Preschool Part 1

Today was our big "phone interview" about Addison, Early Intervention (EI) and (gulp) Preschool. In PA, EI goes from birth to 5, but at age 3 it transitions from "in home" to "on site". Currently Addison gets OT, PT and SI (Special Instruction) a few times a month at home - or the park, at a restaurant, or any other setting she may struggle with. At age 3 it will then become an educational setting and look more like prepping her for what will be expected when she starts Kindergarten with a side of any PT/OT/Etc., provided that she qualifies for it. Or it could become on site where I'd just take her in for appointments for PT/OT/Etc. Just because she qualifies now, does not mean she'll qualify for preschool. Different assessment and rules. And yes I realize it makes no sense whatsoever as to why if she doesn't qualify for preschool but does qualify for PT & OT still that I would then have to take her in for her appointments vs her coming here. (And I know some places actually do on site therapy from birth, but that's not ever been the case for us. I am greatful for that.)

So today we talked about what I should expect in the coming months as they prepare for this change. And we scheduled her formal preschool eval. That will happen in Nov (when she is 2yrs 9mths). I will find out that day if she qualifies for anything further and how that will be handled. I cried at the end of this phone call because um, yeah...I am not ready for my babies to go off to preschool these two are not ready for preschool.

Now - some of you maybe wondering about Blake. As for now we have a few options. Currently he receives no EI services (he was discharged shortly after his first birthday). He part of what they call their monitoring program here in PA, where I fill out questionnaires periodically in regards to his development and if they see concerns they will offer an eval or if I have a concern in the interim I can request an eval. To date, he has had no developmental concerns. At age 3 we will have him evaluated under the preschool guidelines to see if he qualifies for services at that point (unless we have a concern sooner). 

If he does not qualify (and Addison does) then we have a few options. This all really depends on Addison though and what parts she is eligible for. A.) He could be allowed to partake in the same preschool/class as Addison and be the "class model". B.) They would go to separate preschools. C.) We can opt to forgo EI Preschool and enroll them both in a different preschool that is still a part of EI but also allows for community kids with/or without delays. Now should Addison NOT qualify for any services, we'll be looking into preschool at the same preschool as mentioned in option C or elsewhere.

So that's where we currently stand with all that. Did I confuse you? Because I am still scratching my head about some of this.

If you have experience with EI in a different state - how does it vary?

Early Intervention Update

Here in PA, they do reviews every three months and adjust services accordingly. The difference is that this review isn't one of those ones where they go through the whole assessment and say "Your child is this far behind" - this one is more like a meeting with the case manager, her "lead" therapist and me. We talk about her progress and what her new goals should be and then we plan.

So that happened on Weds. and we decided that we need PT again. Little Miss is having some balance issues, holds her left foot to the side when she walks, and seems to have some issues with her hips. Nothing majorly alarming, but something we wanted to have checked out, and see what we can do to help her. Some of this could be simply related to her vision issues, or just be a quirk she has right now and will out grow.

We also decided between Speech and Special Instruction. I asked for Speech but both OT and her case manager feel Special Instruction would be best suited for now. And we can pull in Speech later if needed. Addison does have some words, but (and maybe I am wrong) not as many as Blake. While it's hard to not compare them, it's just best to have these things looked at now and make progress on them. She is also "at risk" because of her Cleft Palate for speech delays so this is super important.

For now it looks like we are going to do PT once a month, Special Instruction twice a month and OT once a month. Re-eval in 3 months and decide from there. Should she still qualify based on her needs, within the next 3-6 months, they will start to transition her into the 3 year old program, which is more like a Head Start or Preschool type program to help prep her for school.

I am sure you've heard "most preemies are caught up by age two" and while that is true in some cases, we know that Addison still has some very mild delays. And ya know what, while I beyond a shadow of a doubt want her to "catch up", I am o.k. with this. Ok as in - I am glad we have the resources available to us to help continue to help her and nurture her learning so that she can continue to grow and progress. The important thing is that the gap between where she is and "should" be is getting smaller. It's just taking longer, and that's ok. She is so very smart, and picks up on things so I have no doubt that will continued hard work she will continue to blossom and develop.

One thing for sure is that we are going to have our hands full with her for sure ;)

Addison's EI Annual Review...

First a short explanation of EI (Early Intervention) - EI is an array of services for children from birth to age two or three (depending on your local program). In our case this is a community program designed to maximize the developmental potential of children while providing support to the family.

Addison and Blake both automatically qualify based on their history of Chronic Lung Disease (preemie lungs), Low Birth Weight and IVH (Intraventricular Hemorrhage) and will stay enrolled in the program until age three based on these things (in the state of Maryland). They were enrolled in the program upon their discharge from the NICU and an evaluation was done to determine their developmental level and what services they would receive, they are then re-evaluated at marked intervals to see if how they are improving and if any changes should be made to the services they are receiving.

Addison currently gets PT (Physcial Therapy) - twice a month, OT (Occupational Therapy/Feeding) 1-2 times a week and Special Instruction (think pre-school skills)- once a month, and recently had her annual review. It did not go as well as I anticipated.

She is currently 18 months old (actual age) with an adjusted age of 15 months. She is measuring mostly measuring in the 11-12 month range developmentally. In one area she did have some scattered scores in the 18 month range (Cognitive Skills), language she has emerging skills in the 14-16 month range and her Social Emotional Skills measure on target for her adjusted age of 15 months.

For some reason (denial) as her mom I felt like she was doing better then this. I mean the truth is, she is doing GREAT. She has made HUGE progress and CONTINUES to move forward. The hard part is that she isn't really closing the gap between her "actual" and "adjusted" age, and is lagging even further behind. It was also painful to hear that she most likely will face a learning disability and likely will not be able to keep up with her peers as well. All that being said, with appropriate resources and hard work, she will eventually "get" it... she is just going to have to work at it more. (What else is new, right? It's been this way since day one.)

I guess the thing is though, I just don't want to hear that my child is going to struggle. Nor do I want to SEE my child struggle. She is so bound and determined to do things and she doesn't give up when she doesn't get it. She just keeps going and gives it another shot. But to think of the things she may come up against in the future and know the pain she is likely to feel when she struggles to keep up, hurts. Every parent only wants what is best and wants to see their child succeed. I know she will succeed and I know she will work hard at it.

Fact of the matter though is that Addison has already defied the odds. She is my baby that wasn't supposed to live. The baby that should be showing signs of Cerebral Palsy and isn't. She is the baby who we weren't sure would learn to eat, she's eating. The baby who who we thought would never learn to suck from a bottle or straw, and she now proudly carries her own straw sippy cup. The baby who struggled to make sounds and words, and she has now has an emerging vocabulary. The baby who we wondered if she would ever walk, she is > - < this close! She is doing it "on her own time" not our time, and ya know what... I am ok with that.

Does that mean that I don't/haven't/or won't grieve for the delays or the heartache of hearing what "could be"? Nope. In fact I needed time to grieve for this as silly as that may sound. It's hard to describe. It's almost like this loss of innocence maybe? Like knowing she will struggle with certain things. And I have to admit, sometimes I feel like I have failed her, like part of this is my fault. I know in my heart that I have done it all, and done more then some EVER would. And I have done it will pride, and will continue to do it with pride. I am proud of every single, teeny tiny/huge, accomplishment she makes. Every.single.day. that I get with her makes me even more proud of her fight.

Addison, please know that your father and I will give our all to give you every thing you need to succeed. We will work together as a team to help you reach your goals and Blake will be there to help too. We've all got your back. Continue to be fearless and know that you will get there. Where ever there may be. And when you are ready to do it on your own and spread your wings, we'll be there too and will let you fly. But know we will always be a phone call, email, text, or Skype message away to do whatever we can. I have no doubt that you will one day be a highly successful lady. No doubt in my mind. I pray I am half as awesome as you baby girl. <3

I leave you with this... It says it all. Her - the first time she finished a whole container of baby food.
And Proverbs could not be more true. 

Milestone Monday...

What's New:

Blake now knows "Thank You" and he is putting words together like "More Cookies" or "More Milk" , he is also walking ALOT more. He can do the distance from the door to car without my help.

Addison is starting to say more words, consistantly. Eating has been pretty hit or miss. Today she also had part of her Early Intervention Eval....it did not go nearly as well as I hoped. I admit, I let it get me down. She is currently 17 1/2 months (actual)  / 14 1/2 (adjusted) she is measuring at 11-12 months in fine motor skills. (Fine motor skill is the coordination of small muscle movements which occur in body parts such as the fingers, usually in coordination with the eyes. In relation to motor skills of hands and fingers, the term dexterity is commonly used. / Source: http://en.wikipedia.org/wiki/Fine_motor_skill).

Looking at her adjusted age, it's not that far off, it's not even "that bad" for her actual age. But looking at her actual age, it's a tough pill to swallow. It's hard not to compare her to Blake and looking at her side by side with him, I don't see where she is that far behind him. At the end of the day, it's one person's view on her development and, heck it's a lot better then what we thought we were looking at. AND let's not forget, she has continued to grow and develop which is HUGE. I mean hello, let me remember this is my baby who wasn't supposed to make it! And she did... and she is THRIVING, and closing the gap between where she should be and where she actually is. I have no doubt that she will get there in time. That doesn't always make it easier though.

I can't wait to see what they both learn to do or say next....