Part of our Story...hoping to encourage. VERY LONG! TWO Parts! at least! :D

[Mother's Heart]

Hi friends.

I posted this awhile back on Child Neurology..intending to post it here as well but for some reason that didn't happen. I think maybe I wanted to review it first, since I wrote it quickly in the middle of the night, and see if there were additions I might make of interest to ASD'ers. Anyway, Laura's question prompted me to check and find it wasn't here, so I decided to post it as is. Many of you have heard bits and pieces of this here already. Please forgive the length, and all that I left out too. If you could wait to reply until I get two more posts on here the whole story will be in one spot. It took two posts to fit it in. :D
(:p MILI :p)

[Mother's Heart]

I want to share a part of our story, because it’s such a joyful thing for us, but more as a way of encouraging other parents to hope for their kids and work with them with faith for their potential and their future.

This has been awhile in coming so I don’t know where to start and what to leave out. Oh boy. This is going to be so long. I’m sorry. Read if you want. Read in installments if you want. :D It’s just a small part of the story..I guess I should’ve started telling it sooner, before it got so long.

The backstory:

My son Donovan was born almost 14 yrs ago. He had multiple birth anomalies but the doctors couldn’t fit him into any syndrome, at the time. Later they came to believe that a lot of his issues could be explained by Valproate Embryopathy (developmental damage caused by my use of AED med throughout the pregnancy).

He had a rough go physically for the first half dozen years, battling seizures, severe reflux, asthma and allergies that absolutely dominated his life, and threatened to take it almost daily. The first 4-5 yrs were spent just trying to keep him alive. He had mixed muscle tone and such severe dyspraxia that for him to learn any motor skills took literally thousands of Hand-over Hand repetitions. Motor development was delayed and disordered but he did gradually build up a repertoire of physical skills and did learn to walk and do most things, in time. He is still learning, still gradually coming to master the clumsiness of his body. The hemiparesis he had as a little guy is real subtle now.

Anyway, as early as five months of age I questioned Autism (no eye contact, hypersensitive to touch, non-responsive to speech sounds) but he learned to speak around age two. Not functional speech really, mind you, but for a few months he could echo anything and could label things,. Though he had about 300-400 single words and a few stock phrases he didn’t really use speech for interaction much. It actually didn’t even seem voluntary. (I remember his two spontaneous utterances...that's how rare they were) At age three his speech vanished and other autistic traits became prominent. He was officially diagnosed at 3 ½ yrs. Preschool seemed good for him. Kindergarten was okay for the first semester, then he became miserable physically and therefore behaviourally, Had a surgery at age 6 ½ that dramatically improved his health. He began sleeping, eating well; His seizures, asthma & allergies decreased. His behaviour improved but still was quite challenging.

Through all this he is still almost entirely non-verbal. We tried speech therapy, Sensory integration therapy,ABA therapy for 2 ½ yrs, allergy diets, vitamin supplements, using sign language, using PECS picture cards, teaching verbal speech. All showed limited success. He could always communicate with me, what he wanted anyway, or that he was uncomfortable/sick...but all in the generalities of non-verbal gestures and physical manipulations and body language/facial expressions that all mothers can read in their children, being so familiar with them and their habits.
We have an almost symbiotic relationship anyway. We move almost as one.

He went to school until he was the age of a 3rd grader....the last 3 yrs he was in a special Autism classroom. During that third year iep mtg the teacher (who was very good and knowledgeable about Autism) stated that she had come full circle. She’d tried everything she knew and just couldn’t figure out how to teach Donovan and she wanted to start over and try it all again. Sooooo....the plan she had was to minimize ALL his objectives.....just take a VERY few, very simple ones and try to get mastery of SOMETHING that they could prove. (Put a plate on the table at snack time, walk the last 25 feet to the classroom from therapy/gym etc, and follow the visual schedule to hang up his backpack I think it was) This was a BIG change from his previous goals. That’s what pushed me over the top to choosing to home school him. I experimented with it that Spring and Summer to see if he would work with me, then brought him home. I’d hired a private O.T. to work with Sensory issues to help decrease aggression. She also chose to work on writing his name and ADLs. The school had included trying to teach him to write his name for 6 yrs, to placate me since I insisted that he could already do it if they would just put their hand like a loose cage around his to prevent him from forgetting to stop at the edge of his letters and keep going. That last year they got him to write “D”, then “DO” then he fell back to just “D” then nothing, then “DO” etc. They didn’t expect him to be able to do it and it showed. This was how all of his skills typically went...he would progress, then seem to be unable to perform skills/steps he’d ‘mastered’ beforehand. What they didn’t hear me saying was that his performance is like a roller coaster. He gains bits of skills, then seems unable to do them, but when he begins doing them again he picks up where he left off, and doesn’t have to learn the whole thing all over again. He can build on the repertoire he had already acquired. It was like the low valleys of the roller coaster was a little higher each time, and the top of the hills were higher too. They couldn’t accept this, after all, they couldn’t prove on paper that he had the skill for 80% of sessions for three weeks straight. I think it was that he was being asked to do the things in different ways or different environments that he just couldn’t cope with. Anyway...brought him home...in TWO weeks he was writing his first and last name with proprioreceptive input. Soon he was able to write any and everything you ask him to. He was not able to spontaneously write anything from his own choice. Then I began giving him choices of things to write. (For instance, following a trip to the zoo, I wrote out several sentences about things we saw and did there, two pages worth. Then had him choose what he wanted to write in a letter telling his grandmother about his trip). Still he couldnot choose to write anything he wanted to say...only what he was directed to write.

The things I did differently in home school were:
1)place higher expectations on him, challenge him
2) embedded all of his work in meaningful, functional tasks and contexts
(So, number recognition is using the microwave to cook lunch. Sequencing is performing tasks in order, like putting on clothes, cooking in the microwave, getting a goodie out of a vending machine, setting up the wading pool, getting in the car and putting on the seatbelt etc. Sorting things by size, shape, function was things like emptying the dishwasher and putting away the silverware, matching by the cups/glasses to put them in the shelf, etc. I tried to use as many tasks as possible that were desirable to him, so he would want the end result. If he knew the final goal he could figure out how to sequence the steps along the way, instead of being totally lost with arbitrary tasks or arbitrary steps.
3)giving him a wide variety of novel and challenging tasks, instead of simplifying what was asked of him.
4)respected him and acknowledged his abilities and his performance.
5)tried to respect his sensory needs

He ATE it uP!

Anyway, he has progressed steadily through the home schooling time for the past few years though we’ve had a lot of other surgeries and other interruptions in our life and I feel like I could’ve worked MUCH harder with him.
He's learned so much and come so far. And I thought he'd already come far. Little did I know.

Please read part two on the next post. It's what I REALLY came here to write about.

cj \o/

[Mother's Heart]

continued:

THE STORY--PART 2:
Here’s the BIG thing. This boy has learned to communicate in writing....and I’ve found what an amazing person is inside of him. For one thing he knows TONS. He has been here all along...listening and storing away every bit of information that was around him...even though most have thought that he was oblivious to his surroundings and we didn’t know if he could ‘hear’ speech, how good his language comprehension was for complex language or what. Since he didn’t show outwardly what he was following we just didn’t know. He was only able to respond to phrases and expectations that had been repeated in the same manner hundreds of times, and then his ability to respond was very inconsistent. Getting around the dyspraxic delays was tough for him. It took 1min32secs for him to respond to a simple command like ‘stand up’.

Anyway, back to the learning to write:
a year ago, in the summer, I sat down with him at gramma’s house to interact for a few minutes while we waited for a show gramma was watching to end. I had a magna doodle board and said, How about writing something to gramma? He wrote (Hd-over-Hd) “hi Gramma” I held it up for grandma to read across the room, then erased it and asked him when he fussed what he wanted. I wrote, “I want” then he filled in the blank with “ice cream”. We’d talked earlier about maybe having ice cream before bedtime. He got it of course!

Okay...that was June I think. No more writing until one day in mid-September. I was typing on here and he came to get me to help him with something....as he does every 28 minutes (how long a video episode lasts). He touched my wrist (that approach he’d learned over the past year or so, instead of grabbing me and pulling or pushing me off the chair). I got up but as I followed him to the t.v. we passed the doodle board and I said, ‘what do you want?’ and stuck the pen in our hand. He wrote “video”. That started it. From that point on every time he wanted something I encouraged him to write it on the board. (Then took lots of photos.;) ) Then we started ‘testing’ him to see what he knew. We started wtih pre-k and kindergarten concepts like colors, matching, names of people we know, opposites, numbers,etc . We were so amazed at his responses. We soon found ourselves, instead of just doing basics, scrambling to see if we could stump him. VERY VERY rarely could we. All his writings were one or two words answers. Never any more and only ONCE did he initiate the writing or write without a question being asked first..

Well, Thanksgiving came...we had a few illnesses and surgeries in our family, I had hands too full to push the writing and we fell back into our old way of communicating. I had a hard time getting him back into the swing of things with that. THEN Spring Break came....we visited gramma, came home and I dug out the notebooks and he took me to the paper and wrote, “Would you make me a salad” (I’d made salads for her at her house every day while we were visiting) :D :D :D I made him one, of course, and told him he should use a question mark.
Next day he wrote, “would you make me a salad?”

I jokingly commented on the phone to Grandma, I guess I should’ve taught him to be polite and say ‘please’.

He must’ve overheard me because next day’s offering was,
“would you make me a salad please?” :D :D :D
(I was out of salad makings and took him to Wendy's that day. immediately "I want to go to Wendy's to get a salad" was his favorite thing to say.)

That was April...the beginning, and the floodgates opened. What a WILD ride this has been. Incredible!
This boy is soo smart, and so full of information, and has so much more savvy than I ever dreamed. We are having a blast, though the honeymoon is over in a way, because he has now begun to say things that are not appropriate, at least not within our family values, lol..and he is SUCH a teenager, full of sass and sarcasm and jokes and it is unbelievably wonderful!

The hard thing is that now we are also working through all the hurts and such of being a teen with a severe disability. He suffers because of his inability to speak verbally while he sees it looks so easy for other people. And he suffers because he believes Autism means he is ‘not anybody who will be any good’. :( Heartbreaking! But, so much more so if he had to deal with ALL These thoughts and feelings on his own, without anyone on the outside to know about it. I’m so glad he can communicate now. Now I have to learn how to teach a suddenly ‘older’ child all the things parents of interactive children have to deal with. (Heaven help me, and him)

A really cool thing is, he has been absolutely violent and unpleasant toward his sister for the past few years, hitting her and throwing things at her (he can really throw! :D) and they lost the close interactions they used to have. She was always his main teacher and friend when he was little...did ALL his therapy and often cared for him. Well, this summer they re-formed a very close bond with each other and worked out a way to talk to each other (he writes with his finger in her hand). They can now talk to each other, and talk about me, and goof around. This summer they corroborated on projects and such together, like decorating his room, writing out Christmas lists, making crafts, shopping for clothes, begging to go along with her to rock concerts...arguing about where to eat out, making snide remarks, then apologizing. They have their BOND back! If there were nothing else from this, then THAT in itself is Heaven’s Treasure.

now he can explain his sensory issues, where he CAN explain them, he can explain why he is aggressive, why he has melt-downs,, he can grouse about being disciplined (“that is SOOoooo not my problem!” LOL) He can make excuses to get out of trouble (“I didn’t mean to be bad in the bathroom, but the water THANKED me for splashing it out of the tub, mom!”)He can tell me when he’s afraid or sick, or how he got hurt when he comes inside bleeding. He can correct us when we misinterpret him. He feels more respected...and he is.

He’s so funny, he adds lots of spice to our family conversations. Hee hee.

And even with all of this, EVERY day I learn more and more of the more and more my son is and has. My understanding is constantly expanding, and my expectations for him c onstantly grown.



The thing is.....what I want you guys to hear about this is this:

Just because your child doesn’t SHOW on the outside what they understand doesn’t mean they DON’T. And just because learning new tasks seems SO difficult as to be nearly impossible, doesn’t mean it IS impossible. Don’t give up. Work with your child. Be patient and persistent, resourceful and creative and give it time. Search and search and search for a way for them to communicate! Remember to take time to expose them to fun and interesting things, not just the necessities of survival. Stop to relax and enjoy moments together beyond celebrating the accomplishments. Set your hopes and expectations high.

Each tiny task or step of a task they learn sets the stage for more to come.


Jenna,
my “non-verbal” son turned out to be SO very “verbal”.
People all round are shocked and incredulous...but it’s true. And someday they will come to know him better, because he can reveal who he is more with words than he could before. I really hope Jake finds his way to communicate. His being able to point to pics and letters ought to be a super jumping off point for him to learn to communicate, either through speech or augmentative methods.

Micky,
Your Jake has always reminded me so much of Donovan. I love the way you work with him...and always have this deep, intense feeling of wanting to urge you to believe in him even more, expect more, treasure more. Find more ways to get inside of him, to let him out.I just KNOW that he’s got more and more running around inside that determined little head of his than you can imagine.

I know just surviving the day is exhausting...believe me, I know! But even though professionals and friends all said I was doing so wonderfully well, teaching him so much etc...I wish I WISH I’d done so much more these past ten years. I really COULD have! And it’s not just the cognitive/linguistic/academic expectations I could’ve raised, I could’ve expected much more behaviourally and functionally too. Let me tell you, now I am!


Oh boy. There is so much more I could say about this. So much more I could tell about this part of our journey. I know it was rambly and incoherent but....well, it’s just too much for my pea brain.

Our world is so totally different in our familythan it was just one year ago. Totally different, and one big part of that difference is finding Donovan’s pathway of communication.

peace,
cj
~\o/~

[Mother's Heart]

okay....that's all folks...at least for now. :) I hope it encourages at least one parent or gives somebody even just one idea to try.

[N&L]

Oh, that is absolutely beautiful. It brought tears of joy to read your post. Glad that he is able to express his thoughts and feelings.

N&L

[tgrimes]

MH -
This is so encouraging... I remember you posting about his feelings of not being to be 'any good' before. This is particularly hard for me as well - I know when my son says negative things I try to validate the true parts of what he is worried about, but then go overboard with positive stuff... and he winds up having unreasonable thought of superiority or entitlement.

Anyway, how is the stigma thing going with Donovan now?

[Isabelle]

Halleluyas :D :D

[Italia]

I'm really touched,and I cried too as I can really understand your joy and your feelings,I hope I'll be able to be as strong and helpful with Enrico like you've been with Donovan!:)

Please tell us more!I really feel better and encouraged!

All my love to you:

[Mother's Heart]

I'm really touched,and I cried too as I can really understand your joy and your feelings,I hope I'll be able to be as strong and helpful with Enrico like you've been with Donovan!:)

You will be. :)

[Mother's Heart]

Halleluyas :D :D

:) :D :D :)

[Mother's Heart]

MH -
This is so encouraging... I remember you posting about his feelings of not being to be 'any good' before. This is particularly hard for me as well - I know when my son says negative things I try to validate the true parts of what he is worried about, but then go overboard with positive stuff... and he winds up having unreasonable thought of superiority or entitlement.

Anyway, how is the stigma thing going with Donovan now?

I hear you tgrimes. You require me to think....and I am in the midst of 'stuff' here....so I'll reply later.
I can't wait to tell you about today--'cept it ain't over yet.

[Mother's Heart]

Oh, that is absolutely beautiful. It brought tears of joy to read your post. Glad that he is able to express his thoughts and feelings.

N&L

Thank you N&L. I get tears of joy too. 'tis a really good thing.

I can't imagine that parents of n.t. kids understand the depth of joy in this.

[Mother's Heart]

okay. We are moving on now. Please bear with me. I'm sorry it's sooo long...but I'm no good at summarizing anymore and this story I particularly don't know how to tell briefly. Read if you will:

I am so thrilled! DS is still fighting the battles (most especially the one where he gets overstimmed and either throws something, hits, or hits himself...and the sibling rivalry one which also involves all of the aforementioned reactions mixed in with whatever it takes to control his sister:rolleyes: ) Yet he is learning so many things, many of them subtle, but I see it all coming together. Referencing me when I call him from a distance, holding his hand out palm up to receive something being handed to him, being more independent in doing daily tasks, being able to follow verbal only instructions, from a distance. He still struggles somewhat Buuuuuuut....

:D

Since November Donovan's ability to write has continually improved so that it is more legible, much smaller. For a LONG time we were wiping out forests right and left because we were using legal size pads and he could get 3-4 letters per sideways page and often had to rewrite over and over to get me to figure out what he wrote. Now that he can write much smaller and more legibly (about 1/2 inch high letters in 20/20 marker) we go through a lot less paper. :). This means that others can read his writing. Someday I expect him to be able to write with other people without my DD or myself being present. For now we are the only ones he can do this with well enough to make it worth anybody's while.

But...here goes:....it is the nature of what he writes now that is so wonderful. He is so full of it! lots of joking and teasing, and complaining, and he even tried to 'lure' my daughter into his room to help him with his vcr the other day by telling the silly bunny-obsessed girl that she should come into his room, there was a bunny in there and while she was there she could help him wih his video. :D

The other day we had decided to go eat at Subway. On the way I pretended to have forgotten where we were headed. (okay...at first I really DID forget..that's been happening a lot lately) I asked the kids and sister was noncommittal. I asked Donovan if he remembered. Yes. Okay, when we get to the corner you tell me which way to go. He told me this:
okay....turn right instead of left to Subway and go up to I-70 to Wendy's! :D :D :D Subway is DS' preference, Wendy's his. LOL.


Oh wait. You haven't heard the least of it!
He tells us what he wants, and what he thinks, and relates things that have happened. asks the occasional question, corrects misconceptions, etc etc. there's not much he doesn't communicate.

But here's the climactic long part of this story:
DS has been asking to go to the worship service with me...instead of remaining behind in a room with a man and his videos/food/puzzles. A couple of weeks ago he asked to go to worship and I took him, of course.
The pastor was preaching about how we should view our past and he requested the congregation take a few minutes to write down the things from our pasts that haunt us. Well! Donovan grabbed the pen and started writing. He wrote about saying something rotten to her and wrote that he was sorry and he wanted to tell her he is sorry and ask her to forgive him. I said, that was good and he could do that. Asked him who he was talking about and he wrote his sister's full name and wrote that maybe she wants to forgive him. Well, I couldn't read 'forgive me' so I asked him 'maybe she what?'
He decided to define it for me so he wrote: "maybe she wants to make my time easier by taking away all the past things". I still didn't get he was just defining 'forgive' and I thought that he was adding to what he wanted her to do. I thought it was a rather tall order to ask a teen girl to take away all the past things so I said, "L. can forgive you for the bad things you've done to her and said to her but only Jesus can forgive and take away all the past things.

Well, He wrote: "maybe I need.....then the offertory music started. I kept trying to get him to finish that thought but he just wrote 'music' like 'leave me alone to listen to the music', SO,,,we sat back and listened to the music. As soon as it stopped he grabbed the pen again and wrote:
I'm ready. He paused and I'm thinking what exactly is he going to write he's ready for? ready to leave here? ready...?
He continues: "I'm ready to ask Mr. Jesus into my heart now."

:) :) Well, then the pastor says, let's go out the way we came in, singing "I'll Fly away". Donovan jumped up and gleefully flew away... down the aisle and across the front. :)

So.....later in the week....there's more--to be continued on the next post:
(please wait for me to post the rest before replying. thanks.)

[Mother's Heart]

So...later in the week:

We sit down to talk about it.
(I know we're supposed to keep religion out of this board...but this is as much about ASD/human development as it is religion)

I set up a table in his Sister's room.
I show him the note he wrote about Mr. Jesus (where'd he get that 'Mr'?)
and ask if he remembers. He writes "yes, I remember". then writes very neatly and beautifully two pages about how he isn't supposed to be in his sister's room while she isn't home and that he doesn't want her to get mad etc. and asked if "maybe we could ask her" (how cool is that?!)
I said I had asked her. He writes:" Okay, then I am okay".

Then I asked if he had any questions or wanted to talk more about asking Jesus into his heart. He wrote, "No. I am ready now."
I said I had questions for him. To make a long story a little shorter I went over basic scriptures and concepts and asked him to tell me what he thought different things mean, like what 'sin' is ("when you do something that makes God unhappy"). He explained everything so well. And when I would make a key comment he would write "I know", "I know that" or "I know that too"
He was so certain of himself, and so unwavering...so determined too.

After awhile he wrote: "Can I take a break now?"
(I'm so pleased...we've worked on his learning to do that while we do table work)
I told him, "sure, just come back when you're ready to talk more."
When he came back he wrote: "I'm ready to ask Mr. Jesus into my heart now" (again.The kid was certainly patient with me)

I explained to him about different ways to pray, (out loud, inside, following another's prayer,etc) and told him he could choose how to pray. He chose to write it out. Simple and to the point...."Mr. God. I want you to forgive my sin and come into my heart to live and I want to come live with you (in heaven? illegible) when I die. In Jesus Name Amen."

Then he wrote, "I'm happy that I'm not going to h*** anymore and mainly I'm happy that I'm not sinful anymore and I'm saved!!!!"

He was absolutely overjoyed. He is known to have days where he laughs and moves and squeals and 'babbles' and 'sings' but that day I tried to talk with my mom on the phone and we couldn't hear each other. He went on for hours, marching and singing and...just being joyful...loudly. It was so strikingly different from his usual happy days. What a marvellous day that was!

I asked him if it was okay if I shared what he'd written with the pastor. He wrote: "Yes, it is. I want to tell everyone about it!"

The next Sunday in church he was mr. stimmy....!!!....I worked to help him get through the service....at the end they were praying, the message was about sustaining Grace... it seemed an unusually quiet prayer. He fidgeted and I handed him the paper. He wrote: "I want to make a noise now I'm so happy that I'm saved!!"Silly me! I was trying to make him sit still and be quiet. sigh (:D we should all understand so well.)

smile. And so, on to the Next Sunday. The sermon happened to include Baptism and there was a baptism at the end of the service. When they hand the offering plate around there is a card to put in if you want to be baptized the next time around. Donovan took his paper and wrote<
"I'm ready to be baptized now". I said something about do you want to put it in the offering plate (which had already passed by us) or just go talk to the pastor later. And he wrote: "Yes, put it in the plate as soon as you can". Again, they began singing and Donovan took off celebrating.

So...thereby hangs that tale.

who would've ever thought a few years ago that someday this 'very severely Autistic boy" who 'doesn't appear to understand much, if any language" would be where he is today?

okay...Mom would've thought so....but who else? The communication ability was an answer to my prayers two years ago that he learn to communicate well enought that I could know if he accepted Christ. And then this is also answer to my prayers which have been constant since last summer.

Just WHERE is that autistic boy?
Just how Happy can a mom be?

[Mother's Heart]

so...TGrimes. I'm thinking that there is hope for him on the Self-concept/stigma front. yes?

a few weeks ago I had a conversation in his presence with one of his carers about that comment and about how I didn't think Donovan understood that God has designed him just exactly the way he should be, and that he can't fill God's purpose for him or for him in the rest of our lives if he were different. That he is exactly who God planned for him to be and he fits perfectly in God's design and, because of that, he is worth every bit as much as every one else just exactly as he is.

[Mother's Heart]

I guess I'll stop now. I keep going on and on.
I'm so glad he has made it clear to me....in bits and pieces over the past year...and over the last two weeks....that he truly understands all of this.

happy mother's heart sigh.
:)

[Mother's Heart]

(I guess I didn't stop. This I wrote elsewhere....decided to share it here too, though I know that none of this needs explaining to you all here, who already understand this, and the so much more left unsaid.):

I so wish I could accurately portray who this boy was as a preschooler.

How to describe him so anybody else really understands?
A boy who for two years was just plain passive. Medically fragile but also very passive. The boy who became very self-abusive. Dropping to the floor literally every one to two minutes throughout the day to violently whack his face/head against the floor...always living with bumps/bruises and blood....busted lips etc.
The child who didn't seem to even understand aNything that was said to him. And if he perhaps did was unable to respond to it in any meaningful way.
The boy who for years was constantly just trying to keep up with whatever direction we pushed him. He never knew until we moved him what was going to happen next. Guide hiim to eat, dress, go out the door, no, get in the car...pick up this toy. This was After years of trying to teach him basic motor movements hand over hand. It took much longer for language comprehension to kick in.

The child who evolved from hitting and banging his own head to being aggressive first to mom and sister, then to teachers or anyone else who crossed him by changing his plans, rushing a transition, making an intolerable noise, etc.

The child who has so often cried so heartbreakingly, though actual wet tears are so very rare. The child who didn't understand that it's not socially acceptable to go outside buck naked...at 10 yrs of age. Or to pull your pants down to scratch an itch in the middle of the store check out lane. Nor is it safe to go dance in circles in the middle of the street. Or rush headlong into a lake even though you cannot swim in deep water.

The child who could spin himself in circles for hours and hours....or stand in corners ritualistically observing the shadows....or who would follow a shadow from here to kingdom come if given the chance.

The child who didn't even seem to feel any pain....even when injured and bleeding...or burnt....no tears, no cries for mama to come help and comfort....no coming to mom for comfort any time.

The child who never says I love you. The list just goes on and on and on. So often....we just can't see beyond all of these outside things...to see the child inside. There's a child inside there. That child needs love.

[Mother's Heart]

I talk like my boy's the only one to have changed. and yet, I hear in your stories here how each of our precious kids have learned and grown, in marvellous ways, against all the obstacles in their way. We are so lucky to be a part of their lives.

[peglem]

Mother's Heart, thank you for sharing that story-though it sounds like you're so bursting with joy that you couldn't possibly NOT share it! It gave me great joy to read it and a huge load of hope...thank you so much for that gift.

originally posted by Mothers Heart:
a few weeks ago I had a conversation in his presence with one of his carers about that comment and about how I didn't think Donovan understood that God has designed him just exactly the way he should be, and that he can't fill God's purpose for him or for him in the rest of our lives if he were different. That he is exactly who God planned for him to be and he fits perfectly in God's design and, because of that, he is worth every bit as much as every one else just exactly as he is.

Well said and so beautiful!

[Isabelle]

My son Donovan was born almost 14 yrs ago. He had multiple birth anomalies but the doctors couldn’t fit him into any syndrome, at the time. Later they came to believe that a lot of his issues could be explained by Valproate Embryopathy (developmental damage caused by my use of AED med throughout the pregnancy).

Yes, valproate acid sometimes helps with seizure. For some autistic is given as "mood stabilizer" which instead made him instable and had bizarre behaviours

Had a surgery at age 6 ½ that dramatically improved his health. He began sleeping, eating well; His seizures, asthma & allergies decreased. His behaviour improved but still was quite challenging.

What surgery? Sorry, asking again,if you explain before, I don't remember reading

...body language/facial expressions that all mothers can read in their children, being so familiar with them and their habits.
We have an almost symbiotic relationship anyway. We move almost as one.

He was my pal,my companion

Anyway...brought him home...in TWO weeks he was writing his first and last name with proprioreceptive input.

What is that word,I read somewhere but I forgot to go back to ask

The things I did differently in home school were:
1)place higher expectations on him, challenge him

When nobody challenged my boy he had 'behaviours" why couldn't the "teachers" noticed that? He loved math and his previous teacher was good at explaining, but at this different place the "teacher" couldn't bother and in front of me she gave him for the third time the same math problems I told her why, she said "just to keep him busy" and Danny jumped out of the table....:( :mad: :mad: :eek: cj \o/

Ok,It takes me a long time to read all your observations. Church and religious people were helpful and a disappointment all at the same time

[Isabelle]

are you still on VPA? What is your dose? Did VPA also affected your daughter? Sorry, so many questions.

[Mother's Heart]

Ask questions, of course. Yes, I know this is a LOT to read.

[quote=Isabelle]
Originally Posted by Mother's Heart http://brain.hastypastry.net/forums/images/buttons/viewpost.gif (http://brain.hastypastry.net/forums/showthread.php?p=66496#post66496)
My son Donovan was born almost 14 yrs ago. He had multiple birth anomalies but the doctors couldn’t fit him into any syndrome, at the time. Later they came to believe that a lot of his issues could be explained by Valproate Embryopathy (developmental damage caused by my use of AED med throughout the pregnancy).

Yes, valproate acid sometimes helps with seizure. For some autistic is given as "mood stabilizer" which instead made him instable and had bizarre behaviours
Had a surgery at age 6 ½ that dramatically improved his health. He began sleeping, eating well; His seizures, asthma & allergies decreased. His behaviour improved but still was quite challenging.

What surgery? Sorry, asking again,if you explain before, I don't remember reading

Haven't explained since the new BT board came back. DS had free reflux (GERD) since an infant. The valve at the top of his stomach was completely non-functional, so if he laid down then the contents of his stomach sloshed up into his esophagus, then since the valve protecting him from aspirating food into his lungs also didn't work adequately the stuff would go into his lungs...creating severe asthma and pneumonia problems.
Secondly he had a very Large hiatal hernia. The surgery was to correct these two problems. It was a combination of a Nissen Fundoplication (creating a constriction at the top of the stomach) and a hiatal hernia repair.)

The surgery had to be repeated 8 months later under emergent basis because the hernia had recurred and was MUCH LARGER, almost all of his intestines had slipped up into his chest cavity and his intestines were bleeding because the lining had been torn by being twisted. He was very sick-- from that ulcer, the anemia, the inability to process food through his intestines, the reflux, vomiting and having status seizures. When he recovered the asthma practically disappeared. The food allergies had just been discovered, and we treated them. The seizures faded away. The constant Upper Respiratory Illnesses became much less common. He began sleeping well. you know....it HAS to help to feel better.


...body language/facial expressions that all mothers can read in their children, being so familiar with them and their habits.
We have an almost symbiotic relationship anyway. We move almost as one.

He was my pal,my companion

yes. I understand.


Anyway...brought him home...in TWO weeks he was writing his first and last name with proprioreceptive input.

What is that word,I read somewhere but I forgot to go back to ask

Proprioreceptive? It is the sense (in muscles and joints) that gives feedback to the brain which allows a person to know where his body is in space...what position the joints are in and such.

The things I did differently in home school were:
1)place higher expectations on him, challenge him

When nobody challenged my boy he had 'behaviours" why couldn't the "teachers" noticed that? He loved math and his previous teacher was good at explaining, but at this different place the "teacher" couldn't bother and in front of me she gave him for the third time the same math problems I told her why, she said "just to keep him busy" and Danny jumped out of the table....:( :mad: :mad: :eek: cj \o/

Yes, why can't the teachers recognize that? :( I suppose partly they have been misinformed about the intelligence of a person with ASD and are deceived by the lack of language and resultant behaviours? But then again, this should be a no-brainer for the teacher of any child with any disability....or no disability. imho.

Ok,It takes me a long time to read all your observations. Church and religious people were helpful and a disappointment all at the same time

Yes. I wrote an awful lot there. Thank you for taking the time to try to decipher it. I hope something in there struck a chord with you in some way and helps somehow. Don't worry about asking questions. Ask all you like.
http://brain.hastypastry.net/forums/images/buttons/quote.gif (http://brain.hastypastry.net/forums/newreply.php?do=newreply&p=77095)

[Mother's Heart]

I am no longer on VPA. I discontinued the seizure meds when my son was two years old. I don't remember what the dose was. I regret being too timid to contradict my OB doc and my husband at the time I was expecting DS....because I wanted to d/c the meds at 3 wks into the pregnancy. Might've made a difference.
(The person I've become since having my son would stand my ground.)

While expecting my daughter (2 1/2 yrs before my son) I was not taking VPA. I was however on megadoses of Tegretol (Carbamazepine) the first 3 weeks of my pregnancy with her. I was so toxic I could barely walk. Following a status seizure the attending doc at the hospital switched me cold turkey from the Tegretol (without doing a pregnancy test btw) to Dilantin and Phenobarb I think it was. He refused to call my neuro, his partner. :mad: Then when the seizures didn't stop he said "she's not really having seizures" but doubled and then again doubled the Dilantin dose until I was VERY toxic. :mad: I went AMA from that hospital after a week. (leaving Against Medical Advice) That guy was soon going to kill me if I stayed there.

She was possibly affected by the AED's. The only thing I know for sure is that when she was born the umbilical cord was twice wrapped around her neck but very loosely because it was very long, which is a common result of the Dilantin. She doesn't have seizures but was born with very severe visual impairments. But then she also inherited Ocular Albinism, though that accounts for only part of her vision deficits.

whew. read that! ;)

[Isabelle]

Thanks for taking the time to explain to me all the interventions and consequences. I understand that your dd had an operation to improve her sight, right?

My poor boy was given 1250mg of VPA a day together with 750mg of Tegretol a day and Propranolol 140mg/day. Those doses for a not too tall, skinny guy were very damaging, the caregivers reported the side effects but we were blind trusting too much. Finally, he is 7 months off VPA, still has the abnormal movements and his SIB is there but milder. We are still hoping to get back his old self.

[Mother's Heart]

My DS was given a dose of VPA once. It was different circumstances however. He was in hospital, very very ill, and was given a loading dose of the Depakote to try to stop seizures. But the doc felt it was so urgent to give to him that he didn't check the history and didn't do labwork. If he had he would've known that Donovan couldn't have VPA because of his vulnerability to have his ammonia levels rise. They shot sky-high and it was NOT fun. He is not a candidate for treatment with VPA.

Btw: Donovan was taken off of seizure meds 5 yrs ago. His last seizure was when he had pneumonia six years ago. That was a year after the GI surgery. (he had the flu, was vomiting. Couldn't keep the Dilantin he was on at the time down, plus he aspirated the vomit so got the pneumonia. Not an easy week for him)

He no longer has seizures.

[Isabelle]

That's excellent news!!!!:D
When we finally ended the GP services and went to a specialist, he seeing the high amount of VPA prescribed large amounts of Carnitor to keep ammonia plasma stable. Danny loved Carnitor, anything that tasted or smelled like fish he went for it.
He is not only off all drugs but off vitamins,ok still tons of yogurt/probiotics.
Today he was exceptionally excellent at reading, he even point with his finger (not with the whole hand) to identify stuff.
Oooh! Happy days are her again :D :D
My fear is that he is going to pick up my "beautiful" accent.
Adult autistic can continue learning, the group home focus on his SIB, giving him tranquilizers instead of keeping him busy learning.

[Mother's Heart]

That's excellent news!!!!

:):D:)

When we finally ended the GP services and went to a specialist, he seeing the high amount of VPA prescribed large amounts of Carnitor to keep ammonia plasma stable. Danny loved Carnitor, anything that tasted or smelled like fish he went for it.


we did carnitor for a good while. He was young, around 7 yrs old. If you'd been on the child neuro forum back then you would have heard about it because I had a terrible awful time with the school. I finally had to threaten calling in OCS (office of civil rights) because they were not handling the situation rightly. His fish odor was extreme and they freaked out. Called his neuro a couple of times a week, {without my knowledge} to tell him he should take DS off of it, seated him away from the other children (grrr:mad: ), wanted me to bathe him more, (he had a bath every morning), put scented candles in the room (with all those allergic kids!), etc, etc. I was NOT happy. They wanted him off the only medicine that was helping him. I know I'm mom, but I didn't care what he smelled like, it was his health that mattered.
They used the other kids as an excuse (which I could see, if I didn't hear from others present that it was actually his paraprofessional that had issues with the smell...not the sensory defensive classmates) hmm. I sidetracked. sorry.

He is not only off all drugs but off vitamins,ok still tons of yogurt/probiotics.
This sounds good. I hope he gets all cleaned out and healed from the chemical 'abuse' his body suffered.

Today he was exceptionally excellent at reading, he even point with his finger (not with the whole hand) to identify stuff.
Oooh! Happy days are her again :D :D

THAT is exciting! :D :D This is close to my heart. We have gotten the pointing recently too. I really guess I was beginning to think it would NEVER come.
I'm curious if he does any reading 'for pleasure' or is it only functional?
I'm trying to teach my son to read books because the story is interesting. He seems to easily read whatever he wants, but mostly it is just information that you see in the world and in our written communication. I often write back and forth to him, especially in a quiet group setting.

Adult autistic can continue learning
YES! :D

[Isabelle]

That's very different.

Danny never smelled at fish with those large amount of Carnitor. I smelled the tablet, huge tablet and smelled at fish, but he never, ever smelled at fish. With his late father they ate all sort of fish, the fish smell made me sick but they loved them.

My favorite fish had to be cooked/marinated in lemon for hours and the recipe is called "ceviche" :D :D

Editing: Today he is out of it....

[Mother's Heart]

bumping up to be near the Share your suggestions thread. thanks guys

[Mother's Heart]

bumpetybump

[Jamies Mommy]

What an awesome story and something I've been preaching for years!