Merry Christmas and Tummy Troubles

Merry Christmas! Today my husband and I had some folks from his side of the family over for holiday cheer. We did something new food-wise this year that tickled me to pieces, as I am NOT a cook: we ordered Indian carry-out. It was delicious, and completely fuss-free. I hope this becomes a tradition. What could be more Christmasy than curry?

Ian spent the day at his apartment with his roommate, and opened all the gifts he didn't open at our house on Christmas Eve. His caregiver took some pictures, and here is one of them:

He also got a slinky for Christmas, and here is the result of Ian's "playing" with it:

I literally laughed out loud when I saw the result of Ian's idea of how one should interact with a slinky. This is just so Ian. Why play with something the way it is intended to be played with, when you can come up with something more creative? Bless his heart.

Unfortunately, as I walked in the door today to visit Ian, I came upon Kandace finishing up the last cleaning-up touches after his roommate had just dislodged the contents of his stomach all over the carpet, himself, some toys, and his shoes. Poor Ron was kind of limply sitting on the floor looking the worse for wear, and occasionally making ominous coughing noises  (Kandace told me he was making these same noises right before he threw up the last time!)  Several ominous coughs later, up came more "dinner." As Kandace rushed to try to turn Ron on his side so he wouldn't throw up on himself again, she tripped over him and landed hard on her knee and back. The scenario: poor Ron orking, Kandace's daughter (who very fortunately was there as well), dealing with Ron, Kandace clutching her leg and saying "Ow, ow, ow!" I rushing to get towels, and Ian blithely sitting on the couch totally unfazed by all the chaos.

We finally got everyone sorted out with Ron going to bed, Kandace taking ibuprofen, and Ian just doing his Ian thing. I am crossing my fingers that this was just a short term food poisoning situation, and not the stomach flu. Argh! I seem to catch the stomach flu with startling ease; when I worked at a day care center, I had it five times in one year! So believe me, I washed my hands compulsively when I got home. I also went home with some...er....aromatic laundry to wash. Yuck. Poor Ron! It's very hard on special needs folk to be sick, especially when they are non-verbal. They can't tell you where it hurts, and it's hard to get them to comprehend what is happening to them, why they feel so awful, and why you are doing certain things to them.

As I said to Kandace---Never a dull moment! I hope you all had a very merry Christmas, and that neither you nor your loved ones vomited.  God bless us everyone! Oh, and here is a picture of Ron today before things took a bad turn tummy-wise.

Christmas Eve Thoughts

It is midnight, and so it is officially Christmas Eve Day. My childhood memories of Christmas Eve are very dear and special. In my family, this was the day we had a special dinner for just the four of us (My Mom, Dad, Sister, and me), and then we each opened one gift. There is a kind of rosy, golden glow around the memory of this time; it all seemed so cozy and peaceful. My father read the entire book A Christmas Carol throughout the Christmas season when we were little, and the last chapter was saved for Christmas Eve. My sister and I would sit on either side of my dad, and laugh and listen as he performed all the different voices for the book's characters. He did a really rockin'. gravely"scroogy" voice for Ebenezer Scrooge. When we were older, we took turns reading, and my dad always made us feel quite proud of our steadily improving reading ability. All in all, wonderful memories.



I had every intention of keeping these traditions alive when I had my own children, but after Ian was diagnosed, all my interest and motivation for doing this withered away. I could have done it for my daughter, but the distraction of chasing and monitoring Ian would have made this almost impossible. Looking back, I know I went through a very prolonged depression, and I felt (erroneously) that "this is not a REAL or complete family" after my son's diagnosis. I felt cheated. I did not feel this on a conscious level, but I know now that I carried this belief deep in my heart for a long, long time. Of course, in reality, we had just as "real" a family as anyone else, but I just could not accept that our family was "different." My lack of acceptance and trust in God significantly delayed my ability to feel joy with the family I was given. The chronic exhaustion from sleep-deprivation probably delayed it also.

There were lots of moments of joy, particularly with my daughter's "normal" milestones and reactions, but there was so much resistance to experiencing the moments of joy and blessing that came with having a "different" child. It is mentally draining to continually resist what "is", and wish for things to be different. One of my biggest regrets is that I didn't fully trust the Lord, abandon the template of what I thought a family "should" look like, and embrace the joy and happiness He so wanted to give me with the situation and family I had. I kept on and on wanting it all to go away have NORMAL.  I didn't consciously feel that at the time; I thought I was accepting the situation just fine, but looking back I can see how much I "faked it", and didn't really, truly embrace it. I am committed to doing that now. I have abandoned my life to Jesus, and He can do with me just what he wishes, and I think He wishes for me to seek the joy that is so alive and present in the family that I have. My Ian with all his quirks, his sensitivities, his unique experience of life---all this is a GIFT to me, if I just accept it as such.

So here is what is happening today: I will pick up Ian from his group home, and bring him to our house for a few hours of spoiling and loving, and watching his reactions as he opens his gifts. He usually enjoys the process of opening gifts more than the gift itself, and today I will love that. I will love his running around and doing all the things he likes to do at our house---listening to music on the computer, watching  videos, jumping on our bed, and simply allow events to unfold naturally. My daughter will be here with my granddaughter, so it should be lively. We are having breakfast for dinner: pancakes, scrambled eggs, scrambled tofu (we are vegetarians), hashbrowns, and fruit salad. We will be a FAMILY---perhaps not a picture postcard family, but the unique and love-filled family that God has given us. And I will be grateful. Happy Birthday Jesus; thank you for being patient with me, and thank you for helping me learn the lessons I need to learn, no matter how long it takes.

Here is a picture of Ian playing with a toy he opened last Christmas:

The Learning Curve, and how Awful I am!

Oy Vey. Heavy Sigh. This post is not really going to be about Ian in a straightforward way, but kind of tangentially about him. Mostly this post is about exploring my number one phobia, which is learning about new technology. I'm sure for most people, it's laughable that I get so very upset about learning how to use computers and cell phones, but I do. I morph into this incredibly unpleasant, demanding, whining, tantrum-throwing, exasperating two-year old brat whenever I'm confronted by learning something new technology-wise.

One of the things I would like to do with this blog, is to insert videos occasionally into the text. That sounds relatively simple, doesn't it? The thought of learning this skill, however, sends me into a tailspin. If the learning part doesn't come easily, or if it takes a bit of time, I can't seem to find even a shred of patience. And who do I take all this out on? My long-suffering husband. I behave toward him in ways I would never even dream of behaving toward a stranger. I bark, I sulk, I pout, I get sarcastic, I get angry, I flounce away....essentially, I am icky. I always apologize after my outbursts, but WHY am I like this? I'm tired of being such an a**hole to my husband, who, by the way, never gets angry in return. What makes it a million times worse at this time, is that he is suffering with debilitating physical problems that make it very hard for him to work on computers. His eyes are constantly shutting due to muscle spasms, and when he tries to talk to explain things to me, he has to work very hard to speak clearly due to the same spasms. So here was the scenario tonight: John settled in to watch one of his favorite holiday movies "It's a Wonderful Life", which I sat down with him to watch also. Then I started thinking about the whole video thing (I took some short videos of Ian at his apartment this evening), and wanted to upload them to my blog. So I sneaked off to try and learn it myself. Of course I got immediately bogged down, so I kept interrupting John to come and help me. And then I got impatient with his help, and started the barking, sulking, pouting, etc. Did John complain? He did not. He tried to go back to his video, and I probably interrupted him three or four more times. No complaints from hubby. I finally reluctantly gave up, watched the very end of the movie with him, and THEN started to feel the niggling of guilt. Always the guilt. So I apologized profusely, he forgave me, and all was well.

I SO much want to stop this cycle! No more fear of learning, no more impatience, no more bad behavior, and no more need to apologize. May I say Oy Vey again? May I? OY VEY! I'm pretty sure I know where this started; my mother gets very anxious and upset when she has to learn about anything technical, and my dad doesn't like it either. She flips out and yells, has a meltdown, and then always apologizes. Sound familiar? I have taken on this same characteristic. I am a TOTAL Ludite, and I take prisoners with my crappy attitude (well, I take John my prisoner.)

So---there will probably be videos on this blog eventually. My sincere prayer is that I will learn to learn without being a brat and making John miserable in the process. It's not worth it. My heart and soul want to be nothing but kind to the man who is so kind and patient with ME. Jesus wants that too, and I want to please Him. What else matters in life but to be kind to and love the people that mean the most to us? So, those who pray, pray for me. It's really a silly problem, but it IS a problem. I pray that I can move into the 21st Century with some dignity and class. Oy Vey.

Just a few more pictures of my sweet Ian. I want to learn how to insert videos as well, but I am woefully inept with all things technical, and I actually get a little anxious about learning such things. I have a new "smart" phone that has caused me to break out into a cold sweat as I attempt to learn how to use all the functions. I miss my old flip phone, but I am sort of grooving on the voice texting with the new phone. So fun and it takes much less time than all the multiple tapping you have to do to with the old flip phones. It will be hard to change this old gal from her Ludite ways, but I suppose I must allow myself to be dragged kicking and screaming into the 21st Century. I want to be a cool grandma, not a fuddy-duddy! Anyway, here are the pix--the first is at my daughter's wedding a few years ago. The lineup from left to right is me, my son-in-law Jamey, my daughter Kirsten, my son Ian with his jaunty hat and spiffy duds, and my husband John. The next picture is of our caregiver- angel-from-God-who-has-been-with-Ian-for-YEARS Kandace with Ian at a bowling adventure, and the last picture is of Ian's beautiful, but rare, smile. Isn't he handsome?

It's almost Christmas--may you all feel the love of God surround and uphold you. I send you all the love and joy of the season.

There is a new hole in Ian's closet. Why is this hole there? Because my son had a meltdown, started hitting himself in the head, screaming, and smashing the door to his room into his closet over and over. This episode happened out of the blue according to his caregiver. One moment he was fine, and the next he was yelling and banging himself in the head. Sometimes we know what causes these meltdowns, but often they remain a mystery. Our current theory is that his headaches are becoming more frequent, and he doesn't understand or know how to communicate to us the pain he is experiencing. When I visited him in the evening, he seemed fine (his caregiver had given him some ibuprofen), but during his evening snack, he suddenly became very teary and sad looking, and started hitting his ears. So we took an educated guess and gave him another pain medication which is a bit stronger. We think it did the trick, because he chose a movie and laid down on the couch and was quite peaceful for the rest of my visit.

While he was watching his video, I noticed that he was rubbing the back of his head, so I took my fingers and gently stroked his neck and head. He seemed to really enjoy that, and he also wanted me to stroke his legs as well. When he had enough, he just pushed my hands away. After the stroking session, he took off my socks (he often does that as a sign he wants me to stay longer), and noticed they were a bit nubbly on the inside and enjoyed the feel of the nubs. I put them on his hands like gloves, and he thought that was a wonderful idea. It was so cute watching him rub the socks together and enjoy the interesting feel of the texture of the nubs.

Later on, it was apparent that the medicine had kicked in, and he seemed to be out of pain, and feeling much more content, so at that point I gave him a kiss goodnight, grabbed the laundry (I am currently doing the boys' laundry as they discovered roach feces in the used apartment washer and dryer they were using...yuck!) and went home.

One of the most frustrating aspects of Ian's autism is his inability to tell us when he is in pain, or sad, or angry. When he has these feelings, the only thing he knows to do is to lash out, either destroying property, or becoming physically aggressive to himself or others. We have tried many different techniques to try and help him learn to express himself without damaging property or himself, but so far nothing has really worked. The episodes themselves are (thankfully) becoming less frequent as he ages, but they still occur, and it still breaks my heart every time. The best solution is to be vigilant and watch him carefully if he starts to get a bit agitated, and then try some interventions before he explodes. With caregiver turnover being so common and frequent, it is hard to get the consistency that he needs. This is where prayer and trust come in for me. Knowing that my son is in the palm of God's hand, and that He loves Ian more than I ever could imagine, and understands just what he is feeling, and that He will give us the wisdom to help him when we need it---well, that makes all the difference in the world.

I have to surrender the notion that I am going to figure this all out once and for all, and that all our problems will be over. No. God gives us what we need one day at a time, and the future is in His hands. Living with uncertainty is hard, but it's what we are called to live with. It's a good exercise in faith. So, I put my hand in the hand of the man who stilled the water, love my mysterious child, and forge ahead. Keep Calm and Carry On!

While I'm on a picture roll, I thought I would post a few relatively recent pictures of Ian. The first one was taken on my daughter's wedding day. He got all gussied up for the event, and while I'm not sure what he thought of the whole thing, his caregiver Kandace said he really enjoyed the music. The wedding was one of the most enjoyable days of my life, and my husband agrees. The love of family, the happiness of my daughter, and having dear friends all come together for the happy event filled our hearts with gratitude and love.

The next photos were shot by one of my best friends who was very, very patient, and very, very talented (thank you Sandy!) He was about 19-years old in these pictures, but still looks the same now that he is 23.

My beautiful boy, my teacher, my challenge, my heart, my heartbreak, my light and my gift. Thank you, Jesus, for all the highs and lows...even though I often thought the lows might break me into tiny pieces. You were always there to put me together and hold my hand. May everyone feel that all-surpassing love and total acceptance. Amen.

Just a quick little post. My son was in a nativity play for his special needs church group tonight. He had the grand role of the Star of Bethlehem! His caregiver Kandace stands behind him holding a star with lights on it, and helps Ian hold it. He usually winds up rocking side to side, so she calls him the "Dancing Star." Bless his heart! I'm not sure what he thinks about the whole thing, but I just love it when he is part of group activities. May you all be blessed this season by friends and family, and the love of our Lord Jesus, and may we all be "Dancing Stars!"

Not-very-exciting post/ Ian's kaleidoscope of emotions

A few days ago, I went to visit Ian as usual. This time his caregiver told him I was on my way over, and when I arrived, I could see through his window in his room while I parked my car. It was quite dark when I arrived, so he really could not see who drove up, but I saw him get up from his bed and look out his window to see if it was him mama who had finally arrived. It's hard to express my feelings watching my son look eagerly out his window to see if it was his mother who was getting out of the car. I waved energetically at him, and walked on in to his apartment. It's not always easy to know how much Ian enjoys having me visit, but this showed me that even if he does not express emotion like a "normal" person does, he still is attached, and still wants to have his loved ones come and visit him.

He seemed quite happy to see  me, and when Ian is happy, he is ALL the way happy! As I readied him for his bath, he started giggling, and swaying side to side in a dance-like movement. Then he pressed his face into my face which is his usual way to show affection. He is not aware of how strong he is, and I started losing my balance as he continued to press his nose to my nose. I finally said "I love you too, but try to be gentle with Mommy!" He loves his baths, and we do a lot of communicating and singing and playing during this time.

After his bath, he was ready for his dinner. He ate a HUGE dinner! The boy can EAT!! He ate six pieces of pizza in as many minutes, After the last piece, his face changed, and he began to look a bit concerned (and a bit green.) I think what happened was the old "his eyes were bigger than his stomach" syndrome. He went to lay down on the couch with his blanket over him, and got very teary and weepy. I asked if his tummy hurt--no response--and then I asked if his head hurt, and he seemed to nod his head. Unfortunately, it seems that Ian has inherited my proclivity toward severe headaches (it runs through both sides of the family.) Because he is non-verbal, it is always a guessing game figuring out what could be wrong with him. It can lead to violent outbursts on his part due to both pain and frustration with communication. We gave him an ibuprofen, and I left the staff with the instruction to give him something stronger if he continued to show pain behaviors.

This is really an average night at Ian's apartment. Of course, I also have a relationship with his roommate, so I spend time greeting Ron and giving him hugs and attention. Once my son took my hand and led me away from Ron--we all decided that he wanted my undivided attention, and was a little jealous of my paying attention to his roomie.

All this to show how Ian can go through a whole kaleidoscope of emotions in a very short time. He can be happy and dancing and listening to his music toys, and a second later he is overstimulated and aggressive and loud, and then switch suddenly to tears, and then back to happy. I would give a fortune to know what goes through that boy's head as he shuffles through all these feelings and reactions! I know that he experiences the world quite differently than "normals" do, and that he feels things much more intensely. What is that like? No wonder he likes to lie down with his blanket wrapped around him in a quiet room---he needs to recover from "life!"


Anyway--this is not a very exciting entry---but it describes a typical visit on a winter day: Videos, baths, snacks, hugs, one-way chatting, and sitting quietly with him while he does his Ian thing. Just observing Ian being Ian is always a lesson, always fascinating, and often entertaining.

Regret and Lessons

I seem to want to write these posts late at night (or early in the morning actually---it's 1:30 in the morning.) One of the interesting things I have discovered since Ian has been living out of the house, is that I have started staying up very, very late. It's almost a rebellious thing; I had been on a strict schedule where I had to get up every morning early when Ian did, so I couldn't afford to stay up late. Now I can stay up as late as I want to, AND sleep in until noon or later, so by gum, I'm going to! I usually surf the net or read, and I find I really enjoy this alone time. It's quiet and dark and there are no demands on me. I think that it sometimes annoys my family, but that hasn't prompted me to change this behavior yet. Perhaps I will get over this stage, and start sleeping and waking at normal times, but right now I am reveling in the freedom of being able to do this one small thing.

I was thinking about regrets. Regrets I have about how I've managed this journey through autism land. Mostly, I think I've done the best I could do, and I certainly have enough love for Ian to fill an ocean, but there are regrets. The biggest one is that always, in the very deep, dark, cobwebby recesses of my mind, I was often thinking "I wish I didn't have to do this...." If that is your refrain, it causes secret resentment, which leads to exhaustion and bitterness. Sort of the "Why Me?" syndrome. I would have saved SO much energy, spiritually and physically, to have just waived my inner white flag, and accepted all the way to the bottom my heart that this was what it WAS, and then just go about doing the next best thing I needed to do. I always "knew" intellectually that this was the path that God had given me, and as such, it was the very best path for me,  but I think there was always a small child having a tantrum in the deep, dark parts of my consciousness that just absolutely did NOT want to accept this journey. Imagine a two-year old flailing around on the ground shouting "NO, NO, NO!" and that pretty much illustrates what I was going through. I wish I had learned the lesson of acceptance, trust and faith much earlier. I think I'm beginning to learn it with my husband's health issues, ongoing issues with Ian's living arrangement and his periodic behavioral problems, and my own health stuff....better late than never.

I think that for parents that are still in the thick of raising autistic children--those that are still in the trenches---it would be wise to learn to let go of the yearning for a "normal" child early on, acknowledge that there IS resistance to what "is", but move beyond it to acceptance. If one is spiritual, one can give it all over (and I mean REALLY give it all over) to God, and trust that He will give you the tools you need when you need them. Not that it's ever easy. And  having a large support system is definitely essential to accomplish this. That is where there is a huge failure in our country. So many families feel so utterly alone in their journey, and that feeling can lead to depression and despair. It really DOES take a village to raise these children, and I don't think it's too much to ask for funding to be made available to insure that families are getting the help they need. It's all about priorities. There is always enough money available for sports facilities; there needs to be money available for struggling families. Well, I'll get off my soap box now.

Acceptance, Peace, Trust, Faith. All these things I wish I had soaked in and made a part of my life long ago. I would have been much more centered during the hardest parts of this journey. And maybe that's true for all of us no matter what challenges we face.

Merry Christmas/ Changes/ I thought this blog was gone, and here it still is!

Oh my goodness! I thought I had deleted this blog a long time ago, but apparently I'm so computer-disabled that I didn't accomplish that goal! LOL! Perhaps it's for the best, as I seem to feel the need to reconnect with my thoughts and feelings about this whole adventure.

So much has happened since my last post. My son is currently living in what is called a "Waiver Home" with one other young adult who has Down's Syndrome. Ian was living in a home with three other roommates, but his Provider decided to basically kick him out and not serve him anymore. What a shock and letdown! But God is absolutely in control, and we found another Provider and found an apartment for him to live in that is about 10 minutes from where we live. I go to see Ian, play with him, give him his bath, and just hang out an average of every other day. SUCH a blessing! Knock on wood, but his destructive/aggressive/self-injurious behaviors, while not perfect, seem to be decreasing (I'm almost scared to type that! I don't want to borrow trouble!) His living situation is apparently going to change again soon to a three person arrangement, which is fine with us, as it saves money and is usually more stable. As long as my child is near me, and thriving and happy, I am content.

My husband has been experiencing some puzzling and troubling health issues. He had a scary incident with his heart, and was hospitalized, but it turns out that he has benign heart palpitations, that while incredibly bothersome (sometimes he has so many in a row, he is out of breath!), not lethal. He has also developed something called Meige Disorder which is basically constant contractions of the muscles in the face which makes it very difficult for him to speak, and often causes his eyes to clench shut. Botox is the treatment of choice, and while it was beneficial in the beginning, it is now less so, which is discouraging. Since he is a college professor, this has obviously made a huge impact on his work life. The school is being very supportive: allowing him to teach only one class per semester, and next semester, having him teach an online course, but if things don't improve, he will probably pursue Disability. It is very, very hard to watch your husband suffer like he is suffering. He is very stoic, and has a solid spiritual base, but it does get him down, and as a wife, I want to do SOMETHING, and there is nothing I can do but love him. Which I very much do.

I am a grandma now! I have a baby granddaughter who will be six months old right after Christmas. It is amazing how much I love this precious little girl! To watch my daughter blossom into such a loving and attentive mother is a blessing to watch. Her husband is a great dad too. I'm sure this little girl will have him totally wrapped around her little finger. I look forward to spending lots of spoiling time in the future. Hey, that's what grandmas are for, right?

Ian is still one of the lights of my life. I must say that having him live in a group home situation has lifted so much stress and anxiety off of our shoulders. I have discovered what sleeping through the night is again after 22 years! As hard as it was when we first put him in a home, we did it gradually, so it wasn't as much of a shock. At first he came home three days a week, and then two and then one day. When he moved closer, and my husband's health deteriorated, we started having him come one day a week for a few hours of spoiling, and when my husband has reached his limit (his health issues cause him to become exhausted quickly and easily), Ian goes back to his apartment. There have been some staffing issues---the pay for working with these challenging adults is way too low, so there is always lots of turnover. Our Kandace is still with him. She has been with him since he was about 8-years old, and he is now 23, so she has been our rock. She is his stability in the shifting world of caregivers. If I could, I would pay the people that work with my son MUCH more money---they deserve it. On one of Ian's rare meltdowns, he chased one of the caregivers around with a lamp, and tore up his roommates diapers---these folks deserve at least a living wage!

The love I feel for what will be forever my "little boy" is profound and unchanging. I am determined to make sure that he has as happy a life as possible, and that he is safe and healthy. It takes a lot of vigilance, TRUST, perseverance, and faith in God, but it is doable one day at a time.

I hope to post more blogs in the future, and take some pictures of my handsome son and his living situation. Merry Christmas to all of you dear people, and may the New Year fill you with blessings and joy.