Once a month we have a play date with our East bay Parent's of Special Needs Meet-Up Group. I have really enjoyed being a member of this group. There are two events Monthly, the other is a parent's night out. I have attended only one of those, and to be honest, it had been a while since I made the play group event because it is scheduled for 10:00 AM Saturday Morning.
As you all know, I am not a morning person, and in some cases, Holly is only getting up by 9:00-9:30 so being anywhere at 10:00 have her fed and dressed and me ready is hard to do. On this particular Saturday, Dad had a Writing class at 10:00 AM, so the night before I picked out clothes, got the Diaper bag and bottles ready, and was all prepared. It was still a mad dash out of the house, but we had time to drop off dad and were the first to arrive at this cool little park in Albany called Totlot. 
The park is pretty neat with a combination of bouncy turf and sand, and lots of "left" toys, including these trucks, various "baby" slides and "play houses" and little buckets and sand movers, Exersaucers, tables, push toys, a sand table and other such things. There is also one play structure with a slide, and a separate swing set.
This is Holly playing near Quinn. His mom started the group and he also has Fragile X Syndrome. Because he is a boy he is more severely affected then Holly. But he makes strides forward on a daily basis, and has such a cheery disposition. I admire his parents courage. It is sometimes hard for me to meet with this group, because I think I have been so lucky with Holly's Development, she is making such strides, and isn't as affected as most of these kids. It just blows me away to talk with there parents, who are all such amazing and strong people. i feel sometimes like I don;t deserve such a great support group, but I sometimes feel bad when Holly does well, and other's are moving forward slower.
Many of the kids in the group however have more physical disabilities versus cognitive ones, but they also have a variety of global developmental delays. It has really been an eye opener talking to the different parents, hearing there experiences with IEP's, The Regional Center, various Therapists, Therapies, Day Care centers, and learning about the variety of disabilities and how the kids are affected. There are a variety of age ranges as well up till about 5. I have only really ever met a handful of the parents and children, the group now has about 20 members but a lot of them live further south and it is a bit of a track to come up this way. A few of the members I haven't met have some Sensory Integration issues, which I want to learn more about.
Playing with us today was Griffin who has Epilepsy and CP with his Mom Meridith, Griffin is about 3.5. Nathan was also playing with us, he is just learning to walk, and doing so amazingly. I have met him and his mom Irene a few times, back when we had these play dates at Tumble and tea and Nathan is making such amazing progress. I am not sure what his diagnosis is, but i know that he has low tone, and it has been so neat to watch him get strong and stronger over the months, to now where he is holding himself up and walking with Mommy's support.
We also met Joshua and his mom Danielle for the first time, he is older too, I think around 4 or 5. He has CP and some Speech Delays. One of the things I have enjoyed so much is learning about the various therapy methods. Quinn is in a daycare that uses ABA methods, and he previous was using Signs and Pecs. Joshua is going to be getting an adaptive communication device which is just so neat the many ways in which we can help these kids communicate and learn. it amazes me.
Finally, there was Samantha and her mom Lisa, who happen to live just around the corner from me, (I learned this a few weeks ago when i attended my first Parent's night out Dinner) and since this meet-up I have even run into Samantha at our park. She doesn't know how to walk yet, but she scoots around like a mad woman, and is starting to pull herself up and stand with help. Even so, she is very fast at getting to where she needs to be. She was born at 26 weeks, and her Esophagus wasn't connected to her Stomach, she still has a feeding tube, but is now learning how to eat on her own and getting much stronger. I couldn't fathom having to have my baby go through those surgeries (Her esophagus has been reconnected now) and deal with the level of physical issues, I admire her Mom so much. We had a great time at the park and hanging out with new friends and old. I love seeing all the progress the kids make.
Slides - 1/2 - This park only has 1 real slide and it is rather steep, so holly could not do it on her own. There were however a number of those "Back yard play slides" that the kids could use, but Holly didn't seem that interested in them.Swings - 1 - Yes. There were both Baby and kid swings, but only 1 baby swing, and Holly didn't much like waiting her turn.
Surface - 1/2 - There was some bouncy turf under the swing area, but it was mostly sand, and the outside circle was concrete, it would have been nice if that was turf too.
Shade - 1/2 - The edge of the park and near the slide was shaded so that was nice but it was getting very hot standing over near the swing which didn't really have any protection from the sun.
Climbing - 1/2 - There was the one slide structure, and then the other "left" toys that you could climb on, but it wasn't elaborate, or a lot to explore.
Parking - 1 - This was easy, right on the street, and next to the gate.
Bathrooms - 0 - None.
Distance - 1 - This is maybe 3 miles from my house. It was very close and easy to get too.
Friends - 1 - In addition to the friends we were meeting at the play ground, there were two little girls when we arrived and then a few other kids who came just before we were leaving, so it is a park that is used by the neighborhood.
Fun - 1- Even though this isn't the fanciest of parks and the structure is very limited, Holly had a lot of fun with all the other stuff that was there, the sand table and truck, and push toys, and light saber. i imagine also if she was older she might use the play house and other slides more, as she could climb up the "ladder" better. So she did have a lot of fun.
http://www.albanyca.org/index.aspx?page=590
I will end my post with this... I think it is so important to have a support network. I am making this a Fragile X Friday post because I want all the mom;s out there to know that some of your best ideas and therapies and friends may come from other parent's with kids who have special needs, but Fragile X isn't the most common, or even heard of Diagnosis, and I encourage you to look for other groups in your area, because regardless of the specific disability or "limits" or "delays" our child has, in reality they are all the same.. We are all parents on a special journey with special kids who are taking us down a path we didn't expect, and it is not the details of the specific issues that matter in the end, but the greater understanding of what it is like to balance and juggle 6 therapy sessions a week, whether to try and mainstream your kid, or keep them in a Special Ed Classroom, how to deal with Explaining the Difference to NT parents, dealing with the Bureaucracies and budget cuts and the Regional Center's and IEP's and The Doctors, and with not quite feeling like you fit in anywhere, because these kids are all so individual, yet even the ones who seem "High Functioning" or fit into "Societies norms" as one mom put it, may only appear so on the surface, but there parents deal with all the same feeling and emotions you do.. So find those parents, and form a community, and even if they don;t become your best friends, and even if you only meet once a month, you know there is a place you can go where you can let your guard down, show your exhaustion, and frustration, and joy, and your kid can be themselves, and the looks you get are that of understanding not judgement or sympathy. We all need a place like this, even if only on occasion.
If there is anyone local who wants to find out more about this specific Meet-Up group, you can do so here..
http://spclneedsparents.meetup.com/151/
But even if your not local, why not search Meet-up.com, maybe there is a group in your area, and if not, maybe you should start one.
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1 comment:
Hey, I saw this posted to Zac's profile on facebook. Thanks for writing about our group. Your comments about all the kids and parents are very sweet. We're glad to have met you, Holly, and Joel in the group.
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