Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #27: Include me outside of school, too

on October 27, 2015

I need to be totally honest about something here and I feel a little like this is blasphemous in the Down syndrome community and I fear that maybe I’m going to be excommunicated or something, but in my world, it’s important.

I am not a huge fan of what I have observed about programming through Gigi’s Playhouse.

I will readily admit that I have never once stepped foot in a Gigi’s.  I have never taken part in any of their programming by purposeful choice.  Many, even most of the moms in the Down syndrome community go there often and love Gigi’s.  As a matter of fact, when Tessa’s diagnosis first became “public,” we had numerous people reach out to us and tell us how wonderful Gigi’s is for their friend, niece, cousins’s kid, neighbor, etc.  But it didn’t sit right with me.

I don’t know if this is a character flaw in me or some deep-seated unwillingness to accept that Tessa’s life may look very different than others, but when people told me that I should take her to Gigi’s to play with other kids like her, it got me a little angry.  I was not, and still am not, willing to believe that she needs to go to a special place, just for kids like her, to find friends and support.

This is what Gigi’s has signified for me.

I know that for a lot of families, it is vital and a great place to find comfort and information.  I’m glad that they love it.  I wouldn’t take it away from them because all families work differently and that is great.  But to me, inclusion means taking my child to play groups with all kinds of peers through park district and community programs.  And inclusion means that we don’t participate in walks just for people with Down syndrome, but we walk in big community races and wear our group shirts and infiltrate the typical community.  I believe in just being out there, in the big old world, helping my kiddo navigate her environment, teaching others to accept her through her participation in her own little way.  It is good for her and it is good for those around her.

May she do as she wishes, may her friends be her friends, and her loves be her loves, because she is Tessa and simply that.

That is what inclusion means to us.



11 responses to “Advocacy #27: Include me outside of school, too

  1. Surprise, I am commenting. Probably not, ha!

    I must say, first and foremost, I admire your conviction in everything you do. You stand up for what you believe in and you fight for your family. I feel we are similar in that way.

    I do think you might want to actually go to a GiGi’s before deciding on whether or not it is inclusive. While the foundation of GiGi’s is Down syndrome, everyone is welcome to come and play. I typically take my oldest when I go with Hope to a class, same with other parents who have more than one child. While there is a class with a therapeutic purpose for Down syndrome ( that’s one reason for going, the educational aspect) all the kids that come typically participate in some way. I usually only go when there is a therapeutic class, or large event. I have never been to just the open play times, but heard that all kids come: siblings, cousins, even neighbors. Typically after a class parents stay, and all the kids play together. Parents talk, kids have fun. Not sure how this is different from other organizations’ family events?

    I am not asking in sarcastic tone at all……Can you explain how what I described above is not an inclusive environment? Obviously I see the difference between a community race and having teams supporting all different causes, versus having a specific walk or run for Down syndrome. I am truly trying to see and understand the discussion that is going on in our community how one way is inclusive and the others aren’t. I personally have never been to a Family Fun Night (basically because Friday is Friday, the end of the school week. All I want to do is go home have dinner delivered, have someone or something magically put the kids to bed, and take a face dive into my bed #teacherproblems) but have heard that families go, hang out, kids of all chromosome count run around and have fun, and at times there may be a speaker there to discuss something to do with Down syndrome. I just don’t get how these two things are different? Again, coming from a place of truly wanting to understand.

    • Maggie says:

      No, I totally hear you (and I’m looking forward to reading your blog and conversing more with you!). I wouldn’t say that Gigi’s is much different than a Family Friday, but I don’t consider Family Friday to be something that is very inclusive either, at least not more than a group at Gigi’s. We do it once a month because it fits nicely in our schedule and it gives us a chance to connect with others in a similar situation and with a similar mindset. It is in a public place and open to the community… Not that Gigi’s would turn anyone away from their location, but it’s not marketed to the general public. Still, Family Friday is not the core of what Ups for DownS stands for. I don’t try to compare groups because they really fulfill a different purpose. But what was kind of hard for me to swallow about Gigi’s was the feeling that if I had a child with Down syndrome, she had to go there to be a part of their groups and their therapeutic sessions and that she could work in their Hugs for Mugs workshops because it was providing an opportunity for her just because she has Ds. I don’t want any of those things for her. I want her to live out in her community and have her play groups and dance classes and soccer teams and all of that just be the same opportunities as Ellie has. The core of UPS for DownS is being in the community… It’s the theater production that includes actors of all different abilities and its fundraising through runs that are not about Down syndrome, but about running and they are about being visible out and about through all kinds of activities and groups and nothing is done in a separate location or away from typical life. I guess that’s what I see as the difference…

    • Maggie says:

      I think it’s important too, that this is not a group vs group mentality. I very specifically wrote it not as a comparison, but as a statement about my feeling about the separation that occurs through the way that their programming is run. I fervently believe that they have a place in our community and that there is value in their programming. But it doesn’t fit in with the way we perceive is best for Tessa. Doesn’t mean in any way that it should not exist or that it needs to change.

      • Thank you for answering my question. I personally feel that we are both able to differ on certain aspects but agree on others, but most importantly know and understand the other is not coming from a negative place.

        I am still in the “I like the sense of community” part of my journey. I still feel the need to go to walks/runs/events for Down syndrome and bring my family and friends to educate them and get them on board with advocating for Hope. If you can tell from my fb posts they are very much geared to just knowledge about Down Syndrome, that’s where my family and friends are in their journey too. They don’t know much yet, so I am trying to educate this year, and play more of an advocacy role in the next couple years. I can get where you are wanting to say, that Tessa is more than Down syndrome and those events focus too much on that aspect. I am there part way, I just need my family and friends educated first.

        I fully believe in inclusion, and will have some fights in the future if Hope is discouraged from being apart of certain activities because of her diagnosis. We plan on putting her in soccer, like our oldest. Probably trying some dance due to her lower muscle tone, but always in an inclusive environment. So, we mommas need to stick together to help each other out if we run into problems down the road.

        On the whole group vs. group thing…..I did see how you did it more of your personal perspective and not necessarily UFD. Since you mentioned it though it prompted me to wonder what the difference between the Family Fun Night was and classes at GiGi’s. I personally haven’t been to any of their events. It’s hard on Fridays for me, then I had heard rumblings about other organizations being put down at events. So I had decided, maybe I didn’t need to try all organizations. Then I met you and know Jessica participates in Family Fun Night, so I thought, maybe I SHOULD give this one a shot. Then…..well….you know what happened. What you might not know is that I am supporting a parent through NADS and they have a sign, they were oh so proud of it too. They commented to me that after reading that on GRM they were embarrassed and questioned if they were doing something wrong. THAT was my whole intent, I was trying to protect that mom and any other moms out there, but it did get a little out of hand. I am a bit protective…..you might have noticed that.

        I do look forward to talking with you because I feel that overall our vision is very similar and we want whats best for our kids. I like your sense of humor and enjoy reading what is going on in your family. I don’t know about my blog yet…..we shall see if I keep up with it. Right now it is therapeutic, and coming from a sense of wanting to help. Who knows what will happen with it though.

        Thank you again, for not taking what I said in a negative light and understanding where I was coming from.

      • Maggie says:

        Yes! I think the conversation is so important and I think it’s important for every family to decide what works for them. We are proud NADS Yard Sign Users too, as I think it’s totally valid to show our neighbors that “Hey, we’re here and we love our life!” I don’t think that the original poster meant harm, but I think that she wanted to raise the question of how we best advocate and it came out totally wrong. It’s different for everyone.

      • Agree completely! I think each organization has a “specialty” and we are lucky to have all of them. My friend was just having trouble with her daycare center. The center is one of the top centers around and the teachers were refusing to do any accommodations. One staff member even resigned. There was talk of a petition to get her out of the school. Seriously…..this was happening!!! Disgusting!! The mother called an organization because she was so upset. She called the organization that she goes to and participates in, while they were sympathetic they couldn’t give her much advice on what to do. I went and contacted NADS and NADS has a plan to help educate and advocate at that center now. We were both so happy that there are multiple places for support and resources.

        I am going to stay away from commenting on whether there was “harm” meant or not. I have seen too much, heard too much, and that night was given way more information from strangers than I needed to know. We will just say, we agree to disagree on that one…..if you know what I mean.

      • Maggie says:

        Well thanks for being willing to converse with me, too, and hearing out my unpopular point of view! I love a little civil discourse on a sick day at home. 🙂

      • Sorry, you are sick! Feel better soon. I think everyone entitled to have their own opinions: popular, unpopular, neutral. I like to hear different people’s points of view, I might not always agree though. I enjoy having conversations that discuss differing view points, but only if they are respectful in nature. Since I felt that you would know where I might be coming from, that is why I felt I could comment. Thanks for giving me a better glimpse into where you were coming from. Hopefully we will see each other soon, might have to be at a NADS event though….huh?? LOL!!

        Feel better and get some rest, a fun weekend is ahead.

  2. Jessica Rathman says:

    Hi Maggie & Erin! I am slacking at the office a bit today, and was catching up on some blog reading, I just wanted to say your discussion makes my heart happy. I love a good healthy discussion where the goal is understanding. I love learning from other moms too. Also, this is my first ever comment on a blog, and I read many. So consider yourselves VIP. Ha!

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