Category Archives: Nonverbal Learning Disorder
Some days, I almost forget — ALMOST — that I have an autistic child. My son Grant will be 13 in August, and was diagnosed more than nine years ago with Nonverbal Learning Disorder, which many consider to be on the autistic spectrum. It is very akin to Asperger Syndrome, but with fewer of Aspies’ fixations, and with added fine and gross motor skill problems. (An EXCELLENT article, differentiating between NLD, ADHD, and Bipolar Disorder, concentrating on NLD can be found here — it’s a PDF.)
From the bottom of my heart, even though we have ongoing difficulties with Grant (see below), I believe he is so, so, so, so, so, so, so much better than he could be, as a 13-year-old*, and the biggest reasons for that are:
- The presence of God in Grant’s life, and
- We homeschool.
A reader just asked me a question on an old post. I don’t know if anyone really tracks comments via the sidebar on the right, so I thought I’d turn it into a full-on post. I’ll quote her first, then quote my response. What I replied is kind of sloppy; not as carefully-written as if it were a “real” post… But I thought it merited its own blog entry.
From reader Canadian Mom:
I am in Canada and stopped hs’ling my son after 3 months of grade 1, before that Kindergarten. I found a sweet country school to place him in with just over 100 students and he is just finishing grade 2. He has NLD, ADHD and DCD (developmental coordination disorder). I love him dearly but he is a handful, he’s not diagnosed with but I think he is ODD. He fights me and resists me on nearly everything. It’s very challenging, I’ve had to do a lot of personal growth just to handle him.
I did put him on med’s and his teacher thinks he is doing great at school in reading and related subjects, however math is his great weakness. In grade 4 they do the PsychEd tests so I am thinking of keeping him in until that test is done and we have a really clear picture of what we are dealing with. Ideally I would hs and if I have the guts to eventually I will take him out to hs again but I’m kind of waiting for him to “hit the wall”. He gets a lot of support at school and seems to enjoy it. However, because of his DCD he stays away from sports so is alienated from other boys at recess and lunch and plays with another girl who has some learning disabilities. I would love to know more about your methods for hs’ling your NLD boy. I want to hs my boy but am afraid of all the resistance I get and it effecting our learning outcomes.
I’d love to hear your thoughts.
My really long response:
CM ~ I’m not sure I have any amazing words of wisdom. I will confess that with my five children, aged 3 – 15 (my NLD boy is almost 13), he is my most challenging on just about every issue. Things are so much more peaceful, and everything — I mean EVERYTHING — goes so much more smoothly when he is not here. So, I’m not saying, “It’s SO EASY to homeschool your NLD child!!” I do maintain, though, that it is most often better for the child. This past school year, I came VERY close to putting my son in a special, advanced program, like a school-within-a-school, very hands-on, very science-oriented, low teacher-to-student ratio. I gathered all the info, talked with admin at the school, and they were VERY supportive of me sending in our app. In fact, when we didn’t, they called often to ask why we hadn’t. But, my husband said, “We’re not going to throw him to the wolves.” Meaning, for all his brilliance, and for all the difficulty he causes at home, and all the literal heartbreak and distress I go through…. he’s still so vulnerable. I finally had to agree with my husband’s statement. It would be throwing him to the wolves. Socially, he’s just not adapted to a school atmosphere. I could see the huge likelihood of us sifting through issues with children, teachers, admin, just the “system” of school, and coming up bloodied in every way. Know what I mean? For all that it would be a huge relief for me NOT to have to homeschool him (and I’m being really honest here), I just couldn’t, for his emotional and physical health, do it.
Grant isn’t diagnosed with ODD, but I’m sure I could obtain such a dx. His operational outlook is, “I’m right, you’re wrong,” and it doesn’t matter who the other person is — parent, pastor, friend’s parent, policeman, whomever. He — deep in his heart — thinks that he is the most brilliant, best person in the whole world, and that his outlook is the only one right, and the only one valid. He’s certain that his ideas trump mine, and has no value, respect, or even acknowledgement of authority.
He’s not dx’ed with DCD, but he was in OT for YEARS due to fine and gross motor skill problems, and he is very uncoordinated. We’re more likely to call it PDD, here in the States, although I think that name was changed recently… But, same thing: He can’t do team anything. He’s eager and willing, but a liability to teams.
So. With that bleak picture, why do I homeschool? I still think it is his best chance to learn from someone who truly loves him and is FOR him. I can let him study ahead in some areas, and supplement him in areas where he lags. I can provide the structure and discipline he needs. I can help bring out his BEST and weed the garden of his heart to help his character develop, something that schools don’t really do; they just want kids to be functional within a classroom setting. I want him to be much better than “functional”. I want him to flourish. AND, while I will say that we still very often struggle with his lack of respect and his preschool-like behavior, we have had LOADS of break-throughs this past year, and he’s doing better in many areas in which I had previously nearly despaired. He is *healthy*, emotionally. He has lots of friends. Most of them are younger than him, but still, lots of friends. He truly loves God. He is eager and willing in so many areas, and is so often an encouragement to me. He TRIES in many areas. For instance, he’ll often ask me, “How are you doing Mom?” with a rub on my shoulder, and a soft face, and cocked head. Now, he’s asking that because I’ve taught him that people like others to care for them, and he needs to take time to be attentive to others. I can see him mentally go down the check list: Ask Mom how she’s doing; give her a soft smile; rub her shoulder; look into her eyes. Check, check, check. IOW, it doesn’t come naturally to him. But, in many ways, that makes it MORE valuable, because the things we’ve taught him — often repeating it THOUSANDS of times, to no effect — are finally bearing fruit. I can actually look at his future, and see some hope and if we can keep his shoulders pointed in the right direction, he’s not going to self-destruct; he’s going to be a tremendous asset to his future family, to his community, to the Body of Christ, and to the world in general.
Please don’t wait for your child to “hit the wall”. It’s so much easier (not that it’s easy) to practice “preventative medicine” than to rehab hearts and behaviors.
*Nonverbal Learning Disorder has the highest rate of suicide of all learning disorders, and it spikes radically higher in the teen and young adult years. I can’t find numbers on it right now, but I’ve read that the rate is as high as 60%. By the grace of God, and with the wisdom He has given to my husband and me, and through love and understanding, that WILL NOT be my child.
So, my dear husband came home from work tonight with a monster headache — migraine-y, wanting to lay down and hold his head very still, lights off… Perhaps only the second migraine of his life. I gave him some Tylenol and water, and hurried him off to bed. Distracted, I was, by dinner preparations… Minutes later, as I was feeling badly for not being very attentive to my hubby’s needs and pain, I went into the bedroom to check on him. Audrey was standing by his side, and had put the Kleenexes next to his head — just in case. She had the idea to get the ice packs for his neck, as that was hurting as well. She had already prayed for him — her idea — and as I stood there, she kept a gentle hand on his head… Gave me hope, that did, for that crazy, rough, rowdy, smart-as-a-whip, loud little four-year-old. It made me remember when I was 36 weeks pregnant with Fiala and ill, and Audrey took care of me by covering me with her favorite blanket and commanding, “Now, suck your thumb!”
I sent a text to Martin’s small group leader, letting him know that Martin would likely not be in attendance tonight.
Martin borrowed Ethan’s old MP3 player which has some great worship music on it, and plugged in.
About 45 minutes later, Martin staggered out. Either prayer, Tylenol, worship, a profound sense of responsibility (he’s the worship leader for his small group), or a combination of those allowed him to rouse to his feet and head out the door, our 13-year-old, Ethan, carrying the guitar. (The small group meets at the home of one of Ethan’s friends; he accompanies Martin most weeks. Ethan and his buddy play video games pretty much nonstop during their “time together”. The ideas about what constitutes relationship are much different between a mother and her teenaged son.)
A short time later, I put dinner on the table for myself, Fiala, Grant, Wesley, and Audrey. Fiala had been fussy all evening, but that’s common after a late nap, as today’s had been, as we had been at a park with a number of other homeschooling families, during what would normally be Fi’s nap time.
Early into the meal, it became apparent that Fiala would rather go back to bed than eat, so I gave the other children some instructions, and went to put Fiala down for the night. She kept saying her tummy hurt. “Uh oh,” I thought.
I returned to the other three children, and fielded a somber report from Grant that, in my absence, Audrey had been speaking something so dastardly that he could not repeat it. After assurances that Grant would not get in trouble for repeating what Audrey had said, and more than a little curious, I asked him to divulge what had happened. “How bad could it be? She’s four,” I thought. I won’t write it here, but suffice it to say, it was startlingly crude, disrespectful, and downright ugly, and all of it had been apparently directed at me.
I was hurt and disturbed, and decided that Audrey needed a spank. (Yes, we spank on occasion. Wooden spoon. One to three whacks. Then, kisses, forgiveness, love, and reassurance, restoring the relationship.)
After I spanked her, we sat talking. I felt a need to know what was going on in her little mind, why she could say what she had about me. She started out by telling me that her brothers had made her say it. I knew it wasn’t true, but I just kept calm, kept my voice gentle, made sure I was motivated by love and concern for her and for our relationship. It turns out that she had had a bad dream about me the previous night, and in her little heart lurked offense, hurt, and even fear over how I had treated her, in the dream. Saying yucky things about mom behind her back was her way of “getting back.” I gently assured her that I would never, ever, ever do what I had “done,” in the dream — tossing her bodily out a window, telling her that I wouldn’t keep her any more, and that I didn’t love her.
We were both in tears, Audrey apologizing with sobs, and me holding her close and loving on her, making a mental note that perhaps she needs more attention from me… Since I do structured school with the boys, and Fiala is the “baby,” honestly, Audrey gets short shrift many days.
Audrey, who thinks she is the bomb, quite certain that her external prettiness is the trump card that allows her to do anything, only very, very rarely acknowledges her sin — not too surprising for a four-year-old. She then leveled me by telling me that she was afraid the dream would come back because her heart was “crooked” and her crooked heart would tell her brain what to dream, and her brain would tell her thoughts, and that she would dream the bad dream again. We then had the most heart-to-heart talk ever, about how only Jesus can come in and heal crooked hearts and make them soft and kind, and that He can bring His goodness to her brain and her thoughts, and that He LOVES it when little girls ask His forgiveness, and that He delights to come in and fix crooked hearts…
Part of me wanted to assure her that her heart wasn’t crooked; it breaks my heart to think of a preschool-aged wisp of a beautiful girl bearing anguish over her “crooked” heart. However, I fully remember when I was four, and one Sunday morning, somehow, in an instant, becoming aware of the blackness of my sin, and feeling the weight and the depth of the guilt of it, and knowing that I needed salvation. Though I was only four, the absolute tearful, distraught conviction I felt needed a true… release, a true healing, and I’m so glad that my Sunday School teacher, Mrs. Hammons, took me very seriously, and tenderly took me onto her knee and led me in prayer confessing my sin and asking for Jesus to come into my heart.
I just knew that Audrey didn’t need reassurance from me. She needed Jesus.
It was beyond touching, how very sincere she was, and how she obviously felt the depth of her error, and how she acknowledged that it was beyond her, and how relieved she honestly was, that Jesus would come in and heal her. She prayed a sweet, simple, heart-felt prayer, asking Jesus to forgive her for saying ugly things about her Mommy, for lying (she even threw in a bonus confession for another lie I didn’t know she had told), and asked Jesus to heal her crooked heart.
Then, as Audrey and I tearfully clung to each other, from the other side of the house, Fiala started throwing up.
I wrapped up things as quickly as I could with Audrey, ran past the boys at the kitchen table, wiping my eyes, and burst into the girls’ room, where, sure enough, there was my little two-year-old, in tears and muck, saying that she had “hiccuped yuck.”
I got her cleaned up, and Audrey sat with Fiala, singing sweet songs to her while I changed Fiala’s sheets and started the load of laundry…
Twenty minutes later or so, after I had tucked both girls in for the night, and re-prayed for both of them, I left the room with a sigh and a prayer of my own for their sleep to be peaceful in every way.
I stepped back into the living area of our home, and my 11 year old, Grant, piped up, “Can Wes and I take turns playing on the computer?”
Not, “How’s Fiala?” No, not a word of concern for either sister… just looking for the computer time he always feels is “due” to him.
I had to work hard to keep my voice even-keeled, as I expressed to him that I understood that though he has a hard time with empathy for others, he needs to understand that absolutely no empathy is really not acceptable, and that if he can’t bring himself to care about others who are spanked or crying or throwing up, the least he could do is just keep his mouth shut.
Perhaps I over-reacted. I was just gob-smacked that, after coming up from the depths of emotion and deep spiritual issues and tears and throw-up, Grant’s first thought was, “I want computer time.”
Still, I think it was a good night.
Now, I’ll go eat my dinner and read a book.
A few minutes ago, getting Fiala ready for a nap, she spied some white fluff on the bathroom sink. “Mama, may I have a sof’, sof’ kitten ball?”
I hand one to her, correcting with a hearty laugh, “They’re cotton balls, not kitten balls.”
She gives me a mischievous look, grinning while stroking her cheek with the “kitten” ball, “Mee-ow, mee-ow.”
And this is awesome. I could easily see myself having a very similar conversation with Grant. (My son Grant has a learning disorder that is very much akin to Asperger’s Syndrome. It’s called Nonverbal Learning Disorder, and it’s like Asperger’s MINUS obsessions, but with the ADDITION of fine and gross motor skill issues. He was diagnosed when he was four, and is now 11.)
Grant. What a unique kid.
I’m considering getting him re-evaluated this summer, as it’s been a couple of years since we’ve regularly seen his developmental pediatrician. When he was four, he was diagnosed Nonverbal Learning Disorder, which, according to the developmental pediatrician, even though it is not classified as such in the DSM-IV, is considered by most “experts” to be on the autism spectrum, as a high-functioning autism. (NLD is very much akin to Asperger’s, only without the fixations/obsessions, but with fine and gross motor skill problems.)
One of the questions that the doc always asks is about whether or not Grant’s behavior interrupts family life. I never know how to answer that. The way I see it, for better or worse, Grant’s behavior is part of our family’s life! Still, on days when he’s not present, like today, when he spent the night at a friend’s house, our home is markedly more peaceful.
Grant is… inflexible, and his focus is nearly always* on himself, so there tends to be an uproar when he enters a room in which other people are doing things that aren’t Grant’s idea; he wants all games to those of his choosing, with his own “special” rules that favor himself; he wants all TV shows to be of his favorites; when something happens that has even a slightly negative impact on himself, he’s sure that the offender purposefully set out to harm him; people have private conversations and he inserts himself in the middle, sure that either a) the conversation is about him, or b) he has something of value to contribute… His reactions to situations that aren’t to his liking are generally of the “fit” variety, more suited to a preschooler than to an intelligent young man of nearly 11 years — lots of noise, tears, lashing out verbally, accusations, stomping around, scowling, arguing, etc.
So, yes, all of that is disruptive, but it’s not like it’s out-of-place in our home; we’re used to it**. And, I rarely feel unequipped to deal with him, so it’s not like it’s a problem.
So, from the “we’re used to it” mindset, I typically don’t proceed through my day being really aware of the things about him that are different from most other kids.
A couple of interactions happened, recently, though… Grant wasn’t even present on either occasion, but in both events, I was struck with the realization that, yes, Grant does have autistic tendencies.
Writing with pen and paper is just so much more visceral than typing on a computer. I have heard of writers who favor the old-fashioned typewriter for their works, as well. I can easily picture that. Though (obviously) I blog frequently (or, frequently in spurts), sometimes I just need to get something down on paper, by hand. (Edited to add: I started this post out this way, as I was going to type out a couple of journal entries I’d written… then, I hijacked my own post and took it in somewhat of a different direction. So, this first paragraph has little bearing on the rest of the post. Or, maybe it doesn’t… )
Recently, I have been considering the progress of my 10yo son. Grant has Nonverbal Learning Disorder, which I explained in probably too much detail in this recent post. In it, I was encouraged by some progress he’s been making, just becoming more alert to the world and the people around him. Additionally, this week, I journalled some encouraging signs about Grant…
However, in the face of all these warm fuzzies, reality comes and whacks me upside the head. This week has been FILLED with frustration with Grant. He, highly intelligent, is convinced that he is always right, and that anyone who disagrees with him — parents included — is obviously wrong and that his intelligence is a trump card over authority’s obvious wrongness, releasing him, he feels, from righting his behavior, accepting correction for school work, obeying pretty much anybody, and so on.
Among other unpleasant scenes this week, he had a complete meltdown when I gave him some correction about writing dialogue.
I love writing. I think Grant has the potential to be a fabulous writer. He is truly creative, and his natural take on the world is from quite a different angle than how most see it. For his age, he is extremely well-read in both fiction and non-fiction. He has a solid grasp of grammar. He has a great sense of humor. All of those things could add up to a best-seller someday.
However, I’ve been trying to explain to him that when he writes, unless it’s for personal journal use, it needs to be in a form where people can understand what he’s written. It needs to communicate. In other words, writing unpackages and opens up the the world of the mind of the author for his reader. But, if there are gaps in explanation and leaps of assumption, in addition to structural errors in the actual writing itself, then people are not going to be able to appreciate what he’s written because they won’t understand it, and/or won’t take the time to slog through his written work to decipher what he meant, which is often not apparent upon first (or even second or third) glance.
I’m not able to convince him that my desire is for him to be a better writer so that people (both now and in the future) can better appreciate him. All he hears is that he’s done it wrong, which he rejects.
But, maybe God had me recall to mind several encouraging things, lately, about Grant so that I wouldn’t lose it altogether and become a bundle of frustration, banging my head against the nearest solid object. It’s hard, though, for me to see the big picture at times, when the daily details are whipping me.
Lord, help me.
My son Grant, who will be 11 in August, is showing some encouraging signs.
Parenting him has always been a challenge, because of his Nonverbal Learning Disorder, which is (depending on which doctor you speak to) essentially a form of high-functioning autism, where his world revolves around HIM and HIM alone. He has no filters for, “How would this affect others?” and many of the discipline issues we deal with, with him, are strikingly similar to the issues about which we have to correct Audrey, who is newly-turned 4 years old. It has always been extremely difficult to determine what is an area in him where he needs correction/discipline, and what is an area where he truly, honestly, does not understand, and he just needs more and more and more teaching. I will freely admit that it’s been discouraging and frustrating to say the same things, over and over to him, on a daily basis, many on a multiple-time-daily basis, for — literally — YEARS. (Things like, “If you sow bad seeds, you reap bad fruit. You can’t do the wrong thing and expect good results from it.” Along the same lines: “You just did the same thing that you did one hour ago, for which you received discipline. Why are you surprised that you are receiving more discipline? If it’s not OK an hour ago, or yesterday, or last year, it’s not OK now, either. Please expect to be disciplined if you choose to do something that you know is wrong. Please stop being surprised that your parents correct your poor behavior/attitude.” Or, “You may not change the rules in the middle of the game to favor yourself. You cannot cheat to win.” Or, “You can’t rip a toy out of someone’s hands just because you want it.” Or, “Just because you got hurt while playing with others, it’s not necessarily because that person harbors ill will towards you and that s/he meant to hurt you. It was an accident.”)
However, in recent weeks, there have been two events that have brought great encouragement to my heart, and hope that he just may be starting “get” it, and that all of what we’ve sown into him might not be in vain.
The first is this: After a meal, he picked up his brother’s plate from the table. Now, this may not seem like a big deal to you, but it was HUGE — HUGE!!! — to me. First, he noticed that his brother had mistakenly left his plate on the table after lunch was over. Secondly, he said to himself, “I can remedy this situation.” Thirdly, he DID something about it. Huge. I was in shock, and gushing with my appreciation and encouragement and thanks for Grant’s gesture.
The second thing was: We were preparing to depart for something, and Ethan, who is my right-hand-boy, was not at home. So, over about a 20-minute time span, I rattled off a series of instructions — one at a time; he still has a very difficult time assimilating multi-step lists or tasks — “OK. This needs to be done.” Grant did it, then came back to me for for further direction. Whatever I asked, he did, and did well. He stayed alert, waiting for instruction, and set himself to the task with focus. He actually helped us get out the door. Again, I was in shock, and gave copious thanks and encouragement to him. To the best of my memory, Grant has never done this, previously. Usually, he shirks tasks, makes himself scarce when he’s needed, whines when put to work, and has a general attitude of, “If I didn’t make the mess and/or if the effort doesn’t directly profit me, I won’t do it. Or, if you make me do it, I will conjure up the most wounded attitude, because, obviously, you’re being unfair to me by making me contribute to the welfare of the family at large.”
I confess I have, many times, extrapolated his 10-year-old attitude, and come up with scenarios that aren’t pretty, about his life as an adult. Obviously, we still have at least eight-ish years remaining with him in our home, and one would hope to see him grow in maturity. However, there have definitely been times where I have despaired, and thought that he would never get it. And, this isn’t just idle hopelessness; it’s based out of seeing years of instruction matter not one whit to him, and reading case studies of adults with his same disorder (which I have since stopped doing — there are a number of new books out on Nonverbal Learning Disorder, and I tend to find them highly discouraging), because for many of them, the lights NEVER turn on that they live in a world with other people who are at least as important as they are; many NEVER learn to prioritize others, or act in a manner that defers to others. I have prayed many times that this would NOT be my son, and continually ask the Father for wisdom in my parenting of Grant; I refuse to believe that he’s just going to be a “statistic.” Still. It’s hard on a mother’s heart to deal daily with the same issues and never see growth.
So, even these small events are treasured up in my heart, and I’m thankful to the Father for giving me encouragement regarding my dear son.
Grant went grocery shopping with me last night. As far as shopping company goes, I actually prefer my oldest son, Ethan. We chat, catch up on things, laugh, and generally enjoy each other’s company. But, Ethan is also valuable at home, and most often, my hubby prefers Ethan to stay and help out when I go on errands, and I don’t blame him. I’ve told Ethan that when he eventually gets a job for himself, he’ll likely think, “This is a BREEZE!” because we work him so hard. I felt (maybe still do feel) a little badly about that, until talking with a dear friend from church — a man in his late 60s — who praised this approach; he’s a fan of teaching boys to WORK, and was convinced we are doing Ethan a great service. That made me feel much better.
At one point, something occurred when shopping with Grant. I had the cart headed in one direction, and for one reason or another, decided to reverse course 180 degrees. Grant saw what my intentions were, and moved himself out of the way to allow me to move, on his own, without me prodding him verbally or on the arm or in any other way. That may not sound like a big deal — but him anticipating the event, being aware of what I was trying to do, being aware of his need to move out of the way… that was all MAJOR to me. Huge deal. Huge growth. Huge maturity.
I came home very encouraged.
Late last night, I was catching up a bit on blog reading, and came upon this honest and meaty post from Laura at LaFianzoo. It brought me back to little-bittyhood with Grant, who is now 10. Laura talked about her 5yo daughter, who has sensory processing disorder, or SPD, and who screamed for pretty much years at pretty much anything and everything, and who still has significant struggles. Opposite of Laura’s concerns, I knew something was wrong with Grant because he was lump-on-a-log for his whole first year, almost completely non-responsive. He didn’t cry when he was hungry, even. He did stare out at the world, seeming to take it all in, but he was very much in his own world. He did have some major sensory processing problems, and ended up being diagnosed with something called nonverbal learning disorder.
NLD is difficult to explain — basically he was not processing correctly anything that was NOT verbal — if it wasn’t WORDS, he wasn’t getting it, and you’d be AMAZED at how much you learn and communicate nonverbally until you’re face to face with a child who cannot nonverbally communicate at all, nor understand others’ nonverbal communication. NLD also affects/affected his motor skills both fine and gross. Though it’s not “officially” classified as such, our developmental pediatrician considers NLD to be a form of high-functioning autism, very similar to Asperger’s Syndrome (but with more motor problems and less-intense fixations).
Grant was 4yo when we got that diagnosis. Previously, I had been one of those parents who used to say that I hate labels because I didn’t want my kid put in a “box”. However, after Grant’s dx, I TOTALLY changed my mind. Having a name for NLD gave me a window into the heart and mind of a child who was totally unknowable, and who (literally) did not know that I loved him, who would stiffen up when I tried to hug him. Additionally, it helped me understand why he was bruised from head to toe. Understanding the process of cause and effect comes from NONVERBAL learning. Grant would just walk into things instead of around them. Even BASIC cause-and-effect like, “If I put out my arms, it will break my fall, and I will be less-injured” was beyond him. He also had sensory processing difficulties; among other things, he went through quadruple the clothes that everyone else did, because if he got a spot of water on it, it came off and he’d put on new clothes…
BUT, in some ways he was brilliant — taught himself to read at age 3yr 2mo, and no one could believe he has a learning DISORDER, so even to this day I’ve told very few people, because they just don’t understand, and it’s too hard to explain briefly.
Reading Laura’s post brought me back to the most difficult of times with Grant. In some ways, that was a really good thing, because I can recognize how far he’s come, and how much I’ve learned as Grant’s mother. It reminded me that GOD KNOWS that Grant needs my husband Martin and me; Grant was created for our family. I was also reminded that all the things I’m sowing into him now WILL BEAR FRUIT.
We have probably 75% fewer problems with Grant than we used to. Maybe 80%. I still get caught in moments of despair over him and fear for his future. In a number of ways, he has less maturity than my 3yo. There are still things about him that bring myself and my husband to great frustration. HOWEVER, there are also many times when Grant seems 98% normal (“neuro-typical”) and I can totally see the light at the end of the tunnel, like that five-second Episode of Hope at the grocery store last night.
Still, reading Laura’s story also reminded me of some tough things: I still lack joy in being Grant’s mother 95% of the time. It’s still a challenge for me to appreciate him; it’s not spontaneous in my heart like it is for my other kids — I have to remind myself to appreciate his good qualities, I have to remind myself to hug him, I have to remind myself to tell him kind things and tell him I love him — because there is such a hard history (and very often a hard day-to-day) with him.
BUT, I am still convinced that he is a supernaturally, God-gifted, amazing child who will be an amazing man of God and do something fabulous that this world hasn’t seen before — he’s so outside the box, and the world needs people like that, even if it’s hard on their mother’s heart.
Schooling with “disabilities”, antibiotics, Silly Putty, dinner guests that make me nervous, and a storm
- I am so thankful that, as homeschoolers, we don’t have to wrestle with other parents, teachers, school administrators, district policies, etc., to tend to my nearly 8yo son’s severe peanut allergy and celiac disease. I’m part of one Yahoo group for Phoenix-area families with celiac disease, and a different one for those with severe allergies. This time of year, the biggest topic is how to keep kids safe at school — tips on dealing with teachers, copies of letters to send home to other classroom parents, detailed descriptions of 504 plans, pleas for help… Each time, I want to respond, “OR, YOU COULD JUST HOMESCHOOL!” but I don’t. People often comment to me, “I don’t know how you do it!” regarding homeschooling. I respond similarly to them. There is no way I would want to trade the peaceful, simple process of homeschooling — with barely a thought for Wesley’s “disabilities” — for the fear and fiasco of schooling him in a classroom setting. Plus, it would be all that times two because Grant has a learning disorder (very akin to Asperger’s Syndrome, but without the obsessions, and with fine and gross motor skill problems), and we’d need a 504 plan for him, too, and an additional IEP. No way, thankyouverymuch.
- I caved. After treating Fiala’s staph infection with honey for three days, I gave up. Did it work? I think so. But, the… peripherals were too much for me. The longer we had her bandaged, the more annoyed and less cooperative she got with the process of nursing her wounds. Even with keeping long pants on her, she kept pulling the bandages off, which meant I was repeating the process about 4x/day, and changing her pants 2-4x/day because they became sticky with honey. AND, she developed a contact rash from the bandages — of which I tried three different kinds (plastic tape with nonstick pads, paper tape with gauze pads, and big Band-Aids — with and without additional gauze). So, on the back of her legs, in addition to the “normal” eczema, and the lesions from staph infection, she now has an additional red and prickly rash from the dumb bandages. There probably is some kind of non-adhesive sleeve-style bandage that would work for her, but I didn’t feel like I had time to research that and find it and try it. So, I went and picked up the Omnicef prescription last night.
- To add to the files of “Things I Never Thought I’d Have to Do as a Parent,” please add: irrigating my 10yo son’s ear to get out a wad of Silly Putty. At first, I thought it was a big chunk of wax, but when it finally came out, I saw it was a pebble-sized ball of Silly Putty. He insists that he has no idea how it got in there. Hm. Then, he “remembered” trying to make a casting of his ear. All of this with Silly Putty that was not his, and that he was not supposed to touch.
- We are having dinner guests over tomorrow night, and I am irrationally crabby about it. It’s a family with whom Martin used to live, before we got married. I have great appreciation for them as a family, but the wife — really, a fantastic woman in a multitude of regards — has always made me incredibly nervous. She’s the kind of lady who brilliantly excels at all the things I do poorly. She’s very ladylike, and her home looks like a museum. A spotless museum. A spotless museum that looks like it was decorated by Martha Stewart. I am confident in my cooking abilities; I’m sure everyone will enjoy the food. Their youngest daughter gets along wonderfully with my boys. The husband is dear and thoughtful and funny… There are so many reasons to tell me that it will be a good evening, but I’m still having a hard time with it, to the confusion and consternation of my husband, who is trying — but not succeeding — to understand my difficulty with the whole thing. I “just” need to be hyper-alert to keep my attitude and racing heart in check, and be humble and accept my deficiencies. That’s hard. 😦
- It stormed hard last night. Wonderful. I love dark nights full of lightning and pounding thunder and driving rain and the overcast, drippy days that follow.
- Fiala has started delightedly greeting every moving creature in the world by grinning, waving her left hand — palm inwards — and saying, “Hah-ah! Hah-ah!” which, translated, means, “Hi!” Not only is this just precious, it’s a relief. Having a child with autism/autistic tendencies, I have bated breath until my baby makes a connection with those around her. Not that being extroverted the the goal, but it makes my heart glad to see her establishing eye contact and greeting everyone. Plus, she’s just so darn cute.
- I did hear back from the allergist’s office yesterday. Fiala, through RAST testing, tested positive to only egg. (She was tested for milk, egg, almond, banana, and yeast.) However, I’m not putting her back on those other food items yet, except maybe yeast — I’d like to try my hand at a gluten-free, dairy-free, egg-free yeast bread. And, I’m keeping her off of all nightshades as well. She definitely has a reaction to potatoes and tomatoes. And soy. I will ask the new allergist, when we see him on August 12, to lead us in testing for delayed-response to all the foods which I’ve noted a reaction in Fiala. And, to look for other foods that we’ve not yet identified, because she’s only about 40% healed. In fact, a couple of days ago, I resorted to using Protopic on her face, as it was apparent that, with the information I currently have, her skin was not going to improve beyond that 40%, and she’s still in discomfort, clawing at her face, especially when she’s tired or upset. I definitely don’t want her to be in pain, but I don’t want her so medicated that we can’t find the source(s) of her allergies! There’s gotta be a balance there.
- I did officially stop reading Wuthering Heights, and I am strangely relieved about the whole business. My friend Kathy gave me a copy of both Persuasion and Pride and Prejudice, and I think I’ll read P&P again. Next time we go to the library, though, I’m going to ask for an inter-library loan of one of Frances Burney’s three novels — Camilla, Evalina (isn’t that a beautiful name?), or Cecilia — am I missing any? Burney’s books were published in the late 1700’s, and were very influential on Jane Austen.
- Speaking of books, I have been debating whether or not to recommend a book I really, really liked. It’s called Truck: A Love Story by Michael Perry. It’s hilarious, insightful, and very interesting. In a somewhat self-serving way, I realized that one of the things I really appreciated about Perry’s style is that he tells chunks of his story, in a seemingly random fashion, then gradually ties them together. However… this book does have five or six expletives, and though Perry was raised in a very fundamental Christian environment, he’s not living in it now. In fact, towards the conclusion of the book, he spends several pages arguing for gay marriage — of which I am not a supporter. However, that’s not the point of the book. The point of it is how he restores an old truck and meets his wife. I am GREATLY looking forward to his latest, Coop: A Year of Poultry, Pigs, and Parenting, in which he and his wife have an unassisted homebirth (however, Perry is a nurse, so I don’t know if that could really be called “unassisted”!!). It’s too new for interlibrary loan, so my library agreed to order its own copy!
- I have almost all my books and supplies for the upcoming schoolyear! Since I didn’t need to order a new Sonlight Core, I was able to get everything I needed — mostly new math, English, and science curriculum — for all three boys for under $300. I saved $101.50 by buying things second-hand, and by buying older editions. As I was making purchases yesterday, I thought, “Hmmm… Maybe I should order some stuff for Audrey, too.” She only turned 3 in April, but is slowly and happily making her way through Teach Your Child to Read in 100 Easy Lessons, and if nothing else, she just likes to participate in school. I didn’t get anything for her, but whaddya know? Late in the afternoon, my angel of a Stepdad called and said, “Hey, I’m at Costco, and there are all sorts of preschool books and workbooks. Some of these look great! If I buy some for Audrey, will you use them with her?” Um, yes. Yes, I will. Thank you very much, Joe and Jesus, for knowing not only my needs, but my wants, too!
- I think I may have posted about this before, but Home Science Tools is THE BEST science curriculum and supply company for homeschoolers. They have great prices, reasonable shipping, and a huge selection. Yesterday, I purchased a kit for all the experiments done in Apologia General Science (which Ethan and likely Grant will be doing) for $23.95, plus shipping. Additionally Home Science Tools has THE BEST e-mail newsletter. Seriously. They are infrequent (which I like), and chock-full of actually useful information, like projects, experiments, pdfs, external links, and more. You could seriously form an entire curriculum around those e-newsletters. Of course, there are links to purchase items mentioned in the newsletter, but they also never fail to suggest alternatives so that you’d be able to complete the experiments at home without purchasing new equipment. I couldn’t find a link to the most current issue, sent this morning, but here’s a link where you can sign up. They have two newsletters — one for K-4 and one for grades 5-9. Also, be sure to click on the Science Project Archive. There are literally dozens of projects in 10 different categories.
- Lastly, my husband bought a harmonica for Wesley for Christmas. It was a “Pocket Pal” and Wesley took that seriously, taking it almost everywhere he goes. He’s got some serious harmonica chops going — he can bend notes like nobody’s business! However, because I don’t always inspect pockets thoroughly, it’s been through the wash several times. The last time, the dunking ruined three of the draw reeds, which had Wesley in tears. I pride myself on NOT being an impulse buyer, but on eBay, I saw a “C” harmonica (which Wesley’s is), with free shipping, for $5.99. I clicked on it, and not only was it free shipping, it was further discounted, and was only $4.00 — that’s it. Four bucks. Wesley will be thrilled.
…if you or any of your children have food allergy or intolerance problems, PLEASE make this recipe: Allergen-Free Breakfast Cookies.
Sometimes, it really seems like God is watching out for my future, as well as my present. When I started homeschooling, I had no idea that I would eventually have a kid with a learning disability who thrives in a homeschooled setting, but who would likely be pressured by school staff to be medicated, if I had him in a regular school. I had no idea that I would have a different son with serious food intolerances, an immune disorder, and a life-threatening allergy to peanuts. Again, all easily treatable at home, but it would be a rats’ nest if I was trying to navigate him safely through the public school system. I am part of local Yahoo groups for both allergies and celiac disease, and this is the time of year where conversations are FLYING with talk of difficulty with school administrations and policies, tips from parent to parent, heartbreak, commiseration… I say a little prayer of thanks as I delete those messages, that they are not relevant to our situation.
More than a year ago, I developed the above recipe simply based on the fact that my cupboards were bare of our usual breakfast foods. But, now that my baby needs me to be:
- gluten-free (well, I have to be gluten-free, so she is by default)
and… it’s now looking like she has problems with POTATOES*, of all the hypo-allergenic foods, I’m really scraping the bottom of the barrel for breakfast foods that have at least a modicum of healthfulness.
Enter my “accidental” recipe from last year. Seriously, it’s one of the most unique-but-successful recipes I’ve developed. They are so good, yet also so healthy, AND free of all of the allergens that bother my baby Fiala. What a “coincidence,” eh?
Yesterday afternoon, we were in desperate need of groceries… Well, not really desperate; we have food in the house. But, we had a dearth of items that I could eat. Beset by hunger pangs, I snacked on half a can of Bush’s baked beans!! Ack. So, making those cookies this morning, enjoying their hearty tastiness, knowing they were altogether safe for Fiala (I think!), wrapping some up to freeze….. It just felt great, all around.
Only tangentially related: I love fresh fruit, but by the 4th or 5th day after going to the grocery store, the fresh stuff is gone, and I’m combing the cupboards for something dried or canned. So, during my late-night shopping trip, I got prunes (and raisins and cranberries). Wrinkle your nose if you may, but I like ’em, and so do my kids. I filled a bag with pound and a half of gooey, healthy, sweetness (on sale!). After putting the groceries away, I sat down with my current book and five prunes. I left the bag — bad Mom! — on the coffee table when I went to bed. It was found by our dog, who, apparently, adores prunes. She chewed the bag open, and consumed all the contents, as evidenced by the bits of sticky plastic spread around our family room this morning. My 12yo, whose job it is to daily collect the dog waste, is not pleased. I’m just mad that the prunes are gone. 😡
*Not sure about potatoes, yet. But, her skin was greatly improving from the antibiotics she’s been on since Friday, and from eliminating eggs, banana, almonds, and yeast. Then, on Monday I gave her a few chunks of red potato — she LOVED them, but woke up yesterday with red, crusty, peely cheeks again. I wasn’t sure if it was potato that was the problem, and I went ahead and gave her potato again last night. Her cheeks are worse this morning! So, potato is out. I’m going to do my own little patch test later this morning, when she awakes from a nap. In the meantime, this is a really interesting page on potato (and other) allergens.