Thursday, July 14, 2011

Until You Are In My Shoes...You Have No Idea

Everyday when I pick Eric up from school his teacher tells me how his day went. He loves his school. She says that even though he cannot talk, you can tell he is cracking "funnies" with the other kids. He laughs and plays. He sees the other kids playing and wants to join in, but is sometimes reluctant because he knows his limits. He knows that he is unstable and will fall easily. He knows that he cannot do things like the other kids. We always have to reassure him that he is ok to try anything.

Yesterday the teacher kind of hit a "sore spot" with me. Everyday after snack they brush their teeth. Eric's teacher said she was "surprised" that Eric was not able to spit after brushing his teeth yet. Now, I have to be honest here, Eric has always been quite a bit delayed in every part of development except, receptively. He did not crawl until he was 15 months. He did not walk until he was 3. He is still working on talking. For a long time Eric drooled A TON. So, as a parent for a professional, supposedly Special Ed teacher, to point out that she was "surprised" that Eric is yet delayed in another part of his developing, it kind of rubbed me the wrong way.

I still work hard everyday to not get offended when people say something or ask me something about Eric. It is the hardest thing when a stranger asks Eric "How old are you?" or "What is your name?" I try to let him answer for himself but when he says "Ga" for Eric and cannot say how old he is, the stranger then looks at me like "What's wrong with him?" I know in my heart that he is developing at his own speed and he is doing GREAT! When the Special Ed teacher asked me about the spitting after brushing his teeth I thought to myself, "Did this Special Ed teacher read the IEP (Individual Education Plan) that I gave her? Does she realize how far Eric has come in the past year? All of these questions keep floating in my head.

So that day when I saw Mark I told him about what the teacher had said. He actually was "surprised" that she asked a dumb question like that in the first place. He asked, "She is a Special Ed teacher, right?" Then he said, "Until someone walks in our shoes, they have no clue how it is raising a child with Special Needs." Mark always makes things so simple. That's what I love about him. He reassures me that Eric is doing great and he has come a long way. I agree.

I know that there will always be that person that rubs me the wrong way. I know that Mark will always be there to reassure me that we are doing the best we can with what was given to us. I know that Eric is smart and funny and super handsome! I know this road that we ended up on is a rough and windy road but it is always worth it when I see Eric smile and enjoying life.

I have a challenge for those of you who feel you are up for it...Next time you see a child with Special Needs and the opportunity arrises, smile at them and wave and tell that parent they are awesome! We always need to hear it! Don't be surprised if that parent cries right there in front of you! If you are at the park and you see a child with Special Needs, try to take your child over to say "hi" so that you can help them be aware that even though that Child is "different" that they still enjoy the same things. If you want to go even further, go say "hi" to that parent yourself because a lot of times people just stare and wonder. It would make our day to have someone not afraid to come and talk to us!

I would love to hear from anyone who takes on the challenge!

Until next time...


4 comments:

  1. Great blog with a super great suggestion to all! Usually, when I take Adam out in his wheelchair, people cross the street to avoid us or look the other way. Not all, you find that the elderly will go out of their way to interact...they somehow know the value of human life better than most.
    Not surprised about the Sped Teacher. I was a HS Principal for 30 years before retiring. They don't teach compassion, empathy, and simple understanding of disability in schools of education...just helping kids in reading, writing and math. Warm regards...

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  2. Hi there! I'm from Maryland but am also living in Cebu right now. My daughter has autism as well and is attending a school called the Reach Center located in Manduae. I have been here for several years already and would love to meet another American mom of autism here in Cebu. I was blown away when i saw your blog...i literally thought i was the only one going through this...the teachers said the same thing about my Ru, why can't she spit after brushing her teeth? Unreal! Last week Ru wandered into they're open room and found the fridge was pulled out from the wall so she decided to crawl behind and explore...she ended up with three severe cuts from the loose metal hanging off the back of the fridge. One cut was 3 inches long and very close to needing stitches. After school she came home came straight to me for a hug, crawled up in my lap and just snuggled for a good 15 min. Apparently they don't have a first aid kit at the school, so they just repeatedly poured rubbing alcohol over her bleeding wounds! Ok, i could go on i'm sure, however i am exploring the option of another school and other Dr.s. She is currently seeing Dr. Espina at Chung Hua...not the worst Dr. out there...not the best either. I would love to talk with you and exchange ideas sometime. You can contact me via email at talesofru@care2.com from there i will send you my cell number, if you ever want to have coffee during school hours i would love to join you. So glad i came across your blog, have a fantastic week...and just in case you don't know stores, offices, pharmacies, etc. will be closed this Friday due to Holy Week celebration...so if theres anything you need before the weekend i suggestion you get it soon. ^_^ Take care, Angela

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  3. I just found your blog today and I cried as I read the last part.You are right, they will never know what it's like unless they are in our shoes. I'm a young mom, just 24 years old, and my baby is 3 years old. She was diagnosed with Cornelia De Lange syndrome and until now I keep getting annoyed at strangers gawking at her and shamelessly asking about her age. I can't understand how thick people can get and I'm like, "this is personal, you don't really need to know". And then I even hate people saying "what a pity, she's a beautiful girl but so small". Yes, she's not normal but she's not pitiful, she's growing up in her own pace and I believe that kids with special needs are great thinkers, because they think differently than we do. They are little angels sent from heaven, and they live even greater lives than we do. So as a young mom, I'm hurt a lot about people's reactions. And I thank God I found your blog. It made me feel that I am not alone in feeling this way. Thank you and God bless you more!

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  4. Hi! I'm a special education teacher and was working in Cebu before but is currently in Singapore. I understand your sensitivities with what the sped teacher said because there is so much expectation that she knows better. The truth is, she may know the developmental milestones and is equipped with strategies on how to bring your child up the developmental ladder, but when it comes to your child, no one knows better than you. In my line of work with all experienced therapies from all over the world, that expression of being surprised at how significant the delay is in a child is not uncommon and everyday there are new discoveries, good and not-so-good. It's because children present different capacities in different areas. So a child that may have high receptive skills may present significant challenges in psychomotor development. Oftentimes language becomes the easiest way for people to spot, except when there is an obvious physical challenge or mannerism like awkward gait, odd hand movements, etc. Having practiced SPED in Cebu for 8 years, I'd say that most sped teachers concentrate only on specific areas like academics, classroom readiness skills, living skills and behavior management. Gross motor and speech development are often left to the OT and SLT and they often work individually. There is lack of collaboration that's why the disparity among different areas become more pronounced. Collaboration and integration are keys to achieve wholistic development in your child. So the teacher's comment, aside from she didn't read your child's IEP, stems from her lack of knowledge of your child's developmental capacities because her focus was on other areas so her expectations are different. You, on the other hand, knows the in-and-out of your child and sees him as a whole that's why i said there is no one else in the world that knows your child better than you. I recommend that you coordinate a meeting amongst the different professionals working for your child so that they can align their goals and formulate activities that integrate different target areas to maximize your child's potentials. All the best! :)

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