Listen to the mustn’ts, child,
listen to the don’ts,
listen to the shouldn’ts,
the impossibles, the won’ts,
listen to the never haves,
then listen close to me –
anything can happen, child.
Anything can be.
Shel Silverstein
The Dreaded IEP…
I anticipated it for weeks, pretended it wasn’t coming, avoided talking about it with anyone until the Friday before it happened. Eventually, I told myself I was being ridiculous so I did what I always do when faced with a challenge. I armed myself with weapons; pictures of Mia and her brothers, stories about her, words that described her. I created a brief handout to give to this new team of people who were entering our circle. As much I hated letting them in, I knew it was time
(A brief sample of what I gave them at the meeting.)
Amelia Catherine Rivera
AKA: Mia, Momma, MiMi
Mia is a sister , a daughter, a fighter, a princess, a connector and a self-willed, snuggle bunny. Although she is small, her attitude makes up for her size. Please do not tell us she is NOT capable, that her potential for improvement is POOR, or that she will NEVER accomplish something. Just because Amelia does not do something today, does not mean she will not achieve it tomorrow. More than anything during this journey, we need your tolerance, compassion, and understanding. We welcome you into her happy, smiling, content world!
You see, new people scare me when it comes to Amelia. I have been living in a safe, comfortable world these past three years. After the initial diagnosis, we searched and searched for people like us. Families in our situations that understood what it meant to be given a grim diagnosis but also realized that no one in the medical field had any idea of what WHS was really like. People who believed that anything was possible!
We lived and breathed in an environment that protected all of us emotionally. If a person did not see Mia for who she was, I dismissed them as part of our lives. Doctors, specialists, therapists, and, I cringe when I say this, friends. I had a new criteria for people who were allowed to enter my sanctuary. And I didn’t even realize I was doing it until I was seated at the table with strangers from the school district. Who were THEY to comment about her abilities after only a brief observation? Most importantly, would they see her and not the syndrome?
The sobbing began ten minutes into the meeting when I looked at Amelia’s objectives for speech. It stated something like she would be able to hold a conversation with another person. I laughed a very sarcastic laugh when I first read this and realized that in the next year she will not do this. I was admitting this in my head and knew I had to tell them to take it out or the rest of our meetings would be about failures. But what about the paper I had given them, “Do not tell us she is NOT capable”?
And here is the dilemma.
You know that pressure you feel in your chest that is followed by heaving and sometimes hiccupping because you are trying to breathe at the same time you are talking and crying. Embarrassing as it was, that is what I was doing. These strangers broke down my protective fortress in just one sentence. I could no longer deny the words in black and white. She is, and always will be, severely disabled according to the standards in our society and our school districts. But we don’t use that phrase in our circle. We call her things like a stubborn princess, or growly girl, or Houdini as she maneuvers out of her therapists positions, but never severely disabled.
In the meeting, I crossed out the goal about the speech. I know she will not hold a conversation with someone in the next year. I am hoping for some sounds like ma or ba. I wasn’t supposed to scribble it out, but my coping mechanism kicked in because I do not want to focus this next year on what she has “NOT” accomplished. I am sure they marked off the, “Mother is crazy box,” and tucked it away in her file with a red flag whenever a new teacher, social worker, or therapist picks up her case. But I won’t sit in meetings where people tell me what she can not do. I worked so hard these past three years to keep these type of people out of our lives.
I hated myself when I left that meeting. How did I let myself go full circle with my emotions? How was I back to feeling so helpless and scared about what the future holds for her? Where was my positive outlook on her diagnosis?
When I woke up this morning and went to Amelia’s crib, I saw it again. She smiled and I melted. And when I opened up my computer I realized it is also here. In the stories you tell me about your babies, your children, your journeys. I opened the blog today and breathed a sigh of relief. Here is my hope for the future!
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I just love the way Mia has her hand up in the air as if she is saying “right on MOM! My Taylor is 3 and I just had to sit through the same type of questions you did. I can honestly say that I love the two teachers Taylor has. There is only 5 kids in the class including my Taylor. I can see much improvement in her since she has been going to school and she LOVES it. I pray that this transition will be great for you and Mia. Keep doing what you are doing and just let them know you are there and have your hand in everything they are doing with your child. Ask questions everyday and keep them on their toes. Make surprise visits. Let them know that you are not looking for a baby sitter, you are looking for people that will give your child everything she needs when you are not around. Please update on how things are going with Mia and school.
Thank you Christy for the advice. I did get a chance to meet Mia’s new teacher at the meeting and she is awesome! Her goals and objectives for Mia were right on and I am excited to wrok with her. What worries me are her therapists who I did not get to meet. How much therapy does Taylor get? I asked for an hour of each but I am wondering if I should ask for more.thanks again!
The therapy is one of the issues I have. Taylor only gets 30 minutes of PT,OT,and Speech a week. They give therapy in 15 minute increments. She only goes to school 3 days a week and it’s only for 2 1/2 hours each day. So as you can tell there isn’t much time for her to get what she really needs. I hope that after this first year and when she turns 4 that things will be much different. I had been taking Taylor to private therapy since she was 10 months old and it was in 30 minute sessions twice a week. Since she has started school I am not able to that anymore because of the timing. We live in a very small town with not much to offer so we have to travel atleast 40 minutes to get to therapy. All of Taylor’s specialist are atleast an hour away and some are 2 1/2 hours away. I haven’t said too much about the therapy issue yet because Taylor is the smallest and youngest in her class and I can tell she is picking up on a lot just from the other kids. PT and OT are given in group therapy and speech is one on one. I am very pleased with speech. Taylor has been learning to sign. She doesn’t really understand yet what each sign means but it is coming. I would ask for a time to be set up for you to meet the therapist. Tell them what you would like to see and let them know your thoughts because no one knows your child better than you. Be sure you meet them before her IEP is written and read it before you sign it because you may want to change something.
I always love reading your comments and posts Chrissy! You are so eloquent and good at verbalizing your feelings about these experiences that are common to all of us. I totally relate to creating an environment that protects us emotionally…even at the expense of some friendships. I talk such a positive talk and don’t want anyone to underestimate Brodie and I sound so strong but when it comes down to it, I have such deep fears and doubts and defensive emotions that are right under the surface, that would be me crying in the IEP meeting after preparing such a strong front…but I loved that you shared that, we all know the courage it takes and the emotional vulnerability to be our child’s best advocate. You are a strong and wonderful mother and Mia is going to do great in school! And Christy’s comments seem very helpful too, so true that we don’t want a babysitter but people that will give our child everything he needs when we aren’t around….Beautiful post and beautiful picture of Mia, she looks great with that little arm up there- I like her spirit!
I know these meeting are always difficult to deal with . At first they state all the things that are wrong or missing with our children , Yet say based on these findings. Our children dont need some of the vary services that we do need. I think its a great idea to take pictures of our children , show them with family and friends. we take pictures when we go to the hospital . This valadates our little ones.!!! Great Job………
Thank you Selina, LeeAnn, and Christy for your kind words. I have been feeling so vulnerable lately because of this meeting and second guessing myself when it comes to Amelia and what she needs. LeeAnn you nailed it when you said we put on such a strong front but underneath we are scared to death.Thanks again!
Chrissy, I am not at this point yet in Kaylee’s life, but I recall it like yesterday with my daughter, Amanda. The transition process is difficult~ especially when you are not sure what you should be asking for and what you are entitled to. I can only imagine your internal pain as you read that first speech goal, and you were so strong to cross it out and so right to remember that it is about working on goals that will reinforce what Mia CAN do and WILL do. Our children are stronger than any of the online research gave them credit for; their spirit is clear– even if their muscles don’t present it as well. I am proud to call you my friend and sister on this journey; it is not one we wanted– not one we asked to have– but one that we will share together. As for therapy, I was always told that it is never wrong to ask for more than what you think you will get, so why not ask for 1 hour of each a week (2-30 min. sessions/week)? The worst that can happen is that they say no…and then you fight, just as you have the past 3 years, because you ARE your daughter’s mother! Strong… Determined…and SIMPLY AMAZING!
Chrissy, You are a fantastic writer. I think you missed your real calling. I can’t even imagine what you
are feeling inside. I am sure your honest posts must help many others going through the same situatuion. You were totally right when you told me to keep a journal,It really does help when faced with issues that are out of our control. I am always here if you need to laugh, cry, just not talk or whatever else.
You are a terrific writer and I appreciate your emotional expressions. They are your fuel. They move you to act in ways you need to act. Don’t stop being you. You have a beautiful family. I enjoy the photo’s you share and the video’s you create. You are very talented.