Next i will cover the potty mouth issue.

I figured that if I gave x-h a little bit to digest at a time, maybe he will not feel overwhelmed or affronted.

BTW, each time there has been a evaluation from a team member that x-h has had questions about that he has asked me, i have referred him to the specialist who wrote the report. As of yet, I have not heard that he has contacted any of them. Also,, he missed the last teleconference that was scheduled w/ the team.

There is a legal advocate for Autistic children right here in this town. I plan to contact the legal office on several issues. I will have o include the well-being of BabyBoy as well.

Hi Sweetie,

I can't give you an opinion, today, I feel too un-grouned, but I am proud of you.

This is so difficult - Asperger's syndrome - high-functioning-autism - austism-spectrum-disorders..... The experts cannot agree, and we're supposed to.....?

Me? I believe in snuggles and Scrabble - my babyboy can beat me at it - huh, does THAT provide a wealth of contradictory feelings!!

I don't know, but there's this feeling that everyday that's good for him, is a victory, and the days that aren't so good, are a search for better days.

I was reading the book I meantioned, and it says something about "some" of these kids can grow-up to have meaningful carreers and even life-long relationships. The part that scares me is what about the ones who do not fall under that "some?" How do we know which ones will, and what if my son is not one of those "some?" How much of that is within my power to effect? What if he's not one of the "some?" Then what happens?

As if today is not enough to do, we don't have the luxury of not worrying about the tomorrows.

And then he says some amazing thing, and my heart over-flows with joy and awe, that the-powers-that-be, thought it was a good idea for me to be his mother.....

WAIT!! I do have a opinion. That legal advocate for austism - an EXCELLENT idea!!

Peace and love,

h2s

quote:

I was reading the book I meantioned, and it says something about "some" of these kids can grow-up to have meaningful carreers and even life-long relationships. The part that scares me is what about the ones who do not fall under that "some?" How do we know which ones will, and what if my son is not one of those "some?" How much of that is within my power to effect? What if he's not one of the "some?" Then what happens?

Hrt,
this thought has been on my mind as well.
It scares the bejeepers outta me.

I am pretty good at letting it go, for the most part. It is a new thought so letting the fear and concern go will take practice.

My word, he is so beautiful. I love him to pieces!



I have been watching my precious baby change dramatically over a very short period of time. Unbelievable.

I just wanted to stop back in and tell you both that I really do understand your fears and hopes for your children.

My son's story begins with his birth -- he wasn't breathing -- and is still being written 22 years later. I've written about him before, many times, in fact... he attempted suicide when he was 8 years old, which was horrific, as you might imagine... and things got very difficult from that time forward, especially with regard to OTHERS understanding him (I always have and do, of course).... and believe me, his father *still* doesn't understand him... which breaks my heart.

I just understand. I want you to know that.

I have very little time to write these days... and wish I had more, especially at times like these. In my prior life (before I moved to Canada) I was an advocate for parents of children with special needs and also a trainer for adaptive technology for ten years. My heart wants to assist people with disabilities... it's been (unfortunately) impossible here (for many reasons, and I don't want to threadjack anyway).

Just know, I'm here... and hear you guys... and know your struggle.

Hey Nyneve!! just a quick hello and to say it's lovely to see you. Even if it's only for a quick flyby...

Loui

Hey Loui!

Nyneve, sweet heart,
it is always a pleasure to see you anywhere on these forums
And you love and support are very much appreciated



H