Thursday, July 9, 2009

E plus I times X equals GUILT

Early Intervention therapists come to our homes weekly, bi-weekly, or even just monthly. They train our babies to develop their gross, fine, oral motor, and cognitive skills by conditioning their brains to learn movement patterns, sensations, and organization. They also teach us how to perform these specialized therapy activities and recommend that we do them on a consistent basis.

Daily... I am supposed to do oral motor stimulation prior to each meal and to fit in a 20 minute physical therapy session. I am also supposed to expose my child to classical music and signing throughout the day. Weekly... I am supposed to carry over what we do in pool therapy and to practice several activities suggested by a special education therapist and a teacher of the visually impaired.

I admit, I am already overwhelmed with multiple children, a job, a husband, a couple of blogs, a house to keep up, two moms groups, church... etc. And, some days, ok, maybe lots of days, I could easily not do any of the recommended EI activities. When this happens, guilt sets in and I envision my daughter never becoming independent because I didn’t find time to roll her around on a mat everyday. Oh, yes, I beat myself up for being an EI slacker mom.

Once the guilt takes hold, I start to wonder if EI even matters at all. Wouldn’t it be easier to just free myself of this cruddy feeling by axing EI altogether? What good is a bi-weekly 20-minute splish-splash in a pool anyway? Does it really make a difference if I stick my fingers in my daughter’s mouth for five minutes before lunch? Am I wasting our therapists’ time and our state’s money?

I confessed my shortcomings and fears to our physical therapist. She reiterated that, “It matters. Even if it is sporadic, it makes a difference.” Ok, so it’s worth it but how do we rid ourselves of the guilt and manage to get in more therapy?

Get Some Helpers
Enlist the help of siblings or other family members. A brother or sister as young as five can be taught to tickle a baby’s lips and cheeks with a Nuk brush. Siblings can learn beginning signs such as mom, dad, more, drink, etc. and can use them regularly with the baby. You can make a game of having all your children bombard the baby with specific sound combinations. For example today can be “ga gu, ga gu” day. (Grandparents, cousins, or any other family members work well too :-) And do not feel bad about involving other family members. You would think nothing of having one typical sibling help another with studying for a spelling test or practicing catch.

Call your local high schools to see if there are any responsible teenagers who would like to earn volunteer service by coming to your home once or twice a week to carry out therapy activities with your little one. Check with local colleges to see if there are students in an Early Childhood or Special Education programs who could benefit from the opportunity to volunteer in your home working with your child. You can show the student volunteer exactly what you would like them to do.

Make Routines
Devise ways to fit therapy into your everyday baby doings. Have your child’s therapists create some routine-based activities for you. For example, after each diaper change I have my daughter do two rotation sit-ups (a modified sit-up where she pushes up from her side into a sit position). When I dress her in the mornings and put her jamies on at night, I do a couple minutes of body massage. At lunchtime, I put her in the highchair a few minutes before her lunch is ready. While she waits, she chews on a vibrating teether or plays with her Nuk brush. By the time I get her lunch set up, most of her oral stim work is done already! This is formally called the routine-based early intervention model. Your therapists will know how to implement it into your individualized daily routine.

Have your child’s therapists write down a step by step therapy routine that you can follow for specific skills you are working on. Keep it short and simple. For example, have your PT write up a 15 minute warm up, skill practice, warm down activity list for you to use when you are working on a specific gross motor skill. Having a cue card to help you run through the moves will help you get it done.

Schedule in one or two therapy sessions a week on your calendar for you and your baby. Treating this like a weekly appointment may be what you need to make it happen. Completing a session with your baby even once a week will help you reach your baby’s EI goals and will leave you feeling like you have really accomplished something.

Ditch the Guilt
Feeling guilty about not carrying over early intervention therapies is a good sign that you care deeply about your child’s success and your role in it. So you didn’t do any therapy today... or yesterday. There is nothing you can change about that. Don’t go feeling bad. Remember that those days were filled with smiles, chattering, hugs and kisses, good food, and plenty of goings on for your baby’s edification. Tomorrow is a new day and who knows, you just might find yourself rolling your baby around your livingroom on a big plastic tube!

Guilt That’s Really Grief
I sometimes think that no matter what I do to help my daughter, I might still suffer a tinge of guilt wondering if there was something I missed. This feeling of guilt, brought about by skipping a day of therapy or even avoiding therapy, is really a “chronic sorrow” moment. Chronic sorrow is a normal ongoing part of the grief process. It is the occasional revisiting of grief when reminded that something has been lost. Catching myself slacking on therapy is a trigger that reminds me that life with my little girl is not typical. It is a reminder that things are tougher for her, a reminder that she has a disability. Once I realize this feeling for what it is, I give in to my boo-hoo moment, cry a few tears, and get back on track.

Your Turn
Have you got any ideas on how to integrate EI into everyday life? Got an EI slacker confession you want to make? Got some encouragement for us parents who aren’t sure what we’re doing is making a difference? Please take a minute and share it.


  1. A very good and important post. As the mother of a big family, I could not always do EI activirties with Ricki , or when older, practice reading with her. But that is NORMAL.
    A few points:

    1. To any readers who might think "Why do physical therapy at home? Or why even go? So she'll walk later..."
    EI AND PHYSICAL THERAPY IS NOT ABOUT GETTING THERE QUICKER. IT IS ABOUT TEACHING THE CHILD THE CORRECT WAY TO DO THINGS. If a child does not receive (and hopefully get SOME practice at home) therepy, they can sometimes sit/stand/ etc. in an EASIER YET WRONG way. This can then lead to the child never being able to do that skill, and following ones, properly.
    2. TONS can be fitted in the regular as-you-do-things routine.

    3. Guilt can be bad, but a bit is good. You have to find the balance between not driving yourself crazy and not ignoring your child's needs.....

  2. "Devise ways to fit therapy into your everyday baby doings.". Many a time our Therapist would say that the most important thing was for our child to have a rich life, exposed to a variety of stimulating activities. We rarely had to do specific routines for periods of time- it was most helpful that a) I had someone to talk to who was an expert on child development and loved talking about my child for as long as she was there. b) someone who gave me ideas and feedback about how my child was doing. c) someone besides my husband who would crow about the least little success! I totally get the chronic sorrow feeling too but I don't see it as something lost I'm missing, just about how hard it is- and then I realize everyone's life is hard in different ways and I am a very lucky person in many ways! Thanks for making great points!

  3. Hi. Great post!
    I love your honest perspective. Your love for your children rally shines through.
    I wanted to share a video that Jack sent us, about how he used his love for music to help a special needs boy perform in a talent show. Really great story:

    Hope you like it. Have a great day!
    -Mike / mutual of omaha

  4. Good advice from Rickismom. Absolutely right about therapy for teaching the correct way of doing things, not how quickly your baby will be able to do it.
    I only have Matthew, no other children right now, so I don't have little helpers. My parents live half way across the globe and everyone else is busy with their own kids, etc. So I had to do it all during the day when my husband was at the office. I got burned out, tired of donning the "therapist hat" when I set aside time everyday for a "therapy session" in between EI visits.

    I learned to incorporate 70% of therapy and exercises into everyday routines such as diaper changing, mealtimes, bath time, etc. There are some things you still have to set aside time for but once you get into a routine, it's much easier.

    I also learned the repetition is KEY, more important than the duration of a single session.

    It's also important to make time for yourself. Go out with a friend or alone. Recharge.

    And as Rickismom says, find that balance for yourself. It's diffferent for everyone.

  5. I know that the EI is about teaching the correct way for doing things , but we have found despite following the physio programme for rolling over, sitting up , crawling etc - Rachel never rolled, sat up in entirely wrong way , bear walked not crawled , walking at 2 yrs ..... has EI helped here or would she have done it all despite it esp as she never used any of the correct ways ?

    I use everthing we do together as an opportunity for growth & learning. We do more formalised activities after breakfast whilst in the high chair. Rachel is used to this routine & looks forward to choosing activities.

  6. I keep a data sheet of all the things the therapists ask us to do at home. I check things off with plus and minus marks so i can track her progress. Its so fun when I see a long row of plus marks because I know she's learned a skill and we can work on something new.

    She's an only child which makes it easier, but it's still a reminder that we have to work harder than a typical baby might. Like you, we sniffle for a minute, but we get back to the reality that she's a beautiful girl and she's blessed our family.

  7. I just wanted to say that I love this blog! Your posts are so informative and right on. I also struggle to get my EI therapies in every day. Thanks for the great ideas on other ways to get them in.

  8. Honest and refreshing.


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