RE: Re: Can I please vent.. SUSAN

[Guest guest]

My son was doing very well as a baby. He did have heart surgery and had to

recover from that but he was speaking, able to repeat most any word we asked him

to. He sat up just a month short of normal and walked by 17 months....just

slightly delayed. He was very happy and looked us in the eye. At around age 2

he could drive a battery powered 3 wheeler by himself. We were all amazed.

Somewhere after that, he regressed. He would not speak and he began flapping

his hands. He looked sickly. He had constant diarrhea with mucus, water and

undegested food. We think it was our poor diet, stress from surgeries,

antibiotics, anesthesia and vaccines. Just a combo of things. He could no

longer and still can not drive anything. He can say some words but usually

whispers them. Some of his words are crystal clear. We are gluten free now,

organic and whole foods kinda people. NEVER eat out......except i am willing to

get Mcs fries if he will get his blood drawn. He has a very high blood

iron but does not take iron at all. We now have a 2 yar old as well and our son

with DS/Autism is trying to talk more and is doing lots of things the 2 year old

is doing...including tantrums. For our 2 year old boy, we have NOT done ANY

vaccines. We did not do the vit k shot at birth or the eye ointment. There has

been no anesthesia....tho his ped wants to put tubes in his ears. We say no

way.... not yet. We keep the baby gluten free too. I am still nursing him as

well. We do not want to follow the same pattern we did before. So far, the 2

year old is starting to talk. He does not show any signs of autism.....thank

the Lord God in heaven. He does have very mild eczema (was worse but is much

better) and can get an asthmatic wheeze with a viral head cold. He has had to

have the nebulizer 3 times..... I am 45 here in a few weeks so at my age, this

pregnancy was very high risk for many things. I did not have ANY ultrasounds

nor did we hear the heart beat til about 9 months along. We did not use the

doppler to hear it every month. I did not do labs for anything except a CBC and

basic chemistry. I did not do the glucose test where you drink the pure

sugar.... I know I would fail. I can not have all that sugar. Thanks for the

poster idea. I took pics of the party to add to his book that we use to talk

about his life events. kw

To:

From: agirlnamedsuess@...

Date: Sun, 1 Aug 2010 22:20:05 +0000

Subject: Re: Can I please vent..if only for a moment...?

Do you know what caused him to regress? (Just curious) For my son, it was diet

for sure as one of the components. For a friend of mine, it was the anesthesia.

We regained speech with special GFCF diet.

My son does the same thing with his colored lacing bead strings and also with

his nebulizer tubing. (I guess he figures there needs to be a use for it since

we barely have to use the nebulizer any more. ?)

The strange use of items is part of the autism I think.

maybe at the next party, they can all work on a nice poster project or something

for him to cherish later when the others are gone. I just thought of a picture

poster of all the people enjoying his party and when grandma drove him by on the

last round, you all could hold up the poster. (At very least, he might want to

get off for amoment to get the poster?)

>

>

> I cried as I read these 2 posts. I just sat here at the kitchen table to check

my mail and now I have eyes full of tears that I am fighting back so no one sees

me crying. I too have a son with DS/Autism. He turned 14 yesterday. We had a

small party for him with a few of his cousins over. He did not attend the party

but instead rode the golf cart with his grandma. He seemed to like having the

kids around and would look at them playing on his swings and in the sandbox but

he does not like to be around all the chaos and loud noises. My daughter (21)

made gluten free brownies and put a candle in each one for all the children to

blow out but Talon did not get a candle with fire. He did eat about 3 brownies.

His grandma drove him all around the yard and would pull up to the party for

brief periods. I should be used to this by now but it is still difficult. It is

hard when he yells out and all the kids stop to stare......even his relatives.

They are not mean to him but they do stop what they are doing and stare at him

when he lets loose on a part growl and part howling sound. Anyhow, he did have a

party and he had his bucket filled with various items he finds and then he

carries it with him everywhere.....missing a phone charger??? go check Talon's

bucket! Missing your belt???? go check the bucket. We try to laugh about it. He

is walking around the house with one hose tubing from the nebulizer wrapped

around his wrist and a whole ball of cords and chargers that he has found and

somehow made a huge entangled ball out of. I am trying to focus on all the

positives and be very thankful that he keeps bringing me his birthday cards and

say " happy birthday " (you would not know what he is saying but we do.....very

rough approximation of those words) and he claps and smiles so big. That is good

and I am grateful. I think he wants another party.

> I agree that getting used to the DS was difficult but then when he quit

speaking and regressed into this world they call autism, I was devastated......

>

>

>

> To:

> From: amybanta@...

> Date: Sun, 1 Aug 2010 13:48:19 -0400

> Subject: RE: Can I please vent..if only for a moment...?

>

>

>

>

>

>

> Hi Jenn,

>

> I was the one complaining about not being able to travel. Trust me, that is

> not really the major thing I am concerned about! When things get bad, and

> they are pretty much always bad around here I start thinking about what

> could have been. After Quinn was born I pictured myself as a retiree

> traveling the world with my grown son who had DS. He would be a happy

> comfortable young man who could mostly take care of himself and was just a

> little slower a little different. That sure isn't ever going to happen, it

> is only one of many things that is never going to happen. And if we want to

> talk about not fair, I am a mother of two.Quinn has DS/ASD and obviously

> something else since he is so far behind even the kids on this group;

> is two years younger than Quinn he has ASD. is four years old and

> can't speak in complete sentences. I have to prompt him to say " Hi Mommy " ,

> he has lots of other issues too but he isn't even the child I worry about!

> In my ridiculous little world is a rockstar, he can do so much more

> than his brother that I think every word he says is amazing. I know it is

> crazy, but that is how I have to look at things to survive. I have also

> stopped going to our local DS group events. Not only is Quinn so unlike

> their children, but they all had babies around when was born and they

> of course are all fine. I feel completely isolated as the mom of two kids

> with special needs, I know that even the parents of much more severely

> disabled kids feel sorry for me, because of course they only have the one

> child. If I hear one more person tell me " Oh my, you have your hands full "

> I am going to scream.

>

> So please understand if I feel the need to look forward to going to Europe

> someday in the far far future. My life is very difficult right now. All

> our lives are very difficult right now. We all need to do what we can to

> get through it. Personally, I feel more comfortable knowing that if I need

> it there are group homes for Quinn to live in when he grows up. When I

> start panicking I remind myself that if it gets to be too much there are

> options, I may never use those options but it makes me feel better knowing

> they are there.

>

> I am not writing this to be mean and I hope it didn't come off that way. I

> just want you to have all the information before you judge me again and I

> want you to know that you are not alone in feeling that it isn't fair. It

> really isn't. Most of all I want you to focus on your other three children

> and truly appreciate how lucky you are to have them. When it comes right

> down to it we are also lucky to have our extra special extra challenging

> children, it is just harder to see that sometimes when things get so hard.

>

> Amy

>

> _____

>

> From: [mailto: ] On Behalf

> Of Jenn

> Sent: Sunday, August 01, 2010 3:28 AM

> To:

> Subject: Can I please vent..if only for a moment...?

>

> I sincerely hope I do not offend anyone with what I NEED to say, but I hope

> that you all may at one time or another been there and know that there are

> days when we just feel hopeless, tired, and alone.

> I am fairly new to the group and I had come across someones post

> " complaining " about not being able to travel, etc. I'd like to first

> apolgize to that person for my judging them (personally, in the privacy of

> my own home, but never the less still judging them.)

> I truly believe that we have all been there...thinking of our futures, of

> what could have been or may be,

> A few weeek ago when I joined I told everyone that I am a mother of 4. The

> second born, who is 7 is our precious boy with ds. I was 24 when was

> conceived. 25 when he was born. I knew about when I was 5 months

> pregnant. I was scared, I didnt know much if anything about ds or any other

> condition. As a lot of us think...it will never happen to me. Out of sight,

> out of mind.

> However, coming from a christian background and a divorced family I have

> always been a fighter. Looking at the positive things in life and nurturing

> that.

> After a few days of self pity, I started researching everything and anything

> to do with ds. I read EVERY available book in the library, made calls,

> connections, etc. I felt prepared and ready to help my child achieve his

> potential. After all, I thought, they are known to be caring and loving.

> After he was born I was determined to get him into all therapies, prgrams

> available. I joined local parent gropus, attended seminars and seeked out

> the local pediatrician known to deal with special needs children with a

> compassionate attitude.

> But,...things changed. My once smiling caring, giggling toddler was gone.

> His sparkling eyes now tend to just stare out in space...I felt/feel grief

> for my little boy. Dont get me wrong, I do not love him any less. If

> anything I love him that much more, but I cant help but feel " cheated " . I

> accepted the ds diagnosis. I was positive and dreamt of his bright future, I

> did not however, think this would happen,

> It has been a year since his dx, but it still hurts. I still feel alone and

> feel that I need to do more to help him. I am still a member of our local ds

> group. They just sent me a link of pics from the ds meeting they attended in

> Orlando. As I browsed the 200+ ics posted I first smiled seeing their

> participation, but the smiles turned to tears...thinking to myself, " its not

> fair " , " thats what I thought it would be like. I expected delays but I also

> expected him to be part of a special group, one who he could bond and feel a

> part of. I dod not expect him to prefer to be alone in his dark closet

> rather than playing with his sibligs. I did not expect to miss his smile and

> warm eyes, the connection....

> What is hard is not being able to voice me feelings with anyone, Rather

> keeping them bottled pretending to be strong only to crumble into sobs at

> night when everyone is asleep. This is when I think, :its not fair " \

> Thanks to all who read this. Sorry it was so long but if I cant talk, themn

> at least I write...I need to just....sigh and let it ou.

> Good night to all and God bless....

> Jenn

>

>