Devin'sMile ~ DevinSmile
...Because a journey of a thousand miles
begins with a single step...
begins with a single step...
...News... read all about it!
July 2018
So it's been a very very long time I don't update news on Devin here, mostly because of time and because honestly he's doing fantastic! (though if we're friends on FB you can see my updates on his page).
* Devin continues to have ABA therapy which has been wonderful - he now takes us by the hand to the bathroom and has connected that he can use the bathroom and hopefully one day soon be off the pull-up diapers.
* His forever school SFACS is on track to open the permanent campus next year so we're looking forward to that - the future is so bright with this school and us being a part of it. The amazing work and advanced way of thinking for our ASD kids is beyond anything we could have imagined for him.
* Unfortunately Devin had a breakthrough seizure in 2016 which extended our seizure protocol (medication) an additional 2 years - we are scheduled to do a new MRI and EEG this year to check if we can wean him off the meds (or lower the dosage); though at this time I'm in no hurry to get him off the meds since he's controlled and God willing will continue to.
* In July 2017 We took Devin on his very first flight! and to California (5 hr flight)!!! I was a little scared of his reaction but he did incredible well. He behaved, slept and overall had a great flight. We enjoyed being in California for the DUP15q Alliance conference and just being tourists hitting all the Cali places to see (Malibu, Hollywood, The Boardwalk, Beverly Hills, LA and even visited Disneyland!!!). We just had a wonderful trip and Devin enjoyed and behaved beyond our dreams. I have to remember to change my expectations of him since he always seems to blow us away - I think his goal in life is to surprise us all LOL.
Thank you for keeping up with us, until the next time! ~ Mom :)
December 30, 2014
Hi Friends and family! As we come to the close of 2014, I look back and realize what a hectic, exciting, full of changes year this has been! We had some little setbacks and yucky stuff thru this year but all the bad stuff was overshadowed by some wonderful events:
First the setback!
- • In May of this year we opted to put Devin on seizure medication after having another seizure. The heartbreak we felt in December 2013 with his first, hit me so much harder in May because although in my heart I knew it had started, I still had a little ray of hope that it was just a one-time thing. No such luck. Seeing your baby in seizure state takes you almost to an out of body experience – how can this be happening and me have no avenue to stop it, no way to control it for him?! So for his sake and our own, we put him on a 2-year cycle that I hope will be it! Fingers crossed and prayers to up above as I know that soon enough puberty will be before us and that’s a very crucial time for children with seizures
And now happy news!!!!
- • In July, after coming home from our anniversary cruise, we had a letter waiting for us from the State of Florida, in part it read:
I had to read this a couple of times to grasp it’s meaning… then I had to run and contact the agency as I had a very small window to in fact confirm we still needed the services (pffft as IF!). After almost 6 years on the Medicaid Waiver Wait-List, Devin was finally approved for services due to his disability (and nothing to do with our income). Thank you God, we can finally get the services that Devin NEEDS rather than just what we can afford to get by on. In August Devin’s services began to trickle in and by January (when he’s completely off my insurance) we’ll get the bulk of his needed therapies and services… it’s almost overwhelming to think about how much he’s needed and for so long and didn’t really have until now.
- • In October we got yet another happy news! After being on their wait list for almost 2 years, we were finally given the go ahead to start Devin at the South Florida Autism Charter School (SFACS). Although it’s been a little challenging, not only for him but us as well (new people, new routines, new everything!) we could not be happier. Devin is making such big strides we’re completely over the moon. The school is behavioral based and life skills geared so not only is he performing educational goals, his behaviors are being worked on and he’s learning life skills (the little things we take for granted, how to sit unaided, eating, participation, brushing teeth, etc)
- • In October, almost about the same time that we were approved for SFACS, we also got a call that my insurance finally approved ABA (Behavioral) Therapy. The combination of what they are working at school with Devin with the ABA at home (therapy 4 hours daily including Saturday) has given us (or at least me!) a renewed hope. Some of his strides because of it are:
- Eating on his own (partially – still getting help, but he’s understanding what he has to do and is receptive to it)
- Taking us to the bathroom (he’s realizing when he needs to go and we are in turn using less diapers… this is one of our “light-at-the-end-of-the-tunnel”!)
- More socializing (with his little cousin, with us, looking at us in the eyes with intent at communication and understanding this)
- Patience (Devin is now sitting on his own, unaided, in a chair, to play with his computer. He sits longer while interacting with a toy and that is huge)
We look forward to 2015 and what changes, surprises, and daily advances it will bring us. May you all have a wonderfully BLESSED New Year and may God Bless each and every one of you and your home. We love you all! ~xoxo
~ Mom
- Unfortunately we were not called for the Autism school (we are still on the wait list so fingers still crossed!) - Devin began the new school year at James Bright and seems to be adjusting quite well (although he seems to be hating the homework part!). He is now all set up with his chair in class and we are going to start the process of requesting a one-on-one aide for him (badly needed because of the size of the class)... the best thing about this, is that the request is being initiated by the program head and the teachers with our consent and agreement of course. Seeing a positive in every negative, this is definitely the best that could have happened.
- We've been working with a wonderful organization and have recently been told that Devin was chosen to be "granted" therapy for a year! Due to our insurance limitations we are short an OT visit a week and this organization will pick up the bill for the extra OT therapy a week! We are extremely happy, overjoyed, thankful and just so excited for the opportunity.
Devin has finally had the ASD diagnosis added to his current school IEP and I'm happy to say we are on a very very short wait list for our school of choice - South Florida Austism Charter School. This is such great news as this school is a wonderful fit for Devin's needs and it goes all the way to 12th grade (which means no more changing / looking for schools!). Praying to be in the school come this new year :)
~ Mom
In order to maximize the potential of speech theraphy, we now welcome Bianca; She will work with Devin for an hour... Mercedes will still come around to help.
Devin really loves having Bianca and Mercedes, since they love technology and iPads...
Thank you, talk to you soon! ~ Dad
Devin (finally) sleeping on his own!
- from setting up his big boy twin bed (changing mattress, getting sheets, comforter, pillows) to installing a camera (for the sake of us seeing that he's ok and staying in his bed), Devin has adjusted quite well.
From the very first night, he stayed and slept the whole night and still does... mommy still has to lay with him and snuggle for him to sleep but this does mommy good!!!
((joy in my heart)) :')
UPDATE ON MOMMY - Still not sleeping 100% due to the constant watching of Devin on the monitor, but getting there!
We got amazing support to help us meet our first Goal... Thanks to our wonderful friends and family, we were able to get Devin his iPad!!!
Devin is enjoying his Ipad to the max! He already knows what programs he wants and swipes to get to them! He's becoming very adept at using his index (pointer finger). yay!
~ Thanks, Dad
Speech - Finally!
~ happily Mom
OT Therapy for Devin
Our dearest cousin Belkis has chosen a career to help little ones... She is currently studying Occupational Therapy at FIU.
Recently we were blessed with Belkis' time - She took a break from her intensive studies and internship and is applying her learning with our precious Devin... Belkis is also showing devin how to use an iPad and he's become quite adept and "finding the boy" and other educational games.
We are very grateful for the additional OT therapy - Practice away! Devin can use all the therapy he can get.
