Now that we are graduates of the ECSE program (beyond ages birth - five) in Dakota County, we volunteer to help organize and put on this retreat, because we really feel it's a huge benefit to young parents.
First thing when attendees arrive, they wander through a vendor fair to their assigned parent networking group. Networking groups are based on different types of disabilities. Mark and I facilitated a group of 7 couples, all of whom had children ages 2 and under who have very rare chromosomal abnormalities. Since they are so young, all of them were dealing with very recent diagnoses, and very fresh grief. One had had a diagnosis of Angelman syndrome for only about 3 months now. Another had a toddler with a form of dwarfism. Two of them had children with diagnoses that were tough to research because most of the time, children with those chromosomal abnormalities don't live very long. It was very heartwrenching.
Of those 7 couples, 5 had children who are fed through feeding tubes. A large portion of our discussion centered around feeding tube issues, concerns, and solutions. One couple had been rising every 3 hours, every night for a year since their daughter's birth, to refill her feeding machine.
The other couples with feeding tube experiences were quick to point out that you can load a feeding tube machine with a full night's feedings all at once. The mother was concerned that the formula shouldn't be sitting out for that many hours but the others assured her it was fine, as long as it was cold. She also expressed concern about the formula being too cold when it arrived at her baby's stomach. One of the other moms pointed out that once the formula travels through 4 feet of feeding tube, it's warmed enough not to bother the baby. All the other parents were running feeding machines all night long without a problem, and they told this other mother how to do it, and I could see how relieved she was. She elbowed her husband and said "see, I told you we'd learn something valuable here."
As a facilitator, it was really gratifying to see those people share knowledge and experiences and help each other out.
Another couple, whose daughter had been diagnosed with cat's cry syndrome, mentioned that they wished they knew of a family psychiatrist or therapist who worked specifically with families of special needs children. Later that afternoon, I was talking to another mom I know, and she happened to mention a therapist she had seen who was great with the special needs of her own family. I wrote down the information and when I ran into the couple from our networking group later before dinner, I was able to pass it over to them. I loved being able to connect them with exactly the type of resource they were looking for.
This is just a couple of reasons this retreat is so valuable to parents of special needs kids. These parents are often brand new to the special needs world and to be able to offer them guidance, as well as a place to sit and have a meal and talk about your children with other people who really know what it's like, is like a treasure. They really do go home better equipped to handle the challenges they face, which strengthens the family unit, and strong families benefit the community as a whole.
I benefitted from this retreat myself and still benefit from it, now that I'm a volunteer helping to organize it.
We stayed overnight at the retreat and managed to get upgraded from a very nice hotel room to a jacuzzi suite, which, I'm not going to lie -- was pretty sweet. And you'd think that after a nice soak in a jacuzzi that a person would sleep soundly, but that was tough to do after 11:30 or so when someone was knocking at our hotel room door. We ignored it, thinking that, if anyone really needed our attention, they'd call. My cell was on. The knocking persisted, however, as did our ignoring, until finally the phone rang. Apparently someone had requested the "romance package," and they thought it was supposed to go to our room. At 11:30 at night.
Awesome. Honestly, I don't even want to know what all is included in the "romance package."
I wanted to tell them I had only ordered the "sleep package," which they had now deprived us of.
Our excellent grandma & grandpa babysat the kids for the weekend, so we came home to an army of new toys and books. Aliza claimed, however, that she did not get EVERYTHING she asked for. I think they all had a nice time together. AJ must have had a nightmare, because he woke up in the middle of the night, upset, and couldn't shake it off. Grandpa brought him downstairs to rock in the recliner, which is kind of AJ's "happy place." He did finally relax there and allowed himself to be brought back to bed, looking over at grandpa once to say "no mom." Missed his mom. That kid is a little heartbreaker.
Thanks grandma & grandpa, for taking the kids for the weekend so Mark and I could have this experience, as well as have a breather from the kids. I really enjoyed not hearing The Monkey Dance, Dora sing "We Did It!" and Diego ask "Are you strong? Are you REALLY strong?" And I especially enjoyed not hearing Zack's complaining, nerve-shredding scream. Grandpa said he didn't do it all weekend while I was away. I guess he saves that one especially for me.
Word of the Week 27/1/2023 Walking #WotW
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