Skip to main content

Very exciting news...

The short version: Raya qualified for early intervention preschool. Yay! Now I can stop stressing about it and maybe one of my Raya-induced ulcers will go away... :)

The lengthy version:
One of my (many) sources of stress involving Raya for almost 2 years now has been wondering whether or not she'd qualify for early intervention preschool. To say that it's been an emotional roller coaster would be pretty accurate. When she was diagnosed with cerebral palsy, I thought that it meant she would automatically qualify to transition to preschool as well. When I found out that this was not the case and she actually would have to be evaluated, I thought for sure that she would not be going to preschool. At the time, she was only 10 or 11 months old and I didn't really care if she qualified for preschool or not. However, as she's gotten closer and closer to turning 3, I have come to understand why she needs it and the thought of her not qualifying has gotten scary. I have hoped and payed and stressed over whether or not her "special needs" are "special" enough.

Along the way, I've been given many, many opinions about whether or not Raya would qualify for preschool. Some opinions were welcomed because I felt that they came from people who had a professional background that gave them informed insight into the process. Others were well-intentioned from people who love her and either don't see or don't understand her developmental delays and just want her to be "normal". There have also been a few that were downright rude, condescending and judgmental, as if we're inventing or exaggerating these so-called problems to get attention or milk the system. No matter the source or the intent behind the opinions, it has been very difficult for me to keep a clear mind about this subject. I can't even begin to count how many times one little comment, whether from a therapist, friend, family member, or random stranger, has made me question again whether or not we are wasting our time and energy on therapies that she doesn't need and making a big deal out of quirky behaviors. Further compounding that difficulty is the fact that aside from generalized descriptions, nobody could ever give me specifics on what the evaluators would be looking for.

All along I've hoped that Raya would qualify for preschool but have also not been able to shake the fear that she wouldn't. If I didn't feel like she needed it, I wouldn't have worried about it but she DOES need it and I am and always have been a big worry wart. The closer we've gotten to her 3rd birthday, the harder this has been for me. As her mother and primary caregiver, I see things in her at home, at OT, and in different settings with her that are difficult to explain. The more I've seen these characteristics, tendencies, and behaviors emerge and evolve, the more strongly I've felt that in order to be able to be successful in her future academic life, she NEEDS to spend time learning to cope with the classroom environment and continue in her therapies. Thinking about it has been a constant source of stress for me, especially on her bad days. Then add in recently moving, my own (very time-consuming) schooling, the occasional photography job, 3 other kids, a husband, and a house that doesn't clean itself and you've got one frazzled stress case of a momma.

Thursday was our meeting at the school she was evaluated at to go over the results of the eval. I was almost sick to my stomach about it all morning because I knew if they denied her I'd have to appeal and have a whole new eval done. Raya was really tired yesterday and fell asleep on the way there. I thought for sure they were going to tell me that she didn't qualify, which meant that I would have to unleash the mama bear in me and appeal to have her re-evaluated at the school we're now living in the boundaries for. I tried to call a dear friend on my way there so she could give me a little pep talk but couldn't get a hold of her so I just talked to myself instead. Ha ha. :) I felt a little bad for being in the mindset of preparing myself for battle, but unfortunately when it comes to things like this, that's just what you have to do.

We dropped Kaida off at a friend's house and before we even got to the freeway, Raya was out cold. She'd been crabby all morning so I was laughing a little at the thought of her going into the meeting like the angry little darling that she often is when she wakes up from a car nap. She must have been REALLY tired though because I got her out of the carseat and put her in her new-to-us stroller that I bought off of Craigslist (Britax B-Agile, LOVE it!) and she didn't wake up. She stirred enough to jabber something at me about dropping her toy, which I put in her hand, but then she went right back to sleep and slept until we got home.

We walked back to the same room we had the evaluation in and I got Raya's feed started. I had meant to get it going before we left home but we ran out of time (big surprise there) and she's been fighting me on connecting her feeds lately anyway. The ladies we were meeting with had just finished up lunch and were still getting papers together so while they did that, I poured a couple cartons of formula in, untangled 15 feet of tubing, connected the extension tube to her button, and fired up the feeding pump.

So here are the results. In order to qualify, Raya had to score below a 76 in two or more areas. Anything between 76 and 115 is considered average. The areas evaluated by the school psychologist were daily living skills, cognitive development, social/emotional development, motor skills. She also evaluated behavioral concerns but that area can't be scored in children under the age of 3. She fell below the average range in daily living skills, social/emotional development, and motor skills. (This was when I breathed a sigh of relief because I knew she was in.) Evidently not eating and not being potty trained really does factor in. :)

The physical therapist assessed stationary, locomotion, and object manipulation to come up with a gross motor quotient. In the area of stationary skills ("a child's ability to maintain control of his/her body within its center of gravity and retain balance") she scored in the low average range. What can I say, she was having a good balance day that day. In locomotion (ability to move from one place to another) she also scored in the low average range. Again, she was having a good day and didn't trip and fall or run into anything while we were there. I still feel like this was a pretty accurate score though and one of the areas where we can be really proud of her and ourselves (Donny, me & her therapists) for the great progress she's made with PT & OT. In the area of object manipulation, she scored below average.

One thing I liked about the PT's report was that she gave me specific examples of what children in the average range can/should be able to do and which of those things Raya is unable to do. Some of those things that she was unable to do included standing on one foot for 3 seconds, standing on tiptoes for 3 seconds, walking backward 10 feet, jumping down from 16 inches, running 30 feet in 6 seconds or less, walking on tiptoes, throw a ball underhand, kick a ball using opposite arm & leg movements, and throw a tennis ball overhand more than 5-6 feet forward. Evidently those are all things that kids her age should be able to do. I thought it was interesting that she couldn't walk on her tiptoes.

Anyway, she did not have a qualifying score based on the PT's evaluation but she still recommended that the IEP should include the importance of monitoring her closely on the playground/play structures because of her lack of a sense of danger.

And last but not least, the speech therapist's evaluation was interesting as well. She had told me at the evaluation meeting that Raya was definitely not going to qualify based on speech delays because she fell into the average range in both auditory comprehension and expressive communication. Because of that, I didn't expect her to say that there were any delays or concerns with Raya's speech. In her report, she noted that Raya does have some articulation issues that should be addressed with speech therapy. She also acknowledged that Raya often drops off the last syllable of words and that her articulation decreases when she connects multiple words together. It was another big relief for me to hear her say all of that because I've noticed those things but anytime I mention them to anybody else, it seems to get brushed off as being typical for a child her age. I told them how in the weeks following Raya's evaluation she had a huge flare-up of her sensory issues and that it had greatly affected her speech, and specifically the articulation & syllable reduction that the speech therapist had mentioned. It was really validating for her to tell me that she had noticed those same things even though Raya would barely speak above a whisper the whole time.

So how do I feel about all of this? I almost got tears in my eyes as they were going over the summary report. Their descriptions of her were so accurate and made it very clear that she DOES have developmental delays in some significant areas. She may be able to walk and talk, but that is just a drop in the bucket. On one hand, it's very validating to have the evaluators see what I see (and more that I didn't see) and I can finally tell myself once and for all that I'm really not crazy, my kid does have issues. On the other hand, I don't want people thinking she's any less of a person because she's not within the "average" range in some of the less obvious areas of development, nor do I want people judging me as a parent because of those things. (i.e. she's not potty trained, doesn't eat, has meltdowns, etc.) Part of me was jumping up & down excited that she qualifies, but hearing them put her developmental delays into words (which I have struggled to do) was like a little knife to my heart. I am SO grateful that she has been able to qualify for the therapies she needs (even if I couldn't always understand or explain why she needs them) but it makes me so sad that she struggles so hard with things that should just come naturally. I know that a lot of what I put on the blog is the hard things and the ways that she tests me, but I want the world to know that no matter what I might say when I'm venting my frustrations, she is a sweet and wonderful girl who I have no doubt will go on to do great things in her life. Continuing with the services & therapies she's already getting as well as introducing preschool and speech therapy and (hopefully) finding a new feeding therapist will set her up for success in her academic career and life in general and I'm so grateful that there is so much help available for her/us.

Comments

  1. Awesome! That is truly amazing that the evaluator was able to observe all those things when it sounded like the evaluation itself didn't go that well. Especially the speech issues. You seem like a very in-tune momma!

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …