I realize I haven’t been posting in a long, long time. But I don’t feel super guilty because one of my favorite blogs in the world, House of Turquoise has been just as bad. By the way, you should go over to Erin’s blog – it is one of the best especially when you LOVE turquoise as much as I do. Like Erin whose hands got full with 3 little babies, I got full with my big babies.
Originally this blog was to be about my experience in the bridal business (love), life in general (meaning busy family life), home (what renovations and projects are going on in our lives) and finally, work – because my husband and I have been in the children’s wear business creating flower girl dresses (pegeen.com) together for over 30 years at a time when most marriages don’t last 30 months. Top top off all that, I am a pretty private person and don’t like to really put out there my life.
However, I decided that for my own sanity I need to unload from time to time. Therapeutic, yes but in hopes of finding more information it’s not a bad thing to share these things. I am a mother of two boys, one just got married 2 years ago and blessed me with my first grandchild a mere 12 months ago. It was lovely that at first, being a new graduate, he was feeling out several careers and one day, out of the blue, after living in California, he and he very pregnant wife decided to move east and live with us while we hoped Bill would join our company and be the start of the next generation. He, like his brother, suffers from Metabolic Syndrome and was found to have levels of insulin in his body 49 times higher than normal. It caused a lot of concentration and personality issues during maturing but lucky for me, he picked the perfect wife who is on top of it.
Having that little girl here for 6 months was so rewarding, and helpful too because my husband was suffering with some severe complications after an injury from Hurricane Irma and ravaged by Type 1 Diabetes. This resulted in many operations within the span of a year…. brain surgery (shunt), laser surgery to repair the bleeding in his eyes (more diabetes), a back operation for herniated disks, then the injury from moving sandbags (even though he sat on the dock, moving the bags of sand just a few inches) which resulted in a million dollar back operation. Poor thing, two major back surgeries in one year, the second completely dibilitating, taking 7 hours to unwind the nerve which had grown around his spine, cleaning completely blown disks and spinal fusion. So, having my son and daughter-in-law here to help move his body or help do errands and give us the pure joy of just having this brand new life to cuddle was wonderful.
Sadly though, a job moved one of them cross country and I haven’t gotten over the sadness since. Yes, I am always busy with our business but the support I got from my son was something else beyond description. It was a quiet respite and I never felt so happy everyday just to know that I had someone to take my mind off the constant worry.
But isn’t that what all moms do anyhow? Worry all the time? My youngest at school is an entirely different set of worry, as he has severe ADHD and being at an Ivy League school is, I am very aware, very difficult for him due to the amount of work load and the fact that it takes him 4 times longer than a normal student. EVERYTHING has to be perfect for him to start. We didn’t do drugs – or as he said at age 4 – “why drug me – I may be needing a high level of security clearance and I am far too young to be able to make those decisions.” Imagine that was my 4-year-old telling the doctor who tested him! This is an entirely different subject and I will someday go into everything I have learned and read. I will BRIEFLY say there is a brilliant series of Ted Talks by a Dr. Russell Barkley (books too) that help the three of us (me, his dad and my now-adult student).
My husband has a really hard time understanding it all – little things like – “why doesn’t he just write it down?” but now at 24, we still go to move him in and out of the dorm because that takes too much organization for him and found it impossible and I help with appointments etc from afar. And no, I am not a helicopter parent – more of an Administrative Assistant (AA). Next year, because we can’t afford a full time aid, we are going to get an apartment at school, his senior year, just to help make it easier on him and from time to time, one of us will stay there with him to assist with what normal kids can do on their own. He just needs a full time aid at certain times and I found from the learning center at school, we will be one of three parents doing the same. That’s my forever focus for him.
My dad used to tell me, your job (during college) is to be a student. So many tasks are difficult for him because he is just like the Rabbit in Alice in Wonderland – never enough time. So, if Jim or I can just be up there to make sure he gets his shopping done, or trips to the drug store, or just helping with the organization, it’s what we plan to do. Ah the miracle of remote offices and laptops.
Our job has always been to help him be ready for life on the outside of school but the Ivy League is very demanding and if he were in the real world, he would hire an AA. So we are helping to make systems for him that I suppose we will just help in training his AA once he gets a job. He is brilliant, utterly brilliant and anything we can do to help him become “one” with his disability, the better. When my son finally decided in college to start taking these drugs and began to better understand their workings, it became a bit better but it still took us 5 years for him to find a doctor who works scientifically with Adult ADHD. I forget the scale but if it were 1-100 on severity, he is about 105! Best thing we did was to hire an executive coach we found at school for him, (that’s what she calls herself but really it’s an ADHD coach – and it has helped quite a bit on most days.)
It reminds me of the time when beginning in 6th grade he and his guidance counselor would sit on the floor with his back pack and just help him get organized. By the time he was in 7th, we hired someone who worked a few hours on Mondays just helping with “systems” – learning aids that helped him to organize, setting up assignments and so forth. By 8th grade, they met Mondays (to set up the week) and Fridays as a de-brief. We started a year ago with his executive coach and even though he didn’t feel he had the time he commented after a session a few days ago about how he felt upbeat meeting with her as they just resumed post-midterms. Of course, by today it’s a struggle again however, it is a constant effort and that is what I believe is so hard for ADHD folks – the willingness to start again after failure, even if the failure is to forget to bring your calculator to an exam. I have learned that patience and always remind him, (as I am his AA right now) – I am not here to judge, just to assist (as I remind him of something that you and I would not have trouble remembering. The Metabolic Syndrome doesn’t help either because it causes memory problems.
He has many other issues as well and I am just burst with pride of his willingness to get back on his horse, so to speak, most time – as I am of both my two kids. His insulin level was 80 times higher than the norm and has some other issues that just complicate his life. We are plowing ahead though.
SO, with all of this piling on, I still manage to mostly keep humor about it all. The stress level for me is really relieved however by getting over to Disney about as much as one can. One thing we do there is go to the lazy river and walk, not float, and I especially like Typhoon Lagoon because it is deeper than Blizzard Beach. Research found that the resistance we get in our water walks is 4 times more resistance so I get through the exercising faster I suppose. Disney has that wonderful effect – it keeps me from going off the deep end, as if there was ever a deep end for me – and I find it brings my blood pressure down at least 20 points.
Anyhow – lot easier than sweating like a pig in Orlando temperatures!
That’s all for now.