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Meet the Parents

8 May

This is the fifth installment of the story of our journey with Maura…

When Maura was about to turn three, it was announced that she would age out of the Early Intervention program, and considering what we knew to be significant global delays, we were suggested that we sign Maura up for a special education preschool program.

I’ll admit, I’ve never been too keen on preschool.  One of my kids never even went.  It just seemed…optional to me. The two who went to preschool were comfortably in age 4 when I sent them.  And could talk, thereby tell me all sorts of things about their day.

The idea of sending Maura off to preschool so young was a bit concerning.  Made even moreso by the fact that we weren’t sure where she’d go.  We were living in a small town and at that point, the special ed preschoolers were bussed up to the next town.  Only one day, someone realized that the majority of the kids in the other town’s class were from our town.  So a local program was starting.  My child got to be part of the Guinea Pig Class.

I wasn’t certain about it all, but knew this was probably in Maura’s best interest, so went off to the parent information meeting.  There were only six kids in Maura’s class, so it was quite the intimate meeting.  By the end of it, I was a little stunned – not from what the program director told us, but by other parents’ reactions.  So emotional.  So forceful.  So opinionated.

I had been told once or twice how I was such a “laid back” parent.  I used to get offended by that – I mean, I cared!  I had concerns!  That night, I understood what they meant.  I was laid back compared to others.  Maybe not laid back – I just didn’t go in there with both fists up and ready for a fight, looking for things to make negative comments over.

I can understand why the other parents were upset – their children were in the other program, it was a good program, and the unknown is scary.

But…

wow…

Still, I found myself getting excited by preschool starting.  Completely nervous, not sure what I’d do with myself without Maura.  I mean, I’d spent the past three years taking this girl everywhere with me, half the time on my hip.  It would be weird to not have her there with me.  But I was excited about meeting other moms of special needs kids.  I imagined we must have so much in common.

Yeah…

not quite…

That year, I learned that your child could have special needs, but if it’s not the right special need, you’re shunned from certain circles.

I’m a nice gal.  Really.  I’m pretty friendly, open to new people, and always ALWAYS try to see things from the other person’s point of view.  I walked into the preschool with a “Wow, we have SO MUCH in common!” attitude.  I was greeted with “Sorry, your kid’s not like ours, we have no time for you.”

It wasn’t all in my head.  When Mom 1 said to Mom 2 “Do you have the special needs directory?” and Mom 2 said no, Mom 1 explained how it was a directory of doctors, dentists, specialists who worked with special needs kids.

I said “Oh wow, I could use something like that!”

Mom 1 gave me a pointed look, then turned to Mom 2 and said “I’ll make sure I get you a copy.”

I got the message.  Or at least, I thought I did.  Apparently they thought that message wasn’t completely clear to me.

I don’t remember how the conversation started, or what it was about.  I just remember the one mom turning to me and stating “You’re lucky!  Your child doesn’t have autism!”

Yes, somehow I had found myself in a contest of “Who’s got it worse?”, and honestly, I didn’t want to be the winner.  But really?  REALLY?  Somehow I was luckier because my kid didn’t share a label with theirs?  I don’t think I responded.  My mind was blown.

At that point, I gave up.  I was not going to be bosom buddies with these ladies.  I realized that just because two people each parent a special needs child doesn’t instantly bond them.

You can have a special needs child and still be a jerk.

I look back at it now and kind of laugh – because at last check, I was the ultimate winner of that “worse-off” contest.  My child may not have autism, but she has not progressed as much as their children have.  And we got the added bonus of seizures!  Woohoo!

Eventually, we all simmered down and made peace.  But it was definitely a lesson to me.  Not every special needs mom is gracious and helpful and open-armed.  Those who should be the first to help a fellow special needs mom out are sometimes the first to walk right past them.  Sometimes they are so caught up in their own child’s label, they get a very narrow point of view with which they judge all special needs families by.  The ironic part is when they go around preaching how their child is in so many ways, no different from any other child – and then are the first to exclude you because your child doesn’t have the same diagnosis.

It was funny – when we moved here to Ireland, Maura started going to a special school.  We didn’t have to provide the right diagnosis. It was open to any child with moderate intellectual disabilities.   The parents here weren’t all about their child’s specific label – they’ve been about their child and their schoolmates.  I found a community of special needs families that are there to help and support one another, not a handful of people fending for themselves and fighting alone for what their child needs.  It has shown me how a great special needs community can be like.  It’s been refreshing.

I don’t think I’ve ever felt as alone with Maura’s issues as I did that first year of preschool, which was a shame.  It was a place where I should have stepped in and been welcomed as a friend.  Instead, it was a bit like junior high and I wasn’t wearing the right name brands.

But as with everything else, I learned from it.  It’s why I am always willing to help out a fellow special needs parent, or at least give it a try.  No one should be made to feel like they don’t belong, especially when they’ve been thrust into the world of special needs.  I mean, if we can’t help each other out, then what good are we?

Maura, all ready for preschool.

Maura, all ready for preschool.

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14 Responses to “Meet the Parents”

  1. Renee Anne May 8, 2013 at 10:26 am #

    That’s something I’ve noticed, regardless of the disability/issue. My son has a goofy metabolic disorder (that Maura was probably tested for at some point)…the parents of that community are all pretty supportive because it’s relatively unknown territory but trying to get schools to understand the severity is a whole other matter. And then throw in that some of the children with these disorders also have other special needs, whether it be delays in speech, delays in reading, or just general cognitive disabilities…..yeah, it’s not been a fun ride. You go from a supportive community to one that should be supportive and, instead, you’re shunned because of whatever label your kid does or doesn’t have. I’m not looking forward to putting Little Man in school because of it. Of course, I’m the type that will call people out on being jerks…and if I don’t, my husband will. But we shouldn’t even have to do that!

  2. lifeofawillow May 8, 2013 at 10:36 am #

    Shes beautiful.

  3. Courtney May 8, 2013 at 11:11 am #

    I love that picture! I just want to scoop her up and give her some tickles and love….

    • phoebz4 May 8, 2013 at 11:33 am #

      I may refer to it as her “Puss in Boots” picture, what with those big eyes and all, lol! She was such a cute little stinker – now she’s a cute TALL stinker!

  4. Megan Matthew May 8, 2013 at 11:18 am #

    I don’t know where in the Seattle area you and yours are moving, but we live in Federal Way. I am sorry you are giving up your lovely school to come here where it will be more like Michigan, but it is a lovely area and I hope you find a place that you like and come to love. Our daughter is in Federal Way schools. If you have any questions, please don’t hesitate to contact me.

    • phoebz4 May 8, 2013 at 11:33 am #

      thanks! I may end up having some. I’ve been told Bellevue is the best for special education – if you have any advice, feel free to drop me an email at catherdingblog@hotmail.com 😀

  5. Sharon Hoover Weidemann May 8, 2013 at 1:29 pm #

    Wow. I’m not even sure how to respond. It’s amazing the painful lessons we endure. I wish you lived in Mount Wolf, PA:). My daughter has Fetal Alcohal Syndrome and we are viewed as crazy for having a daughter like that (who would do that to a kids?! Or who would adopt a kid like that)… She’s def. in the spectrum but I’m not about titles… It doesn’t really help anyhow. I just want her life to be as good as we can make it. You and I could easily be friends and my other girls would totally love Maura:)… And I’m sure they’d socialize with your boys and kill aliens on Xbox if they’re into that sort of thing :). I hope you find some cool friends wherever you land.

    Sharon

    • phoebz4 May 8, 2013 at 1:34 pm #

      oh, there is a lot of killing on Xbox here, lol!

  6. Caroline May 8, 2013 at 3:12 pm #

    Love, love your blog. I find myself checking my emails to find out more about Maura’s story. I have a son with global developmental delay and mild general Learning disability. I can relate to your story so much. I actually smiled when i read this instalment about Maura not having the right label and other parents reaction. I too have always felt left out because my son didn’t have the ‘right’ disability!! It can be so loney, that’s why I found your story so great because for once I can relate to someone. Thank you so much and your daughter is a real cutie pie.

  7. marie clare May 8, 2013 at 4:46 pm #

    Im Irish, moved to the NYC area in 95. My son is 5 now with global delays (no diagnosis) and we are seriously considering moving back home this summer. It warms my heart to hear your experience with the Irish schools and parents has been really positive. While Im excitied to go back home Im also quite nervous about leaving everything behind that we know and finally getting a handle on in terms of Ryans education.

    • phoebz4 May 9, 2013 at 3:13 am #

      I have had quite a positive experience here – my daughter goes to a St. Michael’s House school that serves So. County Dublin and I cannot say enough good things about the school. I’m certain not every school is as great or every area has tons of services – there are budgets being cut everywhere, but those it affects aren’t taking it lying down. My older daughter goes to a national school and they are very good with the special needs students they get as well (they just opened up a new sensory room.) So I would recommend researching where would be a good place for your son to go to school before deciding where to live.

      I can state honestly that every single person I’ve come into contact with in regards to Maura’s schooling and care has been so sincere about making sure she got what she needed. Those who couldn’t help offered advice and pointed us in the right direction. My other daughter’s school principal was honest with us, stated there was no room for Maura at that school (as she’d need a full-time aide, and their aide numbers had been cut) – but he then got me in touch with a SENO and afterwards would ask how Maura was doing.

      All that aside – I do know NY is quite good about special needs kids. There’s a blogger who lives there – Autism Daddy – and he has lots of tips on how to get social welfare benefits for kids with autism – maybe that can help you guys out?

      • marie clare May 9, 2013 at 12:19 pm #

        Unfortunately we are right over the border in Bergen County NJ, and NJ is Awful for SN especially if your child does not have autism. Unless you are below the poverty line you qualify for nothing. Its really one of the reasons we are going home, the medical / hospital bills, therapy bills and DME bills are mounting up. The other huge reason we are moving is for family support. (my non corny way of saying i miss my mum or mam as you have probably become accustomed to hearing them called lol)
        But you are right, NY is pretty good for services, pity we moved from Queens right before Ryan was born.

  8. Jenn May 8, 2013 at 7:25 pm #

    Wow! That could have been me when my son went to a boys school for a year. The director of the school actually chastised me one day for loving my child so much. “it’s just so difficult when I watch you drop him off everyday because you hug him every day. Most of our boys don’t have that and never will”. Because loving my son is a bad thing, right? I was also told by the director of the local ARC that I just didn’t understand what she was going through because my son didn’t have the aggression issues her’s did. Oh he had them all right. I had already been down that road. Broken phones, broken windows, couldn’t find a babysitter or day care. I couldn’t be a part of their group because it was just for Autism parents. Eventually my son was diagnosed with Aspergers, but not until much later in life. I coach Special Olympics now and I hope that I will always be the one reaching out to other people.

  9. My Dance in the Rain May 28, 2013 at 11:35 am #

    Thank you for this post. As I about to venture into the world of public schools and special pre-k it’s helpful to have an open mind and to emotionally prepare myself.

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