Our visit to the Down syndrome center

I apologize in advance for the late posting of our trip to the Down syndrome center. This week has been pleasantly full of activities from having my in-laws up for the weekend, to my wonderful shower hosted by my mom and sister, and nesting like a mad woman. So anyway, here it is…

Recently John and I had our meeting with Maria at the Eastern Pennsylvania Down Syndrome Center in Trexlertown, PA. It was a great experience learning about the facility and other information about Down syndrome including concerns we had regarding therapies, pediatricians, school issues, and more. What we didn’t know beforehand was that there are only three Down syndrome centers in all of Pennsylvania, two of which are within an hour of our home. How lucky are we? It’s amazing!

What was nice is that Maria, along with the three other part-time employees at the center, is a mother to an adult with Down syndrome. Maria was telling us the story about how she found out that her daughter had Down syndrome in the early 80’s. Obviously then there were no prescreening done for young mothers, so Maria found out 7 weeks after her daughter was born. Though there were suspicions, they needed to wait until the blood work was back before the diagnosis could be delivered. At that time, she and her husband were both living in North Carolina and they had to drive three hours to get the news, and she said that during the entire ride back home, she and her husband cried. Maria was unable to grieve the diagnosis before her child’s birth like we are able to do, but at the same time it comes with benefits. Maria was able to see her child and know that she was just like any other baby. Yes, she grieved, but she knew that her daughter was a baby first; a baby that needed love and plenty of affection. All the things babies need. It was very reassuring to hear once again that Wes will be just like any other baby.

After briefly telling us her daughter’s birth story, she shared with us the achievements that he daughter made.  After high school, her daughter wanted to go straight to work, and she did. She made a goal for herself to move out of the house by 25. Well, she almost made it by moving into her apartment with a friend the first day of April which was 22 days after her 26th birthday.  At 29, her daughter decided to go to school and she was accepted into a program at East Stroudsburg University where she was able to live on campus with other individuals with Down syndrome and various cognitive delays. She has been at the college for a year and a half now and even has a serious boyfriend as school, but Maria still doesn’t know what her daughter intends on doing with her degree. Sounds just like many other concerns held by parents! John was especially happy to hear this because when he thinks of Wes, oftentimes he looks into the future regarding his happiness, personal success, friendships and achievements. I focus a lot on the day-to-day plans and his first three years.

A lot was discussed in that meeting; most things we knew already through the research we did on our own, but there were some interesting things we need to consider and look into with more detail.

  • There is no guarantee that Wes will qualify for services. Say what!? Yes, a child with a non-curable disability can be denied services. Apparently, Wes will need to be at least 25% delayed in areas of speech and language, physical (fine and gross motor), cognitive development, social and self-help skills to get services. And, if he does fall in the category to receive services and then shows improvements where he no longer falls under that percentage of delay, services can be taken from us. Basically, if my son is higher functioning, he can get didley squat. That is so frustrating! It will be great if he’s higher functioning, but if he’s not at or near 100% of his capacity, then he is not at his full potential. I don’t expect scholarships coming from Harvard or Yale, but I do expect him to be given all the tools to achieve at his potential.
  • Since I live in Montgomery County and my school district is for Berks County, I have no flipping clue who I will be seeking out for services. {I remember when I first received the diagnosis, I contacted MCIU, and they told me that I will need to contact the BCIU (IU = Intermediate Unit: basically, the go-to place for special education services, early intervention, professional development, etc. in counties in Pennsylvania.)} What I do know is that Wes is eligible for Early Intervention services, but to what extent, I don’t know? It’s so confusing because according to this document, Wes qualifies under care from birth to 3 under “Known physical or mental conditions which have high probability for developmental delays (such as Down syndrome)” and is qualified for additional services from 3-Beginners (1st grade) because he falls under, “Metal Retardation”. But, with my research I found out that we will be going through Easter Seals for care from birth to 3. This is not made clear on the document above which makes everything look so easy, but it isn’t.  Maybe I’m just making a mountain out of a mole hill, but it really is overwhelming especially with dual-county citizenship. D’ah! Oh well, just need to call them again and figure out what’s going on. I’m just too tired lately!
  • We will have the opportunity to meet with a doctor from either (or both!) EPADSC or CHOP once or twice a year to reevaluate Wes’s progress, so at least I will have knowledgeable doctors on our side when and if we need to get a second opinion for services.

A lot to digest, but we’ll get there one step at a time. Honestly, the majority of these things we won’t be able to do anything about until he is here, so I might as well enjoy the next 7 weeks of pregnancy because after that, it’s a whirlwind! And I’m not even taking Ds into consideration here – all babies need a lot of attention. I’m still not sure if I’m ready, but really, do I have a choice in the matter?

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