Giving credit where credit is due

Goldie had her quarterly eval this week. I have to say it was fabulous! She has made so much progress in the last 3 months. She now knows over 100 signs and her speech is increasing slowly and steadily. Her fine motor skills have taken off and she is completing puzzles on her own along with beginning to draw. I could go on and on!

So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"

Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.

Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!


Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?

Transition - The First Meeting

This week was the first meeting in Goldie's transition from home based to school based Early Intervention services. I still remember the very first IFSP meeting. I think she was only 5 weeks old. There was a woman named Brenda asking me what my goals for Goldie were during the first year. Who ever thought I would be coming up with goals for our new baby? All I wanted to do was feed her and take a nap. Somehow, thought started forming about what I wanted her immediate future to look like. I went back through 8 years of being a mom and watching my other babies grow and decided that is what we would aim for. One thing I specifically remember telling them was I wanted Goldie to eat real food. Not baby food, just like my other kids did. Brenda looked up at me to see if I was serious. Then she said " Well, we'll have to make sure she can do it safely." Goldie did accomplish this goal. I had to compromise a little along the way, but not much. The lesson I learned is that you can't be afraid to aim high. If I had been wrong it would have been ok. We would have given Goldie the support she needed and adjusted our expectations. But, we should always give her the chance to succeed.

Now that I've gotten way off track from my original topic... I admit I've been pretty worried about how this transition will go. You just get used to dealing with one system and now its time to move on to another. I've also never liked the idea that my daughter is part of "the system". I've always enjoyed my parental autonomy and really resent anything that infringes on it. I was laying in bed thinking about how I could be at peace with this process when I realized the obvious. Hank and I are still her parents, we are still in charge. We have the final say in what services our daughter receives. If we don't like what Early Intervention has to offer, we have choices. We can even choose to take her to private therapists and pay for prek ourselves. We are not at the mercy of the system.

I woke up in a great mood the day of the meeting. I made a list of all Goldie's strengths and the things she is still learning to do. (Good thing, because I was asked for these) I also wrote down some questions. Hank was watching the girls, so I went alone. This is fine because he tends to be too nice to people. He's great at compromise and I'm great at sticking to my guns! The meeting consisted of myself, Goldie's current SC, and a man whose title was Early Intervention Service Coordinator. I guess he's going to be the new SC.

It went about as I expected and he wasn't able to answer all my questions. I give him props for admitting that and not just giving me bad information. He asked what we had in mind for Goldie. I told him, "We decided that the Fall after she turns 3 would like to enroll her in a typical preschool setting." That was followed by him trying to convince me to enroll her in the special ed pre-k in March. I simply repeated "We won't be sending her anywhere until the Fall after she turns 3." He realized rather quickly I wouldn't be changing my mind. I did explain our reasoning (new baby), but he just raised his eyebrows and went back to writing. Whatever. I guess he took it personally.

Next came the question of how will Goldie receive services if she is not in pre-k or daycare. He didn't know and told me to ask at her eval in January. Wrote that ? down. I also have to ask how they will implement her oral motor therapy in the classroom.

Then we talked about typical pre-k options. Not far from us is a typical preschool that has slots for students with IEPs and has staff from EI in the classroom in addition to their own teachers. I had already heard about this option and we are very interested in this for Goldie. My big question is how do I make sure she gets one of those slots? I was told "We just put her in there" Yeah, right. I don't believe that for a second.

Finally, came the paperwork. I was asked to sign a paper allowing them to bill Medicaid for Goldie's services. I asked if this would cause a problem if we pursued private therapy. He said "no, well it shouldn't, unless their billed on the same day for multiple services." I said I would bring that form back later. I could have signed "No" and her services would still be free, but I wanted more time to think about it.

Overall, I wasn't impressed. I had some big safety issues with the building. Goldie could have easily walked out the front door. (I know people who work there that have found kids wandering the building) There was no interest in Goldie as a member of our family. There was a brief explanation of why inclusion is a great idea, but segregation (my word, not his) of children with special needs is sometimes necessary. Then it was my turn to make faces.

The best part of the day though - while I was gone Hank decided to play outside with the chainsaw so the girls were on Goldie duty. They got her to sleep for a nap, fed her a snack, and took her to the potty. Where she did number 1 & 2! (Now that's a whole post for later.)

Transition - Getting Ready

Next week is the first meeting in the transition process for Goldie. She won't be 3 until March and right in the middle of now and then I'll be having a baby. I've been dreading this since our first IFSP meeting. Honestly, I would like to say "no thank-you" and go back to having a "normal" life where I don't have to deal with THE SYSTEM. I think part of the reason I find this so daunting is that none of my kids went to preschool. I was the lone mom in my circle of friends who didn't believe in preschool. I do believe most parents provide all the enrichment any preschooler needs. They have many years of school ahead of them, why let them get burnt out before kindergarten? Childhood is short and I want my girls to have as much of it as possible, TOGETHER. The day will come when they don't share a roof over their heads, let alone a bedroom and these years will be what bonds them for life.

I was all set to send Goldie off to school when she turned 3, sort of. Then, sometime in the last year I started thinking that everything I believed was best for my other children could still be what's best for Goldie. Does she deserve less time chasing chickens and making blanket forts because she has a disability? Is there anything preschool will teach her that I or her siblings can't?

Of course, she does have different needs than her sisters. Can I meet them? Yes. But, I know when I need help. Hank and I talked and (as of now, plans may change as we get more information) we will not be sending Goldie to pre-k in March. Our plan is to send her to a typical pre-k, twice a week, in the fall, following her 3rd birthday. I don't think its wise to send her off to school less than 12 weeks after getting a new sibling. I know from experience that can be a rough time for the youngest.

This plan means we have to decide how Goldie will get her speech and OT services. I thought I had that figured out, until the Service Coordinator was telling me the laws changed back in January. I've been told we can bring her to the school, just for her services. I've also been told the state doesn't allow any one-on-one therapies. Her current OT and ST both feel that all of her needs will not be met by the school district and that she would need private therapy in addition to what the school provides. Fortunately, a pediatric therapy center opened up a mile and a half from our house. Still, my head is swimming with the different choices and if they are even choices we will have. I hope to have some answers next week and a clearer picture of what will happen when she turns 3.

On another note, Goldie met an OT goal this week. The one were she learns to remove her pants. She even went above and beyond and took off her diaper. Sorry, no picture! But, here's another cute one I had to share.



I should add that is a water baby in the sling. It is much heavier than our other baby dolls and is a sneaky way to help Goldie with her arm strength!