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So, what’s my blog about? A little bit of this, a little bit of that, tons about Jackson and a sprinkle of Spina Bifida awareness. Why? Because that’s our life and we want to share it with you. Hope you enjoy!

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Here's What's Happening in Jackson's World: 18-Month IFSP Meeting

We had a regularly scheduled IFSP meeting at the beginning of January to discuss the past 6 months and make a plan for the next 6 months.  All of Jackson's therapists along with his Service Coordinator and a Early Intervention rep were in attendance.

I thought I'd share some of his accomplishments since his last IFSP meeting:

Occupational Therapy -
  • Successfully puts various objects into a container
  • Scoops and feeds himself with a spoon
  • Consistently crosses midline
  • Drinks from a sippy cup
  • Uses intentional gaze to get what he wants (ie, food vs. drink)
Physical Therapy -
  • Showing significant improvement with endurance for sitting
  • Fairly consistent lateral protective reactions (catches himself from falling sideways when sitting) but still needs assistance with backwards protective reactions.
  • Rolls with ease in both directions
  • Has begun to commando-crawl
  • Shown some progress in pushing himself into a sitting position but still unable to do on his own
Special Instruction Therapy (SEIT) -
  • Beginning to use several signs consistently ("more", "please", "ball", "go", "open")
  • Imitates familiar gestures (banging toys together, "so big") and engages in imitation during song play
  • Purposefully places objects but needs cues to use more refined, fluid movements
  • Uncover a partially hidden objects with cues
  • Blows kisses
  • Will drop objects systemically (ie, into container and then dump)
Overall, he's still considered to be at a 33% delay in most functional areas but he is definitely making improvements.

Here are some of his goals for the next six months:

Occupational Therapy -
  • Improve functional use of hands (decrease associated movements, transferring objects between hands, stacking blocks, etc)
  • Use a spoon and fork independently, drink from an open cup
Physical Therapy -
  • Develop posterior protective extension reactions (catch himself from falling backwards)
  • Sit Independently
  • Transition prone to sitting
  • Creep independently
  • Independently propel his mobile stander 15 feet to allow him to engage in play with others
  • Propel his wheelchair with occasional assist to allow him to participate with his peers/family at family functions
Special Instruction Therapy -
  • Comply with simple commands and perform requested actions
  • Demonstrate a developing vocabulary by pointing to named objects, pictures, clothing items, etc
  • Use at least 6 signs consistently and meaningfully
  • Participate in pretend play activities
  • Imitate gesture and play skills (wave bye-bye, making farm animals eat, etc)
  • Participate in book related activities (scanning, turning pages, looking at pictures, pointing to pictures, etc)
  • Use both hands in midline (one holds, one manipulates)
  • Participate in nursery rhymes, songs and fingerplays
Phew!  He's got a lot to work on!  ;)  Not really though.  When you think about it, a lot of this stuff is achieved during play time.  So, he just needs to keep playing.  Tough life, huh?

We also talked about the status of his wheelchair, stander and bath chair.  There wasn't a lot of updates at the meeting but we've since been told that everything is "in the works" and he should have them all within the next couple of months.  We've also got approval for extra "extended" visits (60 minutes versus the typical 30 minute sessions) with his PT once the stander and wheelchair arrive so that she can work with us on them.  Therapy sessions will continue as is (2/week for PT, 2/week for Spec Instruction and 1/week for OT with 6 extra extended visits for PT for this next IFSP period). 

We also discussed getting a new OT and definitely NOT because we wanted one!  Jackson's current OT got a job elsewhere so we needed to find a new one.  Jason and I wanted to keep the services with CAFL but our EI rep was of a different opinion.  She thought it would be easier to change the OT to Korpiel as that is where all of his other therapists (and service coordinator) are from.  No offense to the therapists that work with Jackson on a regular basis (as we really like them and they are doing a great job), but we feel that having everyone that's involved in his care come out of one company puts us at an unfair advantage when trying to advocate for Jackson.  We liked the diversity and wanted to keep it that way.  Well after some awkwardness at the meeting and some other personnel issues at CAFL, Jackson has a new OT (from CAFL).  It's started out a little rocky as she had a full caseload before she took on Jackson so scheduling has been a little tough.  But, after meeting her on Friday we feel we made the right decision.  I think she'll fit in well.  After all, she does come highly recommended by Jackson's now-former OT.  ;)

Therapy time with his new OT
The last topic of discussion was Speech Therapy.  As you may recall, Jackson did qualify for Speech Therapy but it was decided that starting out with Special Instruction would be more beneficial to him.  That had never sat well with me.  I mean, if he qualified for speech, why wasn't he getting it?  It was discussed at this meeting that Speech Therapy (ST) should definitely be introduced but maybe not until the next IFSP meeting (6 months from now).  And this is for multiple reasons.  One, SEIT is kind of the prerequisite for ST and because his SEIT has only been working with him for a few months it may be premature to add another therapist.  That, in combination with getting a new OT and having therapists at the house already 5 times a week, it might be overwhelming for not only Jackson but Grandma and Grandpa too.  So, we are going to see how he's doing in 6 months and visit it again.  I also want to visit the idea of Jackson attending Happiness House and also getting some sort of water/horse therapy into place for him.  It was suggested by his developmental NP that both of those therapies would be very beneficial to Jackson.

So, long story short - Jackson is making progress but is still delayed.  No biggie though.  Some progress is better than no progress!

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I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.


Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.


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Robin
Gorham, New York, United States
I’m a notorious procrastinator, a Martha Stewart wanna-be (minus the orange jump suit), and I have a high attention to detail, although some people might just consider me a control freak, perfectionist pain-in-the-arse! Oh yeah, and I’m a tad sarcastic. I've been married to my best friend for 5 years and we have one amazing little toddler, Jax. Our other "baby" is a 4 year old Great Dane who thinks he's a lap-dog. All in all, I love my life!
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