Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, July 29, 2011
Wait, where did July go?
1. We spent today at the beach in Surf City so I am beat but it was a lovely day to spend at the shore. There was a whole lot more sand than last year (NJ has a beach replenishment program, or so I am told) so it was a longer hike from the car to the water, but a friend from church kindly let us use her shower before we left for home, so we brought a whole lot less sand than usual back to Mt. Laurel.
The waves were just about perfect for Alex, lots of crashing and fun, but the tide kept pulling him farther and farther away from where we'd parked our towels and chairs, so every so often, I would walk down the beach, drag him out of the water, and pull him along to back where he started. Miranda started out with her flotation device but got braver as the afternoon wore on and played pretty confidently up to her waist. It didn't hurt that Daddy got her a boogie board of her own.
We are happy beach people.
2. Alex decided to print out pictures of the planets this week and hang them up in the tent above his bed, and Miranda helped him do it. It turned out just beautifully.
I don't think they are in the right order, but who cares? It was his idea, he did the printing, the cutting and the hanging, with Miranda as his cheerleader. Way cool.
3. I am still slowly making progress. I plan to stitch all day tomorrow, more or less, to try to get caught up. I would really like to be done with page 19, which I'm going to start tonight, by the end of the week.
4. Marshall and I did see Cappy on Sunday night and we enjoyed it. The movie felt a little too short, though. There was an action-filled montage in the middle of the film that I would have preferred be expanded, but Chris Evans, as usual, was very appealing. Just right for the First Avenger. Of course, it made me want to see Thor again, which is all done in theatres. It does come out on video in September, though. We're saving Harry and Cowboys & Aliens for San Diego viewing.
5. Speaking of which, we're down to 2.5 weeks until our departure date, which is Aug. 17. I'm trying not to panic. Lots to do before then. I did get all the mulch spread, though. Now we just have to cut down the jungle growing in the yard. And get hair cuts. And, and, and, and....
6. If you missed it, my birthday was on Wednesday. It was actually a lovely day. I kinda floated through the day, ignoring my To Do list, stitching for a while in between supervising the children and then went to the Youth Group backyard tour event in the evening. We're having a big party in San Diego to celebrate 4 family birthdays, including mine, so festivities are just postponed.
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
And here's Jen.
Friday, July 22, 2011
Dog Days
1. If you didn't know the origination of that phrase, here you go. Oppressive Heat is another apt phrase. It's been so hot this week that even Alex, who previously seemed impervious to heat, is lying around inside instead of playing outside. Of course, my friends in Texas have been experiencing this for weeks. Now, ladies, I feel your pain.
2. My life is bonkers; this is a well known fact. So, in keeping with that, I picked the hottest week of the year to finally get around to ordering the mulch I needed for the front flower bed and my ailing dogwood that I'm trying to save. I even spent time yesterday (early in the morning and early in the evening) spreading it so that it's about half done. Maybe it's just me that's bonkers.
3. No, my kids are bonkers, too. So to keep them from doing something completely destructive today because they are so bored because they can't go outside because it's TOO DARN HOT, we're going to the Aquarium with a friend. For the most part, the animal exhibitions are air conditioned. And so is the car. I love air conditioning.
4. My stitching is going slower than I'd like because, well, my life is bonkers, and I'm starting to worry that I won't make my deadline. Maybe for my birthday (which is next week), my husband will give me a whole day to stitch. Here's the progress:
MUST GET IT DONE!
5. The bug fight goes on. There are less of them, yes, but still enough to annoy us. A new supply of poison should come in the mail tomorrow. Yeah! I like nothing so well as seeing the dead corpses of bed bugs being sucked up into my vacuum.
6. One of our favorite babysitters has agreed to come Sunday night so Marshall and I can go to the movies. Since our house isn't completely bug free yet, I've been hesitant to ask anyone over. It's unlikely he would take any bugs home with him, but still, it feels like having the plague. Anyway, I sweetened the deal by promising a nice roast beef dinner for us all together before Marshall and I leave for Captain America: The First Avenger. Yes, I know we haven't seen Harry yet, but we figure it will still be playing in San Diego when we get there next month and we can talk grandparents and auntie into babysitting for free.
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
And here's Jen.
Friday, July 15, 2011
Less Plagued, Still Tuckered Out
1. Took the children to the shore today so am feeling a little baked and plenty tired, so this will be a short post. We tried a new beach on LBI called Harvey Cedars Bay Beach and it was lovely. There was a fenced in area to swim and play so Alex wouldn't swim for Spain and Miranda wouldn't sneak down along the shoreline until she was lost from sight. I spent most of the 3.5 hours there in the chair, relaxing. Blessings on my sister- and brother-in-law who went with us and helped us have a great time. I should have reapplied some sunscreen, though. Alex has bright red cheeks and I have some red stripes on my thighs. I did take a long-sleeved shirt with me for when I was out of the water and wore it to protect me from the sun. And I still think a burkini is a good idea, even if it isn't socially acceptable. Dang.
2. Harry Potter opened last night, so I went to see Green Lantern. It wasn't the greatest superhero movie ever, but I enjoyed it. Ryan Reynolds is very appealing. We hope to see Harry next week.
3. There are fewer bed bugs on the premises. Just enough to be annoying. But we are starting to feel like we might see the end of this particular plague.
4. Not a lot of stitching progress this week; my hands and arms have been sore. Here's a picture, nonetheless:
5. Two dear friends welcomed baby boys out of their bellies and into the wide world this week and everyone is safe and well. Very good news.
6. I spent a lot of time this week on Facebook and playing Angry Birds Rio. Not a real productive week. Too tired and brainless.
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
And here's Jen.
Friday, July 8, 2011
Plague, Pestilence and Plumb Tuckered Out
1. Bed bugs are really pesky in that they are difficult to kill. And, apparently, finding Miranda's location more difficult to access, what with all the cleaning and spraying and dusting, they went in search of other food sources, like Alex's bed. And ours. Seriously gross.
So, on Monday, I noticed Alex had these really strange splotches on his shoulder and ankles. So we checked his bed and found signs of bed bugs. So we cleaned and washed and sprayed and flipped his bed back to the upright position, so as to make him less accessible. And we haven't found any new bites on him and the number of bugs in Miranda's bed continues to fall. However, when Marshall and I were looking at our own mattress later that day, just in case, we saw a live bug scurry off the mattress pad into the shadows between the bed frame and the wall. And we looked at each other and tried not to run screaming. But at least we know what to do: more cleaning, spraying, and wrapping the mattress and pillows in zippered plastic. All our throw pillows had a turn in the dryer on high and I did all of Alex's stuffed animals again, just in case. But I am weary of this battle.
The advantage of having young children that I can lie to is neither Alex nor Miranda know when they go to bed every night, a bug might bite them in their sleep. However, Marshall and I have had difficultly sleeping since Monday because we can "feel" the bugs crawling on us, a rather normal reaction like formication, because we know there are still a few bugs around. And I had a couple of fresh bites this morning. Ewwwww.
Since both my mother and Marshall are still checking Miranda's bed every night, after she falls asleep, for bugs to squash, I joked to him last night that I should set our alarm for 3 am to wake us up so we can check our own bed for bugs, unless they would hear the alarm and scatter. Somehow, my husband did not find this amusing.
The good news is that Miranda's body is recovering from the constant assault of we're not sure how long (we still can't figure out how they arrived in the house) and the numbers of bugs, dead or alive, that we're finding in her room are dropping. She just doesn't have a standard presentation and it really fooled everyone.
2. Alex went back to school Tuesday morning, thanks to ESY, the extended school year, courtesy of Mt. Laurel Schools. His regular teacher takes the summer off to be with her family, so he has a different teacher for the summer, but he seems to like her and is very cheerful when he gets on the bus at 8 am. And, amazingly, we did not get a lame summer bus driver like every summer previous to this, but a woman I know already as she had subbed for us during the school year, and she's wonderful. It just means that Alex and I are getting up at 6:30 so that he has time for a leisurely breakfast before heading out at 8; he is almost impossible to rush and it's just not worth trying, if you can help it. It's only 3 hours a day, 4 days a week, but it still helps tremendously.
Miranda, poor lamb, still doesn't understand why he gets to go to school in the summer and she doesn't. There's always a possibility that with her change of diagnosis that she might qualify next summer, so we'll wait and see. I have been watching her at the pool where she treats everyone she sees as if they are already her friend and every toy they have is hers to play with, too. She's been rebuffed quite a few times but it doesn't seem to discourage her. I'm not sure if this is a lack of maturity or simple the ASD showing itself more clearly. Or, perhaps, like me, she just doesn't get out much. And the events that we do take her to include a select group of people, most of whom are already prepared to help her out.
Regardless, joining the community pool is doing the things we wanted, exposing both of them to new situations that require social skills to navigate and giving them a chance to swim in a large pool that satisfies them sensory-wise. On the unfortunate side, it means I have to be in the water with them the whole time, in direct sun. I'm starting to think one of these would be a good idea. Of course, if I thought I was getting strange looks before just from the behaviors of my children, this would probably get me ostracized. But I wouldn't be sunburnt!
3. Although it has been lovely to have my mother here, and I'm not sure we would have survived all the excitement without her help, she came down with a cold over the weekend and I caught it, too, so we're both working at less than our usual levels of energy. However, we have been able to return to a habit we enjoyed of old, watching British dramas to pass the time while we rest and hope to feel better soon. Instead of the usual Lord Peter Wimsey, though, we've been watching Lewis and Poirot. Of the former, we've watched "The Dead of Winter," "The Gift of Promise" and "Whom the Gods Would Destroy." Of the latter, we've watched Death in the Clouds, Evil Under the Sun and After the Funeral (which has Michael Fassbender). Up for today are Appointment with Death and Hallowe'en Party. I watched a bunch of the David Suchet serials last year, so I am sharing with her some of my favorites as well as watching new ones.
4. Stitching progress has been slow this week, what with my cold and the not wanting to sit and stitch on my bed where my sewing light is because of the creepy, crawly feeling on my skin. Still, it's progress:
5. I did see the new Transformers movie on Saturday night, by myself, and it was alright. Bombastic and visually overwhelming, but Shia continues to be appealing. My mother came with me to the theatre and saw Cars 2, which she enjoyed. Marshall and I were supposed to go see it together on Monday night, but we were distracted by the pests. We'll have to schedule a babysitter for that sometime later.
6. True to our form of corrupting the young, we induced another of our babysitters to watch Doctor Who. And now he's addicted. This also happened last summer and that babysitter lost 17 days, as I recall, as she watched 5 seasons worth. And now this young man is in the same boat. :)
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
Bonus 8. How, you might be wondering, do we insure my mother does not take any bed bugs home with her? By operating in a state of total paranoia. Heat up all her luggage in the hot sun outside and in the hot car, run all of her clothes through the dryer, re-wash everything when she gets home (including what she wore on the plane) and pray really, really hard. Oh, Lord, have mercy on us.
And here's Jen.
Friday, July 1, 2011
God is Wild About You!
1. So we just finished 5 mornings at church, participating in Hope's VBS for the first time, and the program this year was Pandamania. And it was awesome! If you are friends with me on FB, you can look at a bunch of pictures my kind friends took of my darling children, since I never managed to walk in the building with my camera.
Seriously, though, my heart is overflowing with gratitude. Miranda really thrived in the environment, as we expected her to, as she is fairly easy to keep in line with a structured schedule of games, snack, crafts and learning activities. Alex was more of a challenge, as expected, but he had a wonderful buddy who helped to keep him on track and two teenage boys who were more than willing to corral him during the large group sessions when he'd rather be running in circles around the room.
The high points for me were seeing both of them standing on the steps in the front of the sanctuary, dancing and praising God, and hearing Alex talk about God listening to him and staying with him. Miranda has been absorbing the curriculum of her Sunday school class all year so it's not surprising to hear her say that God loves her or that God made the world. But Alex's brain is wired to see the world very literally and so a metaphysical concept, like Jesus loving him when Jesus is not someone he can physically touch, is a lot harder for him to grasp. Still, this kind of immersive experience was a great way to bring him to the next step of talking about God as well as help him work on those pesky social skills! God has certainly been very good to us this week at VBS!
2. Yes, we are still fighting the bed bugs in Miranda's room, although we are cutting their numbers down daily. Marshall poisoned her bed frame several days ago (see below), which killed at least 50, so was helpful, if gross. Yes, he still hovers over her with a flashlight after she falls asleep to kill some more (awesome Dad that he is since I can only face them in daylight) but I feel like we are going to beat them, eventually. But the laundry still continues....
3. 3 of the 5 mornings this week I was able to hang out at the church while both kids were learning about God's good gifts, and how He always loves us, no matter what. It was a wonderfully and unexpected peaceful time for me and I used it wisely, writing lots of post cards to the young women I mentor in the Youth Group. At least, for this week, they are getting more from me than my usual stream-of-consciousness writing about how my kids are driving me crazy and O, Lord, Have Mercy On Me! And it felt very satisfying to use this time to minister to others like this.
4. Stitching progress was slow this week due to general exhaustion, but I still made it to the bottom of the pattern last night. See:
I have about 5 weeks to finish it. But once I finish the stems, the changing colors every 15 stitches pain will stop and it will go faster. At least, that's what I keep telling myself.
5. I did a movie update a few days ago but had difficulties with the links. I still need to go back and fix that. I am planning to see Transformers: Dark of the Moon, by myself, either tomorrow night or Sunday. I'd go tonight if I thought I could stay awake that long. Alex was up late last night and Miranda was up early, and we had an exciting afternoon what with my mother's return, dropping off her rental car, and a trip to the doctor's for Alex, so I'm tired.
6. My mother has returned safely from her retreat in VA and is spending the next week with us. Thank you, God!
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
And here's Jen.
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