I LOVE that Sydney has the greatest curlie-Qs in her hair. They make the cuteste piggie tails ever!
We had Sydney’s ARD (arbitration meeting with the school) and it went really well. I got the Individual Evaluation Plan (IEP) with the many sets of notes from all of the evaluators (Speech therapist, teacher, daycare providers, ECI specialist and myself). They did a good evaluation of Sydney. I had asked for them to come to the house for an additional evaluation since Sydney is VERY quiet at school and they wouldn’t get a good view of her capabilities. They did just that and I felt that their eval of her was fair.
The ARD went well. I reviewed the IEP the night before and ran it by some friends who have personal experience and they gave me sound advice. Essentially Sydney is sitting just at or below the typical range in age appropriate behavior, socialization, cognition, and physical abilities. Where she is delayed is in her language. Since learning from Downs Ed about how children with Down sydnrome need to be evaluated not based on just expressive language (what she is able to convey out through words or sign) but by receptive language (what she takes in and understands). In other words, Sydney understands a lot more than she will sign or say outwards. She is still delayed in language both receptive and expressive, but her expressive is more delayed of the two.
So, how does this affect her IEP? Since she is a visual learner (the learning profile of children with Down syndrome) she needs to be taught with multi-sensory methods (not just verbal cues). There were just a few things that we upped on her goals, but overall we were very pleased with the school’s team and Sydney’s teacher.
I feel like we are standing at the foot of Mt Everest, getting ready to start heading up without equipment. I am and hoping and praying that we are going to find the right people along the way to help equip us with what we need. This adventure has the potential to be a wonderful and enriching experience, or a terrifying trip that could end in disaster. So, what in the world is my Mt. Everest?!? It’s the education system. Sydney turns 3 this summer and we are starting the process of putting her into the school system in the Preschool Program for Children with Disabilities (PPCD). It all starts with an introduction meeting with a rep from the school district and signing papers to let the process begin. The next step is for Sydney to get evaluated by the school specialists. I am still not sure who all have evaluated her, but there were several people who watched her at her current daycare over several visits.
Now think about the pressure in that… Strangers will go watch your child and decide what she can and cannot do by observing her in school. There is also a form that I fill out as her parent and her Early Childhood Intervention (ECI) Specialist also fills out an evaluation form. The ECI specialist has been with Sydney weekly for the last three years, so knows her pretty well. All of these reports will be compiled into an Independent Education Plan (IEP) that will determine what services Sydney should receive, how much she will get and how often. The school puts the IEP together and then calls a meeting where it is a many to few situation. Randall and I will bring our ECI specialist to a meeting with a host of elementary school specialists, teachers, mediator, principal, etc. We will sit across a table with this panel of people and go through the IEP and sign off or debate the goals and objectives for Sydney for the next year.
This all sounds good and diplomatic, so why would I be so concerned and worried? Because of the horror stories of those who have come before me. There are countless warnings from parents of older kids “Don’t sign it at the table, always bring it back home”, “Don’t let them be vague with the objectives”, “Don’t let them be too specific with the objectives”, “Be sure to demand full inclusion”, etc. etc. etc. Everyone is trying to save you from doing the wrong thing and learning the hard way, but it is SOOOOO hard to know what is a good IEP and what is a bad IEP. Basically, the message that you get is make sure it is specific enough but not TOO specific… make sure it is vague enough… but not TOO vague. Oh and by the way, another mixed message is “Make sure that you don’t let them label her Mentally retarded (MR) so that she isn’t excluded” vs “Make sure that she is labeled MR so that she gets more resources”. Top this off with the form not asking me what I would like for Sydney to learn, it just asks some very vague questions about why/how she is disabled.
AAAACK! What is a mom to do? I do feel fairly well about the meetings that we have had. I asked the school to come to the house to see Sydney in an environment that she is comfortable in. She is doing well at daycare, but hardly speaks or signs. At home she is a chatterbox. Yesterday we had the meeting at home and Syd was stubborn, but showed her more chatty and interractive side. Whew! I was a little concerned at first since she was saying “NO” every time I asked her to do or say something. She warmed up quickly and they said that they were glad that they came by.
It was my first act as an advocate parent to ask for the home visit which wasn’t part of their original plan. They have been receptive so far. So, here we are at the bottom of Mt Everest, craning my neck to look straight up at a trip that will take at least 15 years (she is just 3). At this stage I cannot see the top, but I know what it looks like because others have been there before me. I have heard many stories, some are cautionary tales, some are horror stories, some talk about how difficult the climb is, and others tell of the glories and amazing scenery along the way.
We are taking our first steps of this long journey, but I know that we do not walk it alone. There is my amazing husband, friends, family, DSACT and great organizations like DownsEd who can walk with us, guide us, lift us up, and sometimes carry us. Most importantly, we keep our eyes on God and pray that He will carry us through this journey.
Hopefully life is starting to get under control after a year of turmoil. My poor blog has been terribly neglected, so I am not sure if anyone is even going to see this. Every year the families in Central Texas carry on the tradition of taking pictures in the Bluebonnets. The sides of the road and fields are filled with these beautiful wildflowers! It is the sign that Spring has Sprung. This year, as always we made our way to a great spot and took our traditional family pictures. This year we took pictures with our friends the Youngs. Enjoy!
Today is National Down Syndrome Day on March 21st… In recognition of the 3 copies of the 21st chromosome. March 21st aka 3/21) Although Down syndrome has been around as long as humankind, it was 50 years ago when the cause of Down syndrome was identified. we have come a LONG way in 50 years! Thanks be to God for this! Please take a moment to be thankful for the blessing that have come with this extra chromosome! My life has changed forever because of my Sydney, and I am so blessed! If you can, hug on the person in your life with Down syndrome. If you can’t hug them, send a prayer for them. This is my prayer:
Today I say a prayer for the world that I live in. I pray that my daughter grows up surrounded by love. That the world grows more accepting and tolerant. That people see her for the wonderful girl that she is. I pray that people see a beautiful little girl with brilliant sparkling blue eyes that are the color of the deep ocean. I pray that people see a smile that lights up a room. I pray that that every one of her milestones and are celebrated and that others have patience with her delays. I pray that people see a little girl, then a teenager, then an adult, NOT a diagnosis. That she will not be sold short before given a chance. That she will be will share the gifts that God gave her and will be able to serve others and not just be served. I pray that she grows up to know that God loves her and HE created just as she is, and she is a work of divine art. I pray that when she acts up that people around her see a child acting like a two year old, or a three year old, etc. and not attribute everything negative to Down syndrome, it’s insulting. I pray that I am a good parent and give her what she needs; LOVE, Peace, joy, education, friendships, therapies, patience, as well as discipline and fairness. I pray that I listen to what God tells me, and I that do right by her. I pray that this world pauses to learn from all individuals, especially those that are different in any way. Lord watch over us all, keep our hearts open and kind, and keep our eyes on you!
Sydney woke up this morning to a rash all over her body. Diagnosis? Roseola. Essentially, it is a virus where a child is contageous for up to 10 days BEFORE the rash… so who knows when or where she got it. She was in great spirits today, despite the rash. She didn’t seem bothered by the rash. It looks terrible though… see for yourself:
So, although she didn’t go to school today, she didn’t slow down. She managed to climb up on the bench by the front door and get herself stuck in her brother’s crate in a manner of 30 seconds! Gotta love the girl’s adventurous spirit!
This morning we went to the Learning Program for Sydney, then played on the playground for quite a while. Sydney and Wynter had a great time and us mommies enjoyed the lovely weather and watching our girls play!
Playing in the leaves!
They are fun to THROW in the air!!
The girls are watching my new app on the iPhone “Elmo’s Monster builder”
They LOVED IT!
Anthony was SO excited when he lost his first tooth today! It was barely hanging on when he came home from school. Randall assisted with a pair of pliers and out it popped! Seeing how we just saw the tooth fairy a few weeks ago, who knows what his image is of the tooth fairy, but he is completely psyched!!!
Last Saturday, Anthony and I were sitting on the couch when my husband comes into the room and asks “Where’s the dogs?” This is a typical question, as our front door sticks and it takes some elbow grease make sure it is shut all of the way. If not, the dogs are really good at nudging their noses in the door crack and propping it open. So, this is NOT an unusual question. I replied “Well, Chuy is right here”. Randall replied with “Well, where is Boomer….. for that matter… where is Sydney?”
My internal alarms went off and I jumped off the couch and made it to the front door in maybe two steps. Randall, Anthony and I are all outside calling Sydney’s name (and Boomer too). This is what you see when you walk outside of our door.
We run out into the court and continue to holler when Randall hears some “beep, beep and electronic engine vroom, vroom” sounds. On the other side of the huge bush is a very happy Sydney sitting on the neighbor’s big wheel pushing all of the electronic noise buttons.
WHEW! My heart could beat again!
Today is the National day to stop the r-word. You can take the pledge. What I really want is for people to just stop using the word in everyday speech. I know that it is difficult to understand the impact this word has on those of us who have children, family members or friends with Dow
n syndrome or any intellectual disability. And to many it just sounds like another instance of political correctness. But please hear these words, it just plain hurts. When I hear someone use it, I don’t get angry per se, unless pf course it is said in a mean and derogatory way, then I am not to be held responsible for my momma bear instincts…. Hell hath no fury than a ticked off mama!! But I do CRINGE to my very core when I hear it, because it basically means that you are comparing yourself, another person or a situation as being “retarded”, which like it or not, is a clinical term for my daughter. Basically replace the word “retarded” with the words “like Sydney” and that is how it feels. Now, I KNOW that when people say it, they do not MEAN to be offensive, which is why my personal response is a gentle request to not say it. Intended or not, it really does hurt. I cannot even imagine how much it hurts when you are personally the one that resembles the remark.
I used to say it casually before I knew better, and I am SURE that there are things that I say that are truly offensive in the eyes of others. So I ask anyone who reads this to be gentle with each other and when someone says, “please don’t say that, it hurts” respect those feelings and drop that offensive term…. and I promise I will do the same… just let me know. I will leave you with this verse fro, 1 Thessalonians 5:11
“1Therefore encourage one another and build each other up…” And an AWESOME video that explains the true feelings of a brother…
