This purpose of this post is to explain why we spend so much time in therapies, and what we do with that time. (In case you have been wondering)
When you have a baby with Down syndrome, the state offers a program called Early Intervention. The hope of these therapies is to teach early on those things that will benefit that individual's development and growth in a positive way the rest of his/her life.
Each state will pay for differing amounts of EI. Some will offer one therapist a month. Some perhaps every other week. Some states make you drive to the appointments, others send the therapists to your house.
I know that not every family with a child with Down syndrome decides to take advantage of these programs, and (in my humble opinion) I think it depends on some sort of combination of the following factors:
1. The quality and helpfulness of the therapist you're assigned.
2. Location of the therapy
3. Price of the therapy (how much will your EI pay for?)
4. How much social interaction your child is already getting with older siblings or daycare
5. The background of the mother. Has she raised other typically developing children? Does she had a history in education? Or special education?
6. Physical concerns (for example, when Addison had her g-tube, you can bet that the OT was my bestie as we taught Addison to eat for herself)
That's not an official list, just my thoughts.
The truth is, we see four therapists a week, and there are many that choose not to see any therapists at all. I'm not criticizing their choice or defending mine. This is simply what is right for my daughter. I'm not going to be arrogant enough to say what is right for other people's children. That's completely not up to me. The only choice here is the one that I make for my family. There are so many different factors at stake that it makes sense that different families would make different choices.
Do I wish that I had the confidence to say that I myself can teach my daughter the things that the four professionals bring to her appointments each week? Of course I do.
But I don't have that confidence or skill level, so I take advantage of every bit of help that is offered.
And I don't think that makes me a bad mother. Or an insecure mother. Or a mother that doesn't truly understand disability.
It just makes me a mother who is doing the best she knows how, using the resources at her disposal to raise her daughter to reach her full potential.
I'll admit, as a brand new mother at first the therapists made me feel inferior (but NOTHING compared to the NICU nurses). Starting PT at 6 weeks was daunting (especially when we came home from the NICU at 5 weeks). But as I got to know the therapists, grew in the ability to speak up for what I thought was best for Addison, and eventually got a team on board that I loved- it has been a golden relationship.
They respect what I think and say, and they suggest ideas based on their expertise- listen to what I think- and then adjust their suggestions and activities. They also give me connections to new playgroups, funding to buy Addison things (such as her iPad), reimbursement for such things as travel and hotel for Addison's surgeries, and an easy transition into her Preschool (coming up!).
I also found that I couldn't handle the four separate appointments, so I scheduled them piggy back.
Monday at 9am the Behavioral Educator arrives
We discuss strategies for Addison's behavior with her friends, work on her sign language, and talk through her daily routines. The BE helps me understand setting Addison (and myself) up for success in such areas as her asking for specific help or me teaching her specific behaviors.
9:30 the Speech Therapist joins us
The time is then dedicated to Addison's speech and signings using Prompts, songs (Addison's favorite!) and lots of object recognition. Addison didn't make her first little peep until we started with our SP. She has truly worked wonders with Addison. Because Addison really likes her SP, she will attempt new words and such that she won't do for anyone else. Combined with the BE, it's a fun hour and a half focused on playing with and teaching Addison.
Tuesday at 9 am the Occupational Therapist arrives
We work on self feeding, stacking blocks (and duplos), coloring, isolating finger use, playing with toys purposefully.
9:30 the Physical Therapist joins us
When then combine OT exercises with our PT. Standing to turn the pages of a book, climbing up on the picnic table to stack blocks, walking around while rocking the baby doll. And then the hard core PT starts with walking on different surfaces, navigating obstacles, climbing down the front steps safely, walking long distances outside.
Each therapist stays for an hour (at least), so each appointment includes a half hour of joint therapy and a half hour from each individual.
I'm not telling you out schedule to pat myself on the back because
1. All of these therapies are paid for by our EI program
2. They all come to my house and have agreed to my piggy back schedule (in fact, they've started using it with other families because they like the collaborative visits so much)
3. We have the best therapists that Addison LOVES and she learns new things every week while they're here.
4. Addison doesn't have older siblings to learn from.
5. I don't feel comfortable in my own knowledge and education background (High School Music Teacher doesn't exactly qualify me as a therapist myself) to shrug away the offered help and say I can do it on my own.
I have friends who choose differently because their options, choices and situations are different. I in NO WAY judge or criticize someone who makes a different choice than I do. In fact, I completely admire their choice because it's the right one for them and I hope someday to have more confidence as a mother to do more of this type of thing myself because let's face it- therapy is inconvenient.
But I'm honest enough to admit that because of our situation, therapy is our best option. I'm not in a place to say that therapy is useless to me and I can do it all myself, and I'm OK with that.
I am just doing the best I know for my daughter just like we all do.
In the world of therapy vs no therapy, this means different choices for different families, but isn't it that way for every choice of parenthood?