May 29, 2014 § 2 Comments
One of my friends/co-workers (amazing teacher) sometimes talks about when her brain feels buzzy. The feeling when you haven’t slept and there is a lot of physical noise coupled by mental stress – that makes a buzzy brain.
I have a buzzy brain right now and I have had it for days. Extreme stress and no sleep – not good!
Yesterday our annual review IEP meeting – went seemingly wonderful and left me feeling hopeful. The back up support of a well known Williams Syndrome specialist who led the meeting made all the difference. She educated the team about Williams Syndrome as she went through and was gentle with pointing out current weaknesses in Ari’s programming.
After the meeting I set out to tackle a task – contacting Children’s Hospital around confusion for an upcoming dental surgery.
Today at work I received a very confusing email from Children’s that was way out of direction regarding protecting our daughter during surgery since she is considered high risk (all people with Williams Syndrome are). I guess disregarding protocol is ok? NOT!
Thank God for the world’s best geneticist who is taking over the process – I hate bothering her but I know she will get it straight and I will have peace knowing things are being done right!
But then, as I was about to relax after all this was done – the dreaded note home from school came in the door with my exhausted little girl.
The note detailed her horrible behavior all day and how she had to be talked to about her sassy attitude. You know what it didn’t mention? It didn’t mention anyone trying to figure our what was up with her, why she was frustrated or what they could change about her day to help her switch gears. It basically pointed a finger at her saying “bad girl”.
They clearly had learned nothing in the meeting – nothing!!! My heart is broken, my daughter’s heart is broken.
In the car, on the way to her occupational therapy appointment after school, she discussed it all with me and was able to tell me about 6 things that had gone on that affected her but no one would listen, no one looked closely enough to see the big picture – ugh! I am so disappointed.
Needless to day with a surgery that’s taken 4 months to try to schedule and still isn’t and an educational system that repeatedly has let us down – my brain is buzzy – soooo buzzy.
Teachers – when a specialist tells you how it’s supposed to be for a kid – they are not kidding – they actually do know better than you! And Teachers remember behavior is communication – it is a symptom of something else gone wrong – stop treating the symptoms and start figuring out the problem and most of all STOP BLAMING THE KID!!!
May 21, 2014 § 5 Comments
It’s hard you know talking about the future when your child has a disability. It’s hard to even think about it. It’s complicated, painful and you have to muster up all your hope and faith. You have to trust the world and plan for good things to come but prepare for the bad things as well.
Developing an IEP during a transition year brings a lot up of emotion. It’s amazing how I can only deal with it on a moment to moment basis. It’s too much to think about or talk about in one conversation – it’s too big – how do you project the future and prepare for what may or may not be in advance? Today on my way to an appointment to discuss such things I came across an unfortunate situation – I got stuck in traffic and I was alone. I was alone with my thoughts – my mind was already swirling with preparation questions I was asked to consider in advance – hopes, dreams, fears, concerns, etc. I had already written down my answers in advance – it’s easier for me to write – it’s less emotional I think because when I write I don’t have to say it all out loud and it seems less “real”. But, there I was trapped with myself -and my thoughts, then the flood gates opened – what the hell was wrong with me? Where was this coming from? Why was I crying? Crap now I’m crying writing about crying – maybe writing isn’t less emotional!
It’s because it’s all so hard – we don’t do this for our typical kids – we don’t plan every last detail – we wouldn’t. But for our kids with needs we must be fortune tellers, advocates and mothers all at once – some days that is too much.
Teachers – when you sit in IEP meetings and listen to a parents concerns and vision – respect it! It is a heavy task to produce a vision for the future for another person – especially when none of us really know what tomorrow may bring.
May 12, 2014 § 2 Comments
Today, Mother’s Day, I am filled with gratitude beyond words.
I am grateful for my own mother and how the life she and my father gave me as a child shaped me to be who I am today. They are the reason I am a teacher. My mother used to run the “Lollipop Nursery School” in our home, she was a nurse and my Dad a teacher – as a special ed teacher I feel as ifs career is a total blend of the two of theirs.
I am grateful that being a teacher has given me so much guidance in raising my children. It has allowed me to understand curriculum and how schools work and be able to connect at a tangible daily level with their school life. Although, my son now does math that is so far over my head that I can not provide any support at all.😬
Obviously being a special education teacher has helped tremendously with raising a special education child. A blessing and a curse really – I know too much. I often say when preparing for IEP meetings it’s like playing chess against myself! Always anticipating the next move and predicting what may happen. But the knowledge and not having to learn the ropes really helped. For this I am grateful!
I am grateful for the fact that I have a daughter with special needs. I wouldn’t trade her diagnosis for the world. I wouldn’t!! it certainly hasn’t been easy but it has been an exciting ride! My life is so full from the people we have met on this journey. My heart is so full from the ups and downs we have experienced. My knowledge about special education and special needs children is so much greater now. I am so grateful for the joy that she brings the world with her sparkle that’s contagious.
I am grateful for how it has shaped my marriage and the strength we have learned to develop as a team.
I am grateful for the lessons having a sister with special needs has taught my son. These lessons of acceptance and seeing people of all abilities and disabilities as “equal to” and never “less than” are something that he has learned through love and experience.
I am just so damn grateful for all of it today!
Thank you Aidan and Arianna for being amazing kids – you are a blessing to me and I am so lucky to be your mom. ❤️
May 7, 2014 § 1 Comment
Yes it’s a real thing pre-anxiety (ok I just made it up but it’s real to me)! – I am having anxiety about the anxiety that I know I will be having in a couple weeks at Arianna’s IEP meeting. It’s a transition year so it’s an involved IEP this year with all new players.
Yes my anxiety is ramping up already because I need to start preparing. I have some outside support this year so that is a huge help but I still need to make sure I think of all the details and how the transition may affect my daughter. I need to think of everything from how will she manage a combination lock , changing clothes in a locker room for gym class to the dreaded “puberty” movie. These were all on my list of concerns for my son but it’s just different with her – there needs to be fail-safes set up everywhere for everything in a new environment with all new adults.
The anxiety also comes because of the anticipation – it’s always stressful, it’s always a unpleasant experience. I always leave feeling drained, frustrated and sad. Just the thought of all this makes me anxious!!
All of this feels like preparation for battle. I prepare my ammunition to advocate for my daughter (which means figuring out what it is I think she needs and how that translate into school). I prepare my armor – my emotional armor. Believe me, I can’t go in without it. If I let my emotional guard down for one second I will “lose it” one way or another (shouting, crying). I have never lost it totally – I’ve come close, I have teetered, but never gone over.
Typically there is tension in the room before I walk in. I always imagine the thoughts the “team” is having about me and seldom do I think they are thinking “good for her advocating for her kid”. I mostly believe they are thinking “here we go again” and I always imagine they are thinking some other unkind words – I’ll leave those words up to your imagination.
But the truth is “I’m good”! I’ve got this! I sit in these meetings weekly pretty much. I know how they go. It doesn’t change the worrying, the anticipation or the preparation. It doesn’t change that the “mama bear” in me is always lurking right under the surface and believe me you don’t want to mess with the mama bear who has been preparing for this “battle” for months already.
In the end I am hopeful that maybe this year will be different. Maybe this year, there will be understanding and peace.