Rudolph The Red-Nosed Reindeer

Don’t we all (well, maybe only some of us) just LOVE to watch those fun, old Christmas specials in December on TV? How the Grinch Stole Christmas (spoiler alert: Christ was still born in Bethlehem! Christ is the reason for Christmas in the first place, NOT all the “things, things things!” ) and Frosty the Snowman ( which doesn’t hold a melted candle to Raymond Brigg’s THE SNOWMAN) are just a few that I think of right away. Doesn’t seem to matter how olde I get.. I am still there with a steaming mug of hot decaf, feet crossed and up on the who-cares coffee table, wrapped in a blanket, waiting to hear the story I have heard over and over again. Then we have our favorite parts to those specials, don’t we? To watch the Grinch lying, for instance, to little Cindy moments before he has “krupt” to the chimney to stuff the tree up (how COULD he??!) and the emotion of the child over the puddle that once was the magical Frosty. There is also (and if you have NEVER seen The Snowman, created in the early 80’s with award -winning, hauntingly beautiful music, you are truly missing out) a similar scene where Raymond Brigg’s snowman is suddenly no-more and there is deep sadness (conveyed only by the melted snow and the young boy silently hunched over it). We love to watch and maybe too to shed a tear again as if we are 5 or 6, watching these programs anew. I love the creativity in the stories…how they all come together…but then there is Rudolph. As one gets older and lives with a child with disability even the Christmas specials start to look different…at least that’s how I felt as I watched this classic this year. Donner’s wife was newly delivered , and we learn that he and his wife have given him the beautiful name of Rudolph. Everything is great until we quickly find out that this beautiful creature she bore doesn’t look like all the other reindeer(this is very true to human life sometimes too!) His dad quickly tries to hide the “abnormality” of the red nose. He even stoops to use dirt to cover it up in an effort to make his son fit in with all the other reindeers. A quick fix. Can you imagine? Good thing this dirt didn’t make Rudolph sick, breathing it in through his wonderful nose. Good thing Donner was unsuccessful. Next, Santa arrives on the scene to see the little Buck. Jolly old Saint Nick shows up but his first remarks are negative ! No “HO HO HO!” but more like an unspoken “Oh, no!” There might even be consequences because of the red nose. WHAT IS THERE PROBLEM? Then we have the other reindeer deliberately leaving Rudolph out of their games. WHAT WERE THEY THINKING and HOW did they learn to be exclusive?..hmmm could their attitudes have stemmed from those of their rigid parents? Probably. But we SENSITIVE parents and caretakers of those who TRULY look and behave differently, are left only to imagine. If this isn’t enough, we learn in the story about the misfit toys..the ones that aren’t quite right. The misfits are stricken from living where all the typical toys live…those that the girls and boys are SURE to want, and instead are segregated. who would want them? I wonder who decided to put them there ? Yes, these toys have a marvelous, tenderhearted lion to watch over them in their separate living space (likely meant to be a higher being) but it takes Rudolph’s coming to the island (that would otherwise have been neglected), however, with the light of his God-given nose and the Holy Spirit nudging Santa to use Rudolph’s disability-turned-gift instead of judging him by it!

At first glance, in real life, WE don’t see straight. We, like this Santa, see the difference or differences standing out with the same Santa- negativity illustrated here. Left to our own small mindedness and devices, we too would be saying “oh, no”. We instead have to pray for God to stretch us and to remove the scales from our eyes so that we can see the delight of the “shiny nose” that is built into our children…our different but God-given children. Maybe we still don’t SEE the gift yet even after we have been praying and praying. Despite this, we must remember that God’s timing is perfect and He will reveal all to us in that.

John 7:24 says do not judge by appearances but judge with right judgement

We have to teach others, perhaps by example, to do this

Happy Thanksgiving Just About

I am finally realizing that it is becoming impossibly difficult to find quiet time to dedicate to writing on this blog. I am more than certain that by my excessively long absence, I have lost any audience I may have initially found; I cannot be bothered by this realization! I simply must, ” carry on,” as my British mom might have said. And so I shall! Absence makes the heart grow fonder? Hmm..I’m really not sure 🙂

Timothy has been managing reasonably well as of late with his pandemic-related, near- total- lack of socialization opportunities.- I am still seeing some of his negative behaviors I have previously written about; I am coping better with them on some days than on others (truth be told).

Timothy crossed a wonderful, positive, behavioral bridge last night, allowing his dear dad to “tuck him in” instead of his weary olde mom! It happened out of my extreme exhaustion which was quite the bonus: I told him matter-of-factly: ” mom is going to bed, and dad is going to tuck you in”. I waited for an anticipated whine or negative reaction but came up in the clear, praise God! Silence certainly is golden when one can’t stand up anymore and bed is calling! My son only “insisted” that I do hugs and say prayers; I was able to step up and do those in the the moment which passed as satisfactory (no complaint was perceived). Continuing over the positive behavioral bridge topic, Timothy spotted folded laundry outside his bedroom door and spontaneously brought it into his room and began putting it away without a word from me! He SAW it and ACTED on it without cues!! Could have knocked me over with a feather; I was very pleased! On the other hand, he decided too to take the initiative with getting his clean underwear (typically washed and hung up to dry) from the laundry room and put it away. Great idea! I didn’t know he had done this until shower time, however, when I went to get out a clean pair of his Jockey’s(why didn’t I let him get them out and make the “discovery”?) and connected suddenly with “good wetness” (I am sure you can imagine what “bad wetness” is if you stop for a second). Teachable moment straight ahead: “Timothy, oops! Did you put away your underwear, Sweet Pea?” (I hear the positive reply from behind the bathroom door). I will have to review this “fun ” concept with him later: leave your wet underwear hanging up until it’s dry! Sure loved him taking that initiative though! It’s great to see his initiative because it translates into higher thinking and to focusing, and taking responsibility when there had been none. There is still such a long way to go and I am, as his mom, only one tiny piece of his life-puzzle. He has God to guide and direct him and to protect him, and I have my faith which forces me (otherwise a type A and hanger-oner) to let go! Timothy’s future is in His hands. Remember the song “He’s got the whole world in His hands”? I think that’s what it was called..well..I need to actively remember that by consistently and appropriately letting go.

Tomorrow we’re having a turkey and a few good things to go with it (Timothy is sort of expecting this, so we are doing “it”). I am very thankful to God for ALL of His great provision, blessings, and agape love. I wish anyone reading this a very happy Thanksgiving tomorrow!

To Key or not to Key

When Timothy’s feelings of being out of control rise up (most nights now it seems), he reacts to my locking of the playroom door (which leads down a flight of yellow polka dotted stairs to the office, the laundry room as well as the playroom) by slamming and locking the BATHROOM doors. I MUST lock for safety (obviously) but he locks out of frustration; he’s not capable of stringing words together to yell, ” Stop locking the doors, mom! It’s driving up my autistic tendencies!” Not that that would make any difference though. Not in this situation. This “situation” has become ritualistic and it’s me that wants to yell “STOP! I am going up to BED!”

Today Timothy came home from school, as expected, wearing a new lanyard (speaking of words, that’s a funny one! Never heard that growing up!). He had been waiting all weekend to get it from a favorite teacher. His primary teacher (whom we are so INCREDIBLY blessed to have) spoke to me in an email today about the idea of a house key on the lanyard. A HOUSE KEY??? Doesn’t she realize he wants dangerous independence? If wish were granted, he might try getting up in the night and going out while I was fast asleep and his dad (deaf in one ear) was snoring away on his good side! Too dangerous a risk . Sad too. He is 18 and SHOULD have house key (and under other circumstances would). Well, I thought about it when he came home “asking” for a house key. Instead of saying “no” (always a mistake with the presence of autism front and center), I sent him out after homework along with his caretaker to get a “fun” key from the hardware store alternatively. That would look nice on the lanyard and carry a bit of realistic,( and probably distracting )weight. He had no idea what a ‘fun” key was. It sounded a lovely idea though until he crossed the threshold back again, quickly realizing (by trial and error throughout the house) that the “fun” key was really not going to get him into anywhere! Yes, I am most definitely responsible (in the name of safety) for some of his out-of -control “madness”.

When left to his own devices, Timothy turns on our very technical dishwasher for no apparent reason and has figured out..all on his own… how to print pictures of musicians that he likes by AIR PRINTING FROM HIS IPAD TO OUR PRINTER ( which is behind the locked office door)!

He sat on the floor disappointed this evening when he realized that he could not open the living room door with his “fun” key. He sat looking at the much- coveted digital piano beyond the glass-paneled door just there. I let him in of course but that is not the point.

I am thinking of an LP that I had as a child. ALICE IN WONDERLAND. She wants to go through a tiny door. She drinks something that could be anything (someone wasn’t too concerned about HER safety) and says,” if it (the drink) makes me taller I can reach the key(on the table) and if it makes me smaller I can fit under the door…and either way, I get to the other side!” She gets taller. The narrator goes on to say,” she picked up the little key in her hand, but when she bent down, she realized she would never get through. Why even one of her eyes was bigger than the whole door…” I was reminded of that as I saw Timothy expectantly trying to open the glass-paned door to our living room. I decided then and there that he should have a key to the living room to get to what has become HIS piano (even though it was a wedding present to me from my husband!). I am planning on getting him a duplicate key (we practiced saying that word today) tomorrow so that his lanyard will hold a real key that he can happily use to open just one door without me opening a can of worms in the process.

I have to Apologize

I have been excruciatingly busy as of late, trying to to obtain my son’s guardianship, knowing that he was turning 18 on the 9/6. I found that I had to resend multiple forms to the court house (thank GOD for the ability to rapidly scan documents/copies of them through email, as too many important things sent to this unnamed legal establishment via certified mail were STILL mislaid). Eventually, I got to speak w/ an attorney who, on the day before my son’s scheduled ear surgery, implied that I might not get a hearing that day despite all my efforts. Just what this FRANTIC mother wanted to hear! Time was of the absolute essence as Timothy had JUST turned 18 and could not sign consent forms necessary for him to receive anesthesia in advance of the procedure! Should I cancel the surgery and the trip into Boston? I had practiced driving the route on Labor Day as I don’t normally drive Boston .

I had been working on completing/issuing all the necessary assessments (MD, Psych, Social Worker) within the correct time frame(or they would have to be done all over again. never mind COVID and court closures and all their backed up mail!). At the near last minute, Someone court gave me the great idea to apply for EMERGENCY guardianship because of the impending surgery. I quickly did this, writing a THIRD affidavit which this time mentioned the pressing necessity due to my son’s ear pain and loss of hearing (imagine starting school with both of those things front and center, when one is already limited by Down Syndrome and ASD!). I thing I formally begged the judge. How does one formally beg? Hmm..I am feeling a bit theatrical as I ponder that…but I digress. I sat on the couch (talk about potato!!) the entire day looking at email and waiting for a call as I simultaneously watched the clock thinking “they close at 4:30..they close at 4:30!”). I tried to relax but was completely unable. Suddenly I got an email from the attorney: “the judge can do a hearing at 3:15 or 3:30 with Timothy, myself AND my older son (away at college..hello..and already came home earlier in the day to sign necessary paperwork before one of those infamous scanning events). My older son needed to be there because I decided to go for co-guardianship! Oh, NO! I quickly called him (this is going to be a disaster and I will need to cancel the surgery and God knows when I will finish obtaining the guardianship!). I called him and thankfully he answered right away. could he Zoom from school with us and the judge? He had a very small window of time, and as God arranged it, that was at 3:15!! I quickly emailed the attorney back and told her and went into the judge’s virtual waiting room. Timothy was promised Mcdonald’s if he could just sit with me on the couch while the judge asked us questions. It took 5 minutes. This was gift from God. I would be lying if I wrote I did not get on my knees and pray about the whole thing in advance and that afterwards I didn’t yell at the top of my lungs: “THANK YOU JESUS!!!!!”. So the real ending to the story was this: the surgery (prayed over by many people at my church on our prayer chain) went without a hitch. Pain medications followed every few hours prophylactically and with great success. I am so thankful to God, especially today as Timothy had his first day of school! I truly wish I could post his picture but have no idea how to do that and no time to learn. His hearing is very much improved and I just wish I had taken care of this a few weeks before he turned 18 but……

My husband was hospitalized with congestive heart failure exacerbation. We were left us two (Timothy and I) to try and cope on our own. I spent time calling the nurses every morning, getting the latest reports which initially were bad with big problems. I tried to visit (the hospital was wonderful and let Timothy visit with me) but it was hard to be with someone who was so sick. I instantly realized upon crossing into his hospital room that visiting was not a good idea. It was very hard for Timothy to see his dad so sick (at one point when he saw a pair of socks in my husband’s hospital room, he ran and brought them over to him maybe thinking that that would somehow help him. he wanted to do something for him).

Sound like a broken record here, but the power of prayer is amazing!!! I had some very lonely moments at home and began to allow myself to imagine what would it be like if he died. I know he will die one day, but I prayed that God would bring Doug home…home to me. I prayed for healing to all the organs that were not doing well and that He would normalize other things as well. I tried to stay focused on those prayers when I found myself leaning in the direction of fear. Fear is a terrible thing sometimes…especially when there is no one there with skin on to tell you to not be afraid (Timothy does not know how to say comforting words, although he did give and does give some wonderful hugs: it may have been the Holy Spirit working through him to comfort me in those long days). Doug is back home now…working with visiting Nurses and PT. He had a pretty good day today. I am taking leave from work for a while, trying to get him into a pattern of doing good things for his weakened body but it is hard to be your husband’s wife and therapist. We are keeping many appointments and managing multiple medications but I think it’s worth it. It’s uphill each day but I think it’s worth the climb as we’ve been given our legs to do so.

Window Shades, Doors Ajar, Round and Round the Roundabout

I have to apologize for being very absent from my blog(and really missing the therapeutic hold that it has on me). Excuse number one: my husband had a heart failure exacerbation and had to be rushed off to the ER with my son in tow. Thankfully, he was admitted and then transferred to another hospital where the right specialists could help him, and thankfully I could visit him WITH our son despite COVId restrictions; exceptions were made for us each time. Praising the Lord that my husband is back with us now and moving around without physical help, though quite weak. Hopefully, his physical therapy starts today here at home.

My son is turning 18 on the 6th, and I am trying to put together a small (maybe 3 people) bowling party for him with his brother and a new acquaintance. I am thinking we can be socially distant! Despite having regular childcare this summer, some joy has gone from his not- so -little- anymore soul. Here’s hoping the party will lift his spirits. Timothy is usually very happy but the pandemic and continued lack of being able to eat in restaurants or meet up with his Capernaum group (an off-shoot of Young Life, for those of you who are familiar) have perhaps caused an unwelcome flatness to his overall affect. Hard for a mother to look at. I am very much hoping that the little party will bring back some of the light in his beautiful eyes.

When Timothy’s helper is not with him, he is still fixated on opening doors in the house, staring at them briefly and then leaving each ajar. I used to go and close them but now I am leaving them, knowing full well that they will be opened again whenever he needs to feel in control in this manner. His mild fear of thunderstorms causes him to want his window shades back from me. I keep them in my closet(thankfully the door to which stays closed in my locked bedroom!). He seems intolerant of them being in place at each of his two bedroom windows when there is no threat of a storm (I try to avoid that word STORM as it can start a verbal perseveration). I think this is because of the precision needed (ever stopped and thought about how you learned to pull a shade back up? It’s so automatic for a typical person!) to be able to raise them up without asking for help. This morning I found them jumbled up in the hall, resting on his brand new prescription pair of eye glasses (mercifully unscathed). He must have decided the storm had passed over and taken them down. I rolled them up and put them away until the next storm, at which time he will come and ask for them again (and we can have a teachable moment of using the correct pronouns). In the evenings, after he has had dinner, a shower, and time with Kiss 108 or on his iPad playing Angry Birds, He invariably comes to ask me for a car ride. If I am not too tired from the day’s many chores and now care of my husband, I will acquiesce, and off we go up 128 towards Gloucester. Soon after we cross over the river, with prompting from me, he communicates his preference to make two trips around the round-about (or as some folks call it: the rotary). I regularly wonder whether the policeman (yes, I still use that word and others like it) who is parked facing the round-about takes notice that we frequent here and generally take an extra go-round? I have pondered what I might say if I got pulled over by him. He would instantly know I wasn’t drunk because I always use my turn signal as I exit the round-about. He would look in the car and see Timothy and with almost no explanation give us the okay to go around twice. I am pretty sure.

Hybrid school & Absence of Friends

The summer is dragging on (the humidity makes it worse for Timothy and all of us!). There are many times in the course of the day where Timothy does not know what to do, so he has taken to repeatedly pulling the shower curtain closed, opening/closing windows and looking intently at doors that he has just made ajar. The iPad captures his attention for limited amounts of time. He is bored and the autistic things seem to bloom in these moments. The whining meter is on medium high these days ( so I push down its effects on me with a light beer). He is desperate for friends and fun (two things that simply don’t grow on trees). He is going into the classroom 2 days a week now for only 3 hours a day each of those days and then is still being home-schooled by me or by his dad (if his dad feels well enough to do it) . He talks incessantly about school and “going on Monday or Wednesday”. It is clear that he would like to be there all day 5 days a week. More frustration for sure.

I managed to lasso a church friend into “playing” soccer with him for an hour at a park. It was great! He was loving it. I made a couple short recordings so that he could look back and remember who Miss Sarah is (she leaves the country soon to basically start a new life). It is pretty much up to me to figure out his day yet some of the things I plan just end up going off-kilter (like the idea of following a recipe… a new idea for him, making popcorn and watching( the cartoon of )Beauty and the Beast for the first time. He LOVES musicals(on the stage, not the TV) and the air conditioned room would have been perfect! But what do I know? He sort of “replied” that he wanted to watch a movie about The United Kingdom! -Clearly something he was watching on his IPad brought him to that idea. I told him we would look for something (time to dump on dad!) about it and “reminded” him that his English granny came from there. Upon hearing this, he ran to the family room to kiss her picture (probably taken about 6-8 months before she passed away this past January). He is in the picture too. He told me, “Granny loves Timothy,” and I affirm this SEVERAL times today with each of his declarations . I “remind” him that she is in Heaven now with Jesus and that we will see her there one day. He stops paying attention after I say that she is in Heaven. That’s what he usually does. I don’t focus on the fact that I can’t get through to him though because I know that it’s not that important, and that God will make everything clear to Timothy in His perfect timing!

Tomorrow I have to pray first thing when I get up in the morning, as I am heading to the court to turn in all the necessary paperwork for Timothy’s guardianship process. He turns 18 in a few months and because of his diagnoses and intellectual impairment, he cannot make big decisions for himself and won’t ever be able to this on this side of Heaven. in the eyes of the court when you turn 18 you are considered and adult but Timothy does not fit the bill. I am planning to be his guardian so that I can continue to make those big decisions for him legally. This is just the beginning..I have to issue citations to everyone concerned (and yet they already know I am doing this! It’s a technicality) and then try to get a court date before he turns 18. I was recently told that I will have to do some “emergency filing” in the near future because of ALL of the court dates that have been pushed back due to the detrimentally impactful Corona Closing. They just recently reopened, thank God! If you are reading this please pray for a smooth process tomorrow and that I find parking(which is a REALLY big deal!) . Thank you!

Pandemic Lemonade Stand

How do you tell your kid, lemonade stand first-timer, that he can’t have a lemonade stand because of the pandemic.? Hmm..How about a bit of careful thought for a start! I’ve been thinking about it as a therapist. There is definitely a way to do it, starting out with the usual things: going out to the store to buy the lemons , the sugar..trying to avoid getting the juice in your kid’s eyes while you’re squeezing out the lemons (‘could you PLEASE stand back while I’m doing this part!”), being sure to get the seeds know, all of that STUFF, right? You get your big pitcher out and do the teachable moment of “it’s a PITCHER, not a picture.” Set your (hopefully not too wonky) little table outside with your not-too-tall paper cups (more servings more jingle in the bank). But how to maintain the lemonade stand with THE PANDEMIC ? Well, to begin with, the customer who drives up in their car needs to see the smiling face of of your child (pretty standard thing: happy faces sell the lemonade!) but now with social distancing ..I”ve considered putting my child in an adaptive mask made from a Glad sandwich bag (kidding) which might be handy…so that germs or no germs, a smiling face can STILL be seen..hooking it around the ears with rubber bands in the usual method. Cumbersome but cute(?). It might work for a short time. Hey, the driver might even feel SORRY for the kid and buy up all the lemonade just to get him out of the sandwich bag!

Hiding the hand sanitizer under the little table used to be essential to avoid a potential drive- by snatch (remember when we couldn’t GET hand sanitizer at the stores?) Now it seems like everyone is making it! Maybe we should put that in a large picture..I mean pitcher instead, without the straws though. The other pandemic essential is to have a suction cup reacher (long). If you are not familiar, this is a tool that Occupational Therapists often use with their patients or clients for adaptive dressing or for retrieval tasks when bending is difficult or impossible. In this instance, since Elasta Girl is fictional and cannot help us out, the reacher can be used like a long arm, delivering the satiating lemonade into the hand before the driver even has time to sneeze in the kid’s direction. So now the tike can approach cars (socially distanced) AFTER the driver, of course, pitches the cost of the cup into a wide brimmed basket , perfectly parked in the grass near the table. Instant adaptive success! The kid might make up a game out of the new technique as closing time approaches (if there were too many cups of lemonade leftover) and post a sign that says: get your money in the basket first time, get a second cup free! Now that’s a pandemic lemonade stand. Not too sour I think!

” Write it Together?”

Today was another hard day (we have been having a string of them). Timothy suddenly remembered out-loud that he had been “playing ” tennis. I confirmed this while I folded towels, figured out dinner, and made a shopping list (forgot the bananas in my distraction, darn it). Of course I thought he was referencing last Friday’s “game” with a new (adult) friend Skylar. He doesn’t really play the game but he enjoys TRYING to play, as I sit and cheer him on (in a voice that is probably too loud). I was thinking HE meant this past Friday at the park.. but nope; He was referencing Special Olympic tennis from last year (everything S.O. THIS year has been done through Zoom.. and although grateful for that technology, it’s JUST not the same as being there when you are living for the day when everything in-person resumes! When’s that happening again?? ANYBODY?).

When Timothy did S.O. tennis last year, there was a whole group of folks like my son, so it was nice from a social perspective for sure. He had a couple teachers(I think they may be volunteers) who were great! At pick-up time, when I came to scoop him up, he was still very engaged with them doing some kind of round-robin thing and trying to get the hang of it on one side of the net. I REALLY miss these activities for him! The absence of them often seems punishing, and thus the hard days. Factor in the humidity and you’ve got a perfect formula for breakdown. I am digressing!

After my son began referring (throughout most of the day) to S.O. tennis, he kept bringing up the name of Victoria. (I mentioned in another blog post about how I have to make up names for him to hold on to, just to get the chicken in my skillet turned over..well here we go again but with a little difference). Could mom call her? Could mom text her? Of course explaining that I don’t know her and that her phone number is not in my phone has a net zero impact. I made up a last name again when he needed to know that (went w/ Parrkhinsun). Next, he spoke sweetly to me with a hand on my shoulder quite unexpectedly and asked about writing a letter to Victoria! I thought: learning opportunity! I ran off and got a bit of stationery with a matching envelope (it happened to be handy, and since I make my own cards* a lot of the time I didn’t mind using it). He said in that gentle voice of his (always gets me when he does that ): “write it together?” His voice even went up at the question mark as a typical person’s might. Let’s do this! He took the pencil I handed to him and wrote on his own (hinting at help w/ a few things): “Dear Victoria, How are you doing? I am good. from Timothy”. He practiced stuffing the envelope (it fell apart in the process..quick Scotch Tape fix at the ready, followed by a small visual demo of how to open the envelope in prep to stuff) and then writing her name and address (dictated by me, of course, although I have no actual knowledge of where Hairbrush Road is located in Volume, Ma).

Tomorrow he gets to go (for three blessed hours!!!) to a bricks and mortar school for part of his summer program! He cannot take a bus and once at school must conform to all the things we have been doing already with masks and social distancing, etc. He is excited because I have promised to take him to see a particular CVS store associate (he can say ” store associate” now) after school. Her name (no lie) is Victoria! She does not play tennis though (I don’t think!). Maybe I should ask her just in case.

*I am a very “un-techy” person and would love to put some of my cards up on my blog (to help decorate it and hopefully inspire others). It’s a goal. I have yet to learn how to do this. Hoping someone at WordPress can actually talk to me on the phone and walk me through it! Here’s hoping!

Never Mind The WHEELS On The Bus🎶

A few days ago, I experienced great sadness with my son as he picked up a toy school bus, came over to me with it, and held it up so that he could peer in. He began looking about as if searching the aisles for someone, and then he spoke: “no one is going to school because of the virus. School is closed because of the virus.” He HAD to tell me. He understands that SO MUCH is missing in his dear little life…BECAUSE OF THE VIRUS. He looked into the bus two more times and repeated his story; my heart ripped a little more with each glance: sadness with strings attached. My hands, like those of so many mothers, are tied. One cannot offer comfort with words that ring hollow (eg “ Oh, it will go away soon! or “ You’ll be taking the bus in September!”). Nope. I had no choice but to let his words affect me like isopropyl alcohol on a gaping wound…awful! I was, however, able to get it together and acknowledge his accuracy.

I can’t IMAGINE what I would have been feeling as a young adult in his shoes. I think I would have shed many tears. He, however, has not shed ANY , and I am amazed!

Timothy has been listening to bits of classical piano music on his Ipad and bringing me pictures of people at their pianos, wanting me to tell him their names. Pretend friends? I haven’t the slightest inclination who they are, yet he persists and persists ( will I burn the dinner or make up a name? hmmm…how about Sara Mushroom for this one and Cinddee Bayckon for the other?). He tries out the names on his palette, and thankfully the flavor seems to agree with him. Off he goes, while I turn my attention back to the Bell and Evan’s in the frying pan and flip the chicken just in time .(THAT time) Later, Timothy tries his hand at playing a hint of Bohemian Rhapsody. Finally, he finds joy ( praise God that he is smiling!!) in Zooming with Hannah and joining in singing THE STORM IS PASSING OVER 🎶 with her while I get to sneak a listen.

Let’s pray that this Coronavirus is passing over too , and that we WILL see the people on the ( school) bus before too long.

Of Clocks and Box Fans and Fiddle Dee Dee

One of the things about raising a child like my son, who carries a dual diagnosis of Down Syndrome and Autistic Spectrum Disorder, is that he can become rathe fixated in the heat of the day, if boredom (God forbid!) starts to set in. Prior to Covid, he became interested in getting a clock for his room. He wanted to go to CVS (it used to be for buying their cute little cars that are on display in some of the CVS stores). I thought: “Okay … a clock … a good thing … he wants to know what time it is and what time it says when it’s nearly time for bed, etc. Yes! Let’s buy a clock for him , by George! ” So I laid down the dough, and he seemed pleased to have it. Not long after, however, he caught me when I was beyond exhausted and wanted “another clock.” Clearly not going to bed (holding me hostage) until I said yes (bear in mind my son is nearly 18). Okay … two by two … compare the times I thought … accuracy … whatever… I can promise him that if ONLY he will: “GO TO BED, for PETE’S SAKE!” He went to bed. (Remember the story of Rumplestiltskin? Turn all this to gold or I will take your life? Well, as the story went on, the king wanted more and more gold and eventually promised to make the girl who was spinning the straw into gold, his wife… but What was I getting??). You guessed it: unfortunately, my son wanted a THIRD clock, and he decided to take ours (somehow we forgot to lock our bedroom door that evening!). He waited until we were not around and blammo … he got it! No sense trying to reason with someone who cannot reason! No way to get it back. We are left accepting some things at times. Well, we can use our cell phones in the bedroom to tell the time, right? THIS was just one one those things, dag nab it! He plugged them all in around his room and broke one of the outlet covers intentionally (so we had to replace that) then the boredom DID creep in! Next thing you know, his childcare provider brings me the broken clocks (2/3 ain’t bad, right?). He had de-wired them all with some expectation that we would just buy more. At least one is intact, the one with a radio (I had no idea he liked KISS 108 after bedtime!). Enter next the story of the Box fans. Essential because he will not tolerate air conditioners! We are on the second one of those as the first one became a toy to bang off of the table and ultimately smash. Lovely. No choice but to get another one. Where is the lesson in this?? So far we are only on the second one but today he insisted on changing the second one with the one in our bedroom. Sneaked in again! He nearly knocked my weakened husband over trying to get to it while he (my husband) tried to “explain” that he (my son) could not have it. The negative NEVER works with my son. I barged thru the door, “Timothy is going to earn tickets if he takes mom’s fan!” (receiving tickets are this ” bad” thing that he didn’t like, starting back to when his brilliant teacher began giving them to him along w/ negative attention [i.e., when the child does not get any attention from the teacher or the parent when he is being naughty … a word that he understands on some level]). He stopped trying to take the fan! Thank God! I knew he wanted it because he was hot and probably thought that 2 fans are better than one. Two clocks … two fans … hmm a pattern I fear? He also believes that keeping the windows closed is somehow beneficial (I am constantly opening them for him and refreshing his ice water in protest), and he seems to think that taking off the window shades is a good thing…don’t get me started with that one! We are down to one box fan and one clock in his room, and I am wondering what the next thing will be. Oh, wait! It’s ALEXA, the thing that you give voice commands to! Apparently, the childcare provider has it in her house (KRIKIE!!!!!! ), and he thinks if he can just get into the office in our house (oh no!!) that he will find her there! Does anyone remember Habitrail, a special fancy gerbil cage? I feel as if we are in the Habitrail with Covid, just running around and around. I am trying to prevent my son from nibbling through everything so that there will be something left for next week.