DownSyn Forum

burnsun

CAN I SEND THE MAKERS A CHRISTMAS Present? They have given us one! (see below) We are on .5 mg in the morning & .25 at night. We are due for one last up to take it to .5 and .5 next week (I am worried it may be too much, but we have days where it is necessary and I am still worried about him and hurting new baby.......)

From my blog...... I don't x post like this too often........ but momof russell got to experience a night where he was beating on me at her daughter's party (though we pushed him a whole lot that day!)....... this was just a so cool moment

if this makes any sense to anyone..... I was so excited last evening at my four oldest and Jordan playing and interactions while we were waiting for Charlie Brown to start.

Devon snuggled with me on my bed for 18 minutes by himself and wanted me to hug and kiss him as we watched Mickey's Christmas Carol (on ABC FAM Channel)....... it seems like no big deal...... but when he came to us in May he was afraid of my bed, afraid or not able of being held for more than 30 to 45 seconds...... and watching TV was not something he would share........ WITH ANYONE!

Melea and Colin came in after they helped Kayla put Miranda and Eliza to bed....... they started jumping on mom's big bed (same one Devon and I are lying on) there was no move to flee.....no screaming...... no fear....... he just looked at me and moved closer......

The jumping and then trying to get Devon to play with them went on for about 11 minutes....... they would come sit next to him, stroke or rub his back and talk to him, then go jump some more.....They were not interested in Mickey or the Pooh special afterwards...... I think that is a mom thing).

During this time Adrian and Jordan and Kayla came to join us....... no hitting or pushing from Devon at his favorite target (Jordan) he did sit up and start paying attention to the others....... eventually he gave in and let Melea pull him into playing a little and one or two jumps.......

Then the coolest thing happened......... besides the 5 minutes of interaction with Melea and Colin, when Devon wanted to return to Mom he found his spot occupied (note .....Jordan jumped into my arms as soon as Devon vacated them) instead of hitting or starting to scream or all of the normal things....... he touched me and looked at me and then touched Jordan.... I reminded him "good touching" he wanted Jordan to move and his spot back ....... I tried to get him to go back to Melea or Kayla...... Devon was not interested so he shook his head no ....... pushed (in a nice way at Jordan twice more..... not movement from Jordan there........)

So Devon got off my bed, calmly walked to his room BY HIMSELF (again he usually has to have some one's hand or you need to be a step behind or ahead of him...... he rarely goes somewhere on his own .....imagine a really cute duck with an afro and the cutest eyes ever following you where ever you go)....... He waited at his door till Kayla got there and then signed all done and wanted to go to bed!

To me...... mom who some days has very little things that excite me greatly...... I just want to scream from the roof top..... how cool this was......

again if you didn't know Devon before, didn't know us and realize that Devon is 7 1/2 years old, you would wonder why this would excite a mom this much.......

BUT IT WAS SO DARN COOL TO ME!!!!!!! I WAS SO PROUD OF MY SON and how far he has come in the last 6 months and of all the other kids because they are trying to bring him further...... but they don't seem to push him any further than he can go at the moment! I love them and how they take care of each other so much!

So maybe we didn't all make it to watch Charlie Brown together for almost 35 minutes Devon interacted with me, the real world and his family! And my other kids showed me (again) how much they love and seem to understand him, and will be here for Devon however he needs or wants them in his life!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

LovelyKennedy · Posted: December 17 2008, 1:02 PM Post subject:

Your excitement pours through your post and I am so happy for you..wonderful news and you have so much to be proud of!

_________________
Beth Mom to Cameron 2/26/2000, Kendall 6/25/2002 and My Lovely Kennedy 9/10/2003(DS)

lespring · Posted: December 17 2008, 1:16 PM Post subject:

Oh Jane, that is SO COOL! I'm so glad you posted it, and so glad that the Risperdal is working for you like it did for us!

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

mary c · Posted: December 17 2008, 1:34 PM Post subject:

That is just awesome! So happy for you all.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]

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EAS1971 · Posted: December 17 2008, 2:14 PM Post subject:

Wow, that is SO cool! I'm happy for you, for your family, and for DEVON!! Think how much happier he must be!!! I met Devon on the 4th of July so I can attest to the fact that it sounds like he has come a long way.

Jane, how long before you saw major improvements? Oliver has been on Risperdal for 3 weeks. We've definitely see improvements. But nothing quite like you're talking about!!!!

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

burnsun

in number of vocalizations and the redirection of most of his hitting....... except for Jordan (his was closer to 6 weeks) and me .... my glasses have been thrown only about 2x a week now!....... but only one head push that I could not redirect to "good touching" in last week (so major improvement)

....... I quit fixing or buying new ones...... (I wear trifocals at about $400 a pop) I have just bought three different pairs of walmart / walgreens reading glasses and keep changing to what I am doing!

Ironically he loves my belly!!!! he rubs it and calls it baby all the time! He signs baby and has at least not bashed the "life like baby" I borrowed from the high school......... It has an abuse monitor........ I am hoping that he can learn to tolerate the baby in the sling and me taking care of him (provided of course the baby likes the sling..... I keep telling everyone it better cause I am running out of ideas!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Helen · Posted: December 18 2008, 4:29 AM Post subject:

What a wonderful update! I'm so happy for you. It truly sounds like Devon has come on so much. And I bet you're loving all the cuddles. And the interaction with his brothers and sisters. So exciting.

PS - Matt has started hugging and 'playing' with his sisters. It's so cute. But I'm still waiting for the day I can snuggle with him for more than about 1 minute! But I'm sure it will come!!!

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

Amy · Posted: December 18 2008, 9:00 AM Post subject:

Awesome! Hope to hear even more as time on Risperdal continues.
Keep us updated. It's very encouraging.

helen? Are you going to see if Matt is eligible for this med in the uk?

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

KatieB · Posted: December 18 2008, 4:08 PM Post subject:

Thats great about Devon, I'm so happy for you. Risperdol has made such an improvment in Mattys life, and ours. As for Sending the makers of this drug a Christmas present, can I go in on it with you?
Katie

moody216 · Posted: December 23 2008, 12:12 PM Post subject:

I totally agree about the Christmas present. Risperdal has given my little guy, Nick, so much! It is like his mind is so much clearer and he is so much happier! It is so great to read the stories of others that are soooo similar to ours. I am happy too!!!

_________________
Jen (mom to Nick, 6 with DS and Joey, 3)
http://mysite.verizon.net/vze119871/

ecki · Posted: December 23 2008, 7:42 PM Post subject:

Ditto on the Risperdal here! I can't believe how much more aware and involved Kayla is. DH showed her how to turn off the light in her room ONCE and she picked it right up! She is like a sponge right now, absorbing everything around her. And she is actually participating in Circle Time at school and playing with her sister. She BRINGS stuff to us and wants us to play with her. And she's stopped throwing her water bottle on the floor and sets it nicely on the table.

Now, if I could only get her to stop EATING all the time!!!!

_________________
Ecki

MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

Our Blog - Opposite Kids
Kayla's Story http://www.ecki.com/kayla/

Friend me on FACEBOOK (please specify Downsyn, so I know who you are!)

moody216 · Posted: December 23 2008, 8:09 PM Post subject:

I can't believe you mentioned about her throwing her water bottle on the floor! We have struggled with Nick to put his cup down nice for SOOOO long! That is so hard and yet such a simple thing. We repeat over and over, put it down nice...he usually does the second time. Since on the Risperdal though it has gotten better too.

_________________
Jen (mom to Nick, 6 with DS and Joey, 3)
http://mysite.verizon.net/vze119871/