It's been such a long time coming, a long road, but the process of getting Kaelyn's school district evaluation is now over and her IEP (Individual Educational Plan) meeting was last Wednesday. It's nothing new and shocking. Her speech is behind. Her receptive speech (following orders) is probably highest, but her expressive speech is way behind. She can point to whatever you ask, knows her colors, shapes, animals, but if you ask an abstract question like "what goes mooo" or "what animal barks" she wouldn't understand what you are asking of her. This leads to a lot of frustration on her part (crying, screaming) because you KNOW she wants to say something but she just can't put the words together and spit it out. She apparently seems very overwhelmed in her current 3k classroom (22 children with 3 teachers) and seems more content to play along side other children or just people watch instead of directly asking to play or jumping right in.Whether or not that is tied into her speech (and being insecure) is another thing. Mild pt/ot delays (she was a late walker, late jumper. Mild muscle tone issues but nothing overly concerning.) Our biggest concerns seem to be the speech and social aspects. They seem to think once we get the speech going the social will fall into place. The plan they set on the table was to keep her at our current preschool for tuesday and thursday and go to the elementary school for ECSE Wednesday and Friday. The Problem we are running into is that our current preschool is tues/thurs mornings and the elementary school is wed/fri afternoons. Kaelyn is very much a creature of habit and routine. I dont see how that will work for us. I put in a call to the school to see if we could just to the elementary school route. Our current preschool director feels so strongly that Kaelyn will benefit from staying that she offered us a half scholarship. I wish we could stay. I just think the flip flop will lead to melt downs and at that point ti wont benefit her anymore. She will lose out on anything she may gain by the stress. Anyhow, this is just a lot jumbled up in my head. Once we had Kaelyn's genetic diagnosis, we were basically at the beginning. They couldn't tell us anything more than we knew before we went. it's scary to think that in September, Kaelyn will be in a Early Childhood Special Education class. I am so very afraid that she will get made fun of. It's hard enough getting some family members to understand that its nothing we did, as parents, to hinder her speech. How do we expect the big bad real world to understand her or to treat her compassionately? I cry when I think that there is a chance that maybe she'll never have kids, that she will maybe never talk as well as peers her age. If family, friends, and the big bad world have issues with her now, how will they treat her when she's 10 and can't talk well. 15? 25? I hurt for her because she is so kind and sweet and doesn't realize that this isn't the way it is for everybody. All I can do is love her to pieces and help her the best I can. Be the best momma, advocate like crazy and cut out anybody who doesn't accept her and help her. She only needs love and faith in her. I swear on every momma bear instinct in me, the next person to make one off color comment, one negative, hurtful, less than helpful comment will get the full force of my protection. Family and friends should and will be a safe place for her to come to after she takes on the world. You are either part of this safe place or not. I wish I could make people understand her, to see the pure and unselfish love she gives to her sister, to me, to Jeremy, but its hard for people to see past the outbursts (cuz who wouldn't be upset when they can't express their need to use the bathroom, that they want apple juice not grape juice, or that they just want to be left alone?) they can't see past her lack of speech (no I will not let my child go thirsty because she can't ask for a drink like a big girl. what good would that serve her? another melt down?) and they truly are missing out on a love like no other from an amazing little girl. Knowing and loving my child is a gift that she returns 10-fold daily. By her willingness to pick up Aria's sippy cup 10 times after I have stopped. Sharing her snack 50-50 even after I offered Aria her own, how Aria gets the first hug when we pick her up from preschool. And how Aria loves her back unconditionally. We are so lucky and so is everybody who has met her and loved her as much as we have.
So what say you? Are you her safe place?
We are just beginning our lives with a beautiful daughter who was recently diagnosed with Partial Trisomy 21. Its not common, infact its pretty rare from what we were told, so we have NO Idea what the future holds for us. Hang on for the ride of our lives!
