Tuesday, March 26, 2013

Too Many Letters!

Last Friday we met with ECI to come up with an IFSP and it was determined that Camden will have a SST, PT, OT, SLP, and a dietician. To those of you who don't know what any of that mumbo jumbo means, I'm sure the dietician is the only one that's obvious. So, let me break it all down for you.

ECI (Early Childhood Intervention)- This is a state program provided to individuals from birth to three years of age with disabilities or developmental delay. Camden automatically qualifies based on the Ds diagnosis alone.

IFSP (Individualized Family Service Plan)- This is a plan that is written up between the parents and ECI team that outlines the specific early interventions that we will receive. Things included in the IFSP are: the child's present level of functioning and need, what therapists are needed, set goals, where and when services will be provided, who will pay, and number of days or sessions that are needed. These are updated every 6 months.

SST (Social Skills Training)- To be honest...I really don't know what this is about. It's the first I've heard of it. If you know, pease enlighten me!

PT (Physical Therapist)- Individuals with Ds have hypotonia (low muscle tone) which causes them not to develop motor skills in the same way a typical child does. The goal of PT is not to get them to achieve milestones quicker, but to get them to use the proper techniques so that there are not complications down the road.

OT (Occupational Therapist)- They will help with fine and gross motor skills. They will work with Camden to promote arm and hand moments that lay the foundation for developing fine motor skills. They also help with oral-motor feeding problems since hypotonia can cause weakness of the muscles of the cheeks, tongue and lips which can make feeding difficult.

SLP (Speech Language Pathologist)- These therapists will address the speech and language problems that are often associated with Ds. There can be challenges in the development of early communication skills due to hearing loss, oral-motor weakness, and degrees of cognitive impairment. They also assist with the feeding issues mentioned above.

Dietician- The only reason they want to add a dietician to our plan is because of Camden's present feeding issues. He does not eat a lot and we are interested in exploring other thickening options besides rice cereal. Though, I think we could do this on our own. Maybe they will have some good insight.

We didn't meet any of the therapists, it was more of a meeting to come up with a plan. In the next 2-3 weeks our service coordinator along with these other therapists will start coming out to work with Camden and teaching us exercises to do when they aren't there. I was so excited when Camden rolled over from tummy to back at only a few weeks old...but that excitement was soon squashed. I thought "wow, he's doing really great! A bit early even!" Then I started reading how a lot of babies with Ds do this early and it's because they do it the wrong way using the wrong muscles. So I guess it's not "true rolling over". Whatever, I still celebrated! We haven't even started yet and I'm already burned out. Maybe it's because I don't like the idea of Camden needing therapy. They do make it convenient at least in that they will come out to our house. They also incorporate the exercises into his daily routine so it's doesn't feel like its "extra" work. It just hurts my heart that this is one more obstacle that he has to face. This kind of thing is just another reminder that my sweet boy is "developmentally delayed". I know these therapists are knowledgable in what they do and can be a tremendous asset to us for years to come. I still don't like it. I guess it's time for me to get over it.

This is what Camden thought about it all...not much


  1. Me too, girl. Me too. Tell Camden that LP doesn't give a hoot about it all either. They can hang together. :)

  2. It's tough in the beginning. Just hang in there, it does get better. I'm honestly on the fence about EI. On the one hand I think it's great that they offer this for our kids and that this assistance will definitely help them as they get older. On the other hand, I'm torn about people seeing my baby as a bunch of problems that need to be fixed. But I know that he will need help with certain things throughout his life and I'm okay with that. Good luck with everything!

    1. I think it's good that these services are offered, but it's just one more thing! I know I will get used to it. God luck to you too Crystal!