Tuesday, September 15, 2009

It is good to have goals...

As part of the First Steps program, we get together with all of the therapists and our coordinator every six months. The technical name for the meeting and the document created is IFSP (Individualized Family Service Plan). The purpose is to evaluate Emily and to set some goals for the next plan (6 months). We did this in July and I have been meaning to share those goals with you ever since (clearly I am on top of things!).

These are the goals that were discussed:
Emily will initiate rolling to and from her back and belly with head, shoulders and hips as a means of mobility to both sides, some of the time
This has been an ongoing goal with the Physical Therapist in each IFSP since we started First Steps. We decided that we would drop this as an “official” goal during this plan. We will continue to work on it, but it will not be a part of the goal/evaluation process.

Emily will increase vocalizations/vocal play when engaging in movement play and family routines by demonstrating increased intensity and variety of sounds.
This has also been an ongoing goal with the Speech Therapist. Emily definitely has increased her vocal sounds and the intensity and volume, but this is an area that still needs work.

Emily will be able to play independently with her toys for short periods of time so that she can entertain herself
We determined that this goal has been met. Woo hoo! She really likes to play with the loud obnoxious toys over and over until Mike and I are ready to run screaming from the apartment, but still worth celebrating a goal that has been achieved!

Emily will hold her head steady while in prop sitting and while in adaptive chair with her head upright for 2-5 minutes without bobbing for improved trunk and head control
This has also been an ongoing goal with the Physical Therapist. We have seen some improvement with Emily’s head control, but this is an area that still needs work.

Emily will continue to grow well while increasing the amounts of solids she eats by mouth and liquids she takes by cup and decreasing the amount of formula she receives through her feeding tube.
This has also been an ongoing goal with the Speech Therapist and Nutritionist. Emily has definitely done well with the growing part! We will continue working on her eating more solids and handling liquids. We have been working on liquids through a syringe and she does well with it. We are going to increase that volume before moving to a cup.

Emily will develop increased prop sitting skills, with moderate assistance for 2 minutes, to promote upright posture for trunk and head control for interaction/communication with family and assistive technology.
This is a new goal with the Physical Therapist. We will work on different positions, using toys and assistive technology for motivation. The plan is to use her Hensinger Collar to help with transitions and sustained positioning.

Emily will increase her tolerance for belly time by remaining on the floor on her belly for 5-10 minutes with her arms forward and hands open to promote neck and head strengthening as well as weight bearing through her arms for postural control to carry-over in all positions.
This is a new goal with the Physical Therapist. This goal will incorporate belly time, side lying, getting Emily used to movements without an adverse reaction (she startles really easily when moved quickly).

Emily will bring both hands together with minimal assist, most of the time, so she can play with toys.
This is a new goal with the Occupational Therapist. This goal will incorporate ball activities, side lying, using adapted toys for motivation.

Emily will control opening and closing her fingers, most of the time, so she can purposely grasp and release objects to participate in fill and dump play.
This is a new goal with the Occupational Therapist. This goal will incorporate side lying, proper positioning in adaptive chairs, weight bearing and use of toys to motivate.

Emily will, when presented with 4 pictures that she can visually scan, choose the picture that represents the item that she wants using her voice output system with an auditory yes/no response.
This is a new goal with the Speech Therapist. A communication board was ordered for Emily. This will be used in addition to a switch with pre-recorded messages on it (that is the voice output system).

The IFSP can be good and bad. Since we are with Emily every day, we can easily forget what she has accomplished. So when we look at previous goals and see that she has met them or is closer to meeting them, it is a nice reminder of her progress. However, it can be hard to look at the goals that have not been met and realize just how far behind she is for her age. For example, the Physical Therapist uses a learning profile evaluation which rates Emily in various areas. This time around, Emily rated at the level of a 3 month old (she was 20 months at the time of the evaluation so that meant a 17 month delay). OUCH! Now, I realize this is just a number on a page and doesn’t change the person that Emily is. The number doesn’t change the things that she has accomplished. The number also doesn’t tell me what she will or will not be able to do in the future. It is simply a tool that is used to show that Emily still needs the services that are provided. However, knowing all those things still doesn’t make it any easier to read the outcome of that evaluation.

It amazes me how easily I can slip into denial on a daily basis about Emily’s needs and delays. Since I don’t spend a lot of time with other kids her age, I forget what they are able to do so easily - the things that Emily has to work so hard to accomplish. So I don’t really look forward to the reality checks that come with the IFSP process. It is necessary to see the reality of Emily’s needs, but not particularly fun. Thankfully, we really have been blessed with wonderful therapists who genuinely care about Emily. They work hard to give Emily the best opportunities for growth and development. It is comforting to know we have a great team on our side, helping to prepare us and Emily for her future.

One thing that we talked about adding to Emily’s schedule in the near future is a play group. She has to be put on a waiting list for now and cannot go until she is at least two, but I think it would be so good for her. She spends time with other kids in the church nursery, but this would be a bit more structured. The places where she will most likely go tend to cater to kids with special needs. I think it will be great for her to be around kids her own age who have similar abilities. She can learn how to interact with them and participate in the same activities. This will also help to prepare her for school next year, but let’s not speak of that! One step at a time…


Amy said...

Thanks for sharing...I can see where the goals are helpful and can provide both encouragement and discouragement. You are so right--the evaluations don't change the precious gift that she is or even who she is! On another note, the play group sounds great! Look forward to hearing how that might work out...

Stephanie's Mommy Brain said...

School next year?! No, need to speak of that at all!! (Nor of Ben starting Kindergarten next year!!)

That you for sharing the goals with us. It helps me better understand the stories you share about her therapy sessions.

Too bad we aren't close enough for regular "unstructured" play groups. My kids enjoyed playing with Emily and are always interested in how she's doing. Maybe we should have a play group in a couple of months? ;)

Kerrie said...

I'm so happy to hear she's meeting goals! Those meetings can be cruel reminders of the delays, but when you see how much improvement she is making over 6 months, it's a joy like no other!! Yes, it's very hard to see it when you are with her everyday, so the reminder is great!

I've heard awesome things about playgroup. I think Chatterbox has both typical and special kiddos.

I miss that beautiful smile of her's so much!! I can't wait to see her (and mommy and daddy!) again :)

Auntie Lisa said...

get crackin go meet all those goals. One day at a time kid, one day!

Katy said...

I live in denial land--heck! I think it's a good place to be. What's the point in dwelling on the things that Charlie can't do? Doesn't help a thing.

Michelle said...

Sounds like she has some great goals to work towards! and I agree about the IFSP and later IEPs - they are good and bad to take!