So Happy I could Plotz | Autism PDD
So,
BB had his 2nd Dev. Ped. Appointment today. We have been waiting for this. The last time he saw him was in February when BB received his "official" diagnosis.
We worried and stressed. We made lists of things to bring up with the doc. He is very well-respected in our area. There are times that the man has over a year waiting list to get a new eval! Crazy. He is the one to see in our area for ASD. He lives up to the name too. When we have concerns he calls us back that day. If we are researching alternative therapies and we call him he calls us back at 10 pm with all the information he had or has gathered on it from the internet and discusses it with us. Amazing doctor and we are really lucky.
Ok...here it comes.
He said, "[BB] is vastly improved in speech. He is still behind in expressive, he flaps his hands, he is still very rigid in scheduling and he needs to work on his social skills...I have to get the official results of my test, but...right now I see a kid who is more NT than spectrum. He makes great eye contact, he is engaging, he is verbal, hehas been in this office for 40 minutes without a hint of a meltdown, he shows a sense of humor (on and on) <tingles down my spine>. You guys have all been working so hard (BB and team included with parents)." I told him how happy I was and that I was hoping that we would come in and see him and he would say, "Hey, your kid presents with a few speech issues and some sensory and rigidity stuff, but he doesn't look spectrum at all!"
To this he replied, "Well, I can't say that. (and I said, I knew that...it was just a fantasy of mine :) He is on the spectrum and he will always be on the spectrum. What I can say is that by age 6 or 7 you might not be able to see any traces of ASD and there are some parents I can say that to and some parents I cannot."
There was a lot more, but you get the gist. I am so happy. My beautiful little star. He has worked so very hard and he just keeps working to break on through. He is my hero. Forever, he will be my hero. (My Dad too, but right now...just BB)
Enjoy these exciting feelings of victory and promise. Rest assurred, there will be many more such occasions for celebration.
Thanks good people. It makes my soul sing.
Hard to believe too as we had such a rough afternoon. I took the day off work for this and spent the latter part of the day with him. It took over 1.5 hours to get him down for nap as he followed no directions, tore into the bathroom and our room, would not be satisfied with the number of books being read to him, was stimming on a morning ritual ("Flip the bed" as Mom "flips" the sheets in the morning) over and over again and screaming for a good hour before falling asleep exhausted.
I almost had to laugh...almost.
ETA-I also realize this should be moved to updates and successes. so...
Concernedpa.
Thank you so much.
Woodsman, I hope you are correct!
I don't know how old you are, but I get the sense that you have been around fo a bit (I'm guessing late twenties early thirties? You and Stickboy both possess a certain amount of Wisdom that denotes experience...some of which one hopes will come with age ;) My guess is that when you were a babe there was not quite as much of a push for hardcore early intervention like there is now. Also, with all of the press Autism gets and schools incorporating it into their curriculum not to mention scientists trying to figure out just how early we can detect it.
I just hope you're right and that one day BB will be able to look me right in the eye, tell me how much he loves me (which he does now) and talk to me...about everything...or nothing at all
That really is such great and inspiring news Cam!! Thanks for sharing!
heh, great news man! Indeed, it sounds to me that as he gets older the more normal he will be until by the time he gets to middle and high school hell appear totally normal and live an independent life as an adult.Must be a great thing to see in your kid as a parent. My parents were also happy when they received a similar discussion later while I was in elementary school towards the end of that getting towards the teen years.
I hope similar success stories occure for others on this forum as their kids get older as well.
It seems these kids now days appear more NT at a more younger age at least compaired to me when I was little. Jeeze... I was not mainstreamed till 5th grade, I bet hell get their b4 I did!!Wow, Cam - congratulations! That's great news and I'm happy for you all. It sounds like he's doing great, and it must be hugely reassuring that a renouned expert would give you such a wonderful prognosis!heh, im 25, and sighned on just prior to my 25th b-day, so i made the name 'woodsman25' then only cause I knew id stick around a bit, figured parents would like my stories, or possible suggestions, and the fact I love the outdoors and it was a refuge from the kids i went to collage with, i would go miles up mountains (in the adirondacks) or go off whenever i needed... blah blah blah...
When I was little their was no intervention, they said i had autism when I was like 4, placed me in spec ed, i moved, at age 8 they said HFA, continued spec ed, then mainstreamed at age 11.
Obviously as u can see yourself, the older your kid gets the better he may be, as he may even become awair of some social issues, or at least perceive that others can observe him (sounds weird, but my problem was that I could not see others as they saw me or see myself thru their eyes). Hmm... maby that only makes sence to me.... anyways...
Ya i do alright as an adult, I make /hr driving a forklift for a major warehouse that supplies grocery product all over NY, NJ and PA. Own a home, graduated collage (2 year degree, never finsihed 4 year) and drive. I have nice things and live alone and I bet not only will your son and many others do just as well or better, but may have less of a bumpy ride along the way as a result of treatment (I.E. wild teen years, fights, and police encounters/arrests). My parents saw me do so well in the later elementary school years, then as a teen I seemed to regress (tho socally i imporved, it was not on par with the other kids who all knew it
) and get into alot of trouble as a result of hanging with the wrong crowds, and this continued all the way until collage before I saw my problem (and by then I was an adult, my parents had no power) and knew finally my issues and fixed the problem, i was oblivious and i think intervention these days will help with all that.
Really, I seriously beleive intervention, tho it helps as a child, will REALLY help as a teen!! I did it the hard way, and could have ended up with not what I have now to show for the hard work I did (with parents help) while growing up!
Heh, i wrote a bit more but must leave for work shortly and the power went out breifly and i lost half of my post
darn!! I really wanted to get that all out...WOO HOO Congratulations thats great news! It gives me hope and brought tears to my eyes!
YAY!
Thanks again people. It feels really good right now so I will try not to look at his IEP (the copy that just came home) because that needs amending. I will try to not work with DW tonight on new programs we can do at home. I will try to not over-analyze what was said in the Doctor's office with DW tonight. I will try to ignore te fact that I hear him upstairs with DW (as it is her bedtime with him tonight) stimming on the sound he is making bouncing his foot on the floor or counting to one hundred before he transitions in and out of the bath...or takes his clothes off. I will ignore the tantrum he just had as Mom tried t take his shirt off before he got to 100 because it takes so damn long...and just bask in the glow
Woodsman...when you have the time...I would like to hear much more. Whatever you have to share sir.
That is awesome
Cam - that is awesome! I am doing the "snoopy dance" as well!
Great news!
THAT IS SOME DAMN GOOD NEWS!!!!!RIGHT ON BROTHER, MAN!!! KEEP ON FIGHTING THE GOOD FIGHT!!!!
That is great news!!! Give yourself enough credit-- you, I'm sure, have been his hero. Wonderful!!!!!!!!!!!!!!!!!!!!!!!!
It is really great to hear success stories- gives me something to look forward to for J.
>>>just hope you're right and that one day BB will be able to look me right in the eye, talk to me...about everything...or nothing at all
I sure am with you here Mr.!
Congrats to you, this is awesome news.
That is awesome Cam. BB has worked hard, but so have mommy and daddy. Sounds like a celebration time to be sure. Keep up the great work.That is awesome news. Enjoy every moment with your son and his successes. I'm sure he will have many.Hi Camusa:
Your post regarding your Buddha Boy made my night. I want to thank you for taking the time detailing what you employed to help your sone. Ours are very similiar, BTW.
If I may, how long ago was your son diagnosed? At that time, how did he present? If these are too personal, I understand. I just would love to compare notes.
But most of all Cam, thank you for offering me hope on this cloudy, rainy night. Sometimes Hope is elusive...but not tonight. Thanks.
Peace
Erin
Cam - when I look at all that you do for BB - I am just AMAZED !You and DW are such awesome parents - I am going to print off what you chose and see about a naturopath
Cam,
That's wonderful news! So happy for you guys. Sounds like your doing all the right things, and it's working. It doesn't get much better than that!
Yay! Yay! Yay! That's wonderful!You know, I think I forgot to add that BB has his own para/shadow in both the mainstream classroom and the SMILE classroom.
To flip: It is indeed our public school system, but we pay for it big time...I always wondered whymy taxes were so high here and now I get to see why first hand. The program has been astoundingly good.
JJ: As to your question...there is no harm in asking and I feel quite comfortable answering.
I have always been open to "alternative" medicine. DW has a Masters in Physical Therapy and another in Oriental Medicine. Great combination with my Degrees in Psychology and Social Work...we make a well-rounded home team.
So, to be honest, DW has really done all of the leg work as it pertains to the Biomedical interventions. She researches the hell out of them and we use them if we think it can help. My philosophy has always been, "If it cannot hurt and only has the possibility of helping or possibly doing nothing...then why not?" I must admit that I have been skeptical about some things, but why not try them if they might do some good? I truly do believe that a lot of it has indeed helped! I also know that it has not done any harm and we are leaving nothing feasible untried.
Please note too, historically...Western/Allopathic medicine (what we employ here now) is actually the "alternative medicine." (Look up the definition of Allopathic). Traditonal Chinese Medicine has been around for thousands of years longer than the medicine we employ. There are other great "alternative" interventions as well. I think a good mix of all of it should be employed. Leave no stone unturned. If it can't hurt...
So how did we determine it would be beneficial or what would work? We went to a naturopath. We worked off our belief system. We looked at the symptoms and treated them.
If you have specific questions about supplements and the like, by all means PM me. I will ask DW and I am sure she would be happy to answer anything you have to ask!
ETA: Foxl...unfortunately...I think you are stuck with me for a while eh?!
Thanks Kristy. Very happy and again...whatever works eh?
Kajoli...awesome! Tell me what you find!
Congratulations camusa!!! I always enjoy your posts and consider you to be very knowledgeable on the subject of ASD's. If you don't mind can you give us a flavor of BB's treatment/therapy plan? Thank you,[QUOTE=JJ Dad]Congratulations camusa!!! I always enjoy your posts and consider you to be very knowledgeable on the subject of ASD's. If you don't mind can you give us a flavor of BB's treatment/therapy plan? Thank you,[/QUOTE]
Wow...this is quite a question (and thank you for the kind words). I wish I had everything written down in front of me, but that is at home (and I am at work). I will try...
With regards to diet: I will elaborate upon this when I get home because I can tell you exactly what we use, but we have him on a GFCF diet. Supplements being used are Probiotics, some biomed interventions, Anti-yeast (though his diet is not yeast-free), Echinacea infused herbs, Cod Liver Oil and vitamin supplements. I am sure I am missing something so check back here later in the evening and I will post.
With regards to school interventions: He is in a "mainstreamed" pre-school class 4xq week with pull outs for 1:1 speech, 1:1 OT and 1:1 PT. The individual speech is three hours a week. OT-2 hours per week and I am unsure of the PT. This is supplemented by group therapies in the classroom as well for all three of these categories. 2 x q week he is in an intense program called the "SMILE" program. As he attends this in the afternoons there are only two other children in the class (we don't know if the other parents don't know that it is there, don't care for it, or just don't know what it does). It is a combination of ABA/RDI and Floortime. They have their own little cubes where they work on some drills for ABA and they also work with each other in floortime and some RDI activities. RDI and ABA are well-done here. We were going to have him do this 4 x q week (as we had him doing it 5 x q week in the summer), but that would have meant skipping his naps which he has proven he still really needs so we decided that if he was decompensating without the naps we needed to revisit the "full-time" status in the fall. The school was ready to give it to us though.
He has some sensory diet stuff going on at school including carrying a weighted stuffed animal. This seems to really help him with some of his impulse control. He would not tolerate the vest and he loves the animal. He also sits in a "bumpy chair" which really helps him sit still more often at school. We have ordered one for home.
I am positive I am missing some of his program here at school, but this will have to suffice for the moment.
Outside of school we see a private OT 1 x q week to work on sensory/vestibular/stimming or anything else of note. We are looking at adding a "listening program" to his diet. We also employ "brushing." They do a lot of work with a swing to meet that sensory seeking behavior and it really helps him to "smooth out" his thought processes once that need has been met. We also started him on the "chewy" in this program to meet that sensory need and have been using that often.
We pay for an ST to come to the home 1 x q 2 weeks though we are looking at phasing her out and phasing in a new, more intense one. She is wonderful, but he has kind of outgrown her.
He sees a naturopath for supplements and cranio-sacral 2 x q month. It used to be more often, but schedule-wise (and wallet-wise) something needed to be pared back. This happened to be my choice for paring back primarily because when he went he would not get home until 6:15 in the evening and then it was very difficult to get him back into the flow of things and he had meltdowns due to the schedule change.
At home...geez. We really treat him just as...our babe, but when I really think about it...the home has changed so much to mold around his needs.
He gets very little TV. One video in the morning and one after school. We keep him away from anything we deem conducive to scripting things that will not play into dynamic exchange and he gets no more than 30 minutes a shot (for a total of one hour a day). We phased in "Leapfrog" videos and he loves them. We did this as he was showing a real love of letters and numbers and before the videos he could count to 100 and knew his ABCs as well as being able to write (semi-legible) 1-20 and his ABCs. He is scripting these a bit though and obsessing on some aspects (when he speaks to me on the phone we always end up singing phonic songs for the past two weeks) so they need to be switched out. He also gets Blues Clues, Backyardigans, and Wonder Pets. Never "Diego" or "Dora" anymore as he scripted the crap out of them and not in a good way (save for the use of some of the Spanish words which he would use correctly, but right now...we need to focus on his English! He can learn Spanish later!)
We do some OT and PT at home (DW is a PT and a Traditional Chinese Medicine practioner). We do sensory with sound and a thera-ball. We do brushing. We do massage and adjust his ankles (decompression). Playtime is great and he loves puzzles of all kind (he can do 48-piece puzzles without blinking), he engages in pretend play with a dollhouse, a farm, etc... We do turn-taking exercises using a connect four set where the only object is for him to say that it is his turn to put in a checker and then I say it is my turn to do so. This is great. We also play bingo which he adores. Animal/number/shape bingo. Great for taking turns. He always says after the spin. "Whatchoo get Daddy?" and I say, "Thank you for asking, I got a purple diamond." He says, "Do you have a purple diamond?" I will answer "yes" or "no" and then he is practically begging with his face to be asked! "[BB], do you have a purple diamond?" He knows before he looks as he has been noted as having a photographic memory. He has both of our cards memorized before we even start so he will quickly answer yes or no and then place a chip.
We draw a lot. He used to ask me to do all the drawing, but now he does a lot by himself or he will ask me to draw it and then copy what I have done. This is done with watercolors, crayons, markers or at the easel.
We play "Cariboo" quite a bit though this has dies down a little. This is great for the recognition of "how many" and "which color." I don't really use the cards.
We have started playing the "cup game." Three cups and under one is a toy of some nature. He cannot touch the cups. He has to point to the one where he thinks the toy is. Then he has to look at my face to see if I nod yes or no. If I nod yes he can lift the cup and get the prize if I nod no he has to point to another one. This is a great game to play to have the babe learn to recognize non-verbal cues and follow directions...it is straight-up RDI. We do a lot of RDI at home getting him involved in everything from helping to mix batter for muffins to cleaning up dishes when we finish meals.
One of the MOST IMPORTANT things we do...we read with him...constantly...and he loves it. We have been doing this since birth (Oh...and music too) He loves books and HIS music. He learns the words. He points things out. He memorizes the books and reads them back (which we know is the beginnings of speech). He sings his little heart out and I just stare...I love that. Books are a real reinforcer and everytime he gets a full row of stickers for telling us he has "gone poops" and lets us change him with no fuss...he gets a new book. Great reinforcer.
Recently, with tantrums I had decided that I will treat him as an NT kid first and then, if I can discern that it is a processing issue, I will change the method. I have found this to be very helpful. The other night he had a dirty diaper when I took him up for bath. He would not let me change it prior to his "pre-bath reading." I said to him, "If you won't let me change your diaper...no books." He said, "BOOKS!" I snapped my fingers, pointed in front of me and said, "No books unless you get your butt over here right now and let me change your diaper." He played a totally NT little game. He started moving his feet, but held on to the wall so just his feet were coming at me! I choked back a laugh and said, "You get your whole body over here right now or no reading before bath." He said, "Reading Books!" I said, "Then get over here." He did. I have also been using more time outs. Not in a chair, but in his room where he can burn it off and he can come out when he is calm (as I am sure it is for you...his tantrums are like hellfire).
there is one more thing that I think is of the utmost importance. I try and be totally "Zen" with him. I can't always do it, but I try. I try and be where he is. I try and make sure that he knows that I am TOTALLY present and that I have no agenda save to be with him and love him. Even when we are practicing specific things I am not looking at a scorecard...I am just being and I am graced by being with him. I have found that if he even feels for a moment that I have some ulterior motive (like, let's get moving...time for bed) there is a tussle. I could elaborate more on that, but just be with the thought. Be Zen and you are Zen if you look for it you have already lost it. The mystery of life is not a problem to be solved, but a reality to be experienced. So it is with my son. He is to be experienced.
OK...There is so much more that we do with exercises for Speech and sensory, but I am imagining this post will take up the page!
I will try and update it, but please let me know if you have any other questions.
We still have such a long way to go, but I guess I take what the Doctor said as a "You're on the right track." We are not backing off any therapies or changing anything as this will always be a work in progress.
I need to add...we always treat him as our beautiful, darling son. He gets lots of kisses and hugs and he loves it. We have tickle matches and we play ball outside. We swim and run and wrestle. We play with puppets and kick soccer balls and swing and go to the park and the children's museum. We try and take him to restaurants (though this has rarely been successful we are going to keep trying). We take him shopping (and look to see if he gets over-stimmed). We take him to birthday parties and we basically go for whatever we can...as long as he will let us. He is incredibly social.
I think this has been a combination of both luck and hard work and there is still so much to be done and I know that my baby boy can do it!
OK...this has to be the longest post ever.
Much love.
Hi Cam - I'm so happy for BB!
Could you give more information about the "bumpy chair". I know about the cushions children can sit on, but is there an actual chair?
Also, did BB have gut issues? Is he also taking enzymes? The only thing I've done with my youngest bio-med wise is fish oil, organic food, and in the past cranial sacral. We haven't done the GF/CF diet yet because he's never had any gut issues, but I'm thinking about giving it a whirl.
Hats off to you and your Hero!!!!!camusa, thank you for all the information. What lead you to the biomedical innterventions? What I mean is how did you determine that it would be benificial and how did you determine which one's to use? I realize that my determination to do what is right by my son may skew my judgment of what is apporpriate to ask - so apoligize if this is "out of bounds".
Edit: I've been reading the long Best of Jenny Mc post. and have realized that the Biomed subject can be a sore subject. And might take a really long time thouroughly explain one's position - so please disregard the question. Keep up the good fight!!!
Excelente!!!!
GO BB, GO!
I hate to say it ... but I think in a few short years, "Ah'm gonna miss you, man!"
It is a "bumpy cushion." Sorry for that. It is called "Sit and Move."
No "Gut issues" that we know of, but we are always so careful with his diet.
No enzymes currently though they are slated for later discussion. We do use a yeast-free supplement called....ready for it? "Yeast Free."
He is going to amaze you even more when he starts school...that was when Sarah really blossomed:) Keep up the good work!
That's the best news I've heard ALL DAY!!!!Congrats!!!! I'm really happy to hear it
Wonderful news - I'm delighted for you!!
May i ask if this doc is against the idea of removing dx? I know a boy who had his dx removed and is now completely out of the woods by the looks of things. Why would a child have no signs of asd but still be on the spectrum?
This is great.. So happy for all of you,, We all work so very hard with our kids, it is great to hear of the improvements that he has made, Keep up the good work.TY!
I LOVE the lil party .... I'm having a little jig for you all too!!
Thanks again all.
To horizon...I actually do not know if he is opposed to removing the dx. It has not really come up yet though as he is still showing spectrum.
He still flaps his hands, has sensory issues, has stimming issues, processing issues, impulse issues, OCD attributes...the list goes on. It is a question though that I should definitely ask, but...not prematurely. The doc needs to know that I accept BB as he is (which I most definitely do) and that I am not pushing him to say that he is "off the spectrum."
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