Pictures of Invisible Disorders

Asperger’s Syndrome, or high functioning autism, and Bipolar Disorder can be difficult to grasp because they are, indeed, invisible disorders. So, how can one go about better understanding the everyday struggles of people affected by these disorders? This week has presented me with a whole host of examples in the form of messy, physical manifestations of messy, emotional symptoms. Let me show you a few.

This is what ANXIETY looks like:

ImageAnxiety is present with both Asperger’s and Bipolar, but this one came straight from the Asperger’s within. We were expecting company. With a child. And Javan was expected to share his toys. So, it made perfect sense for him to attempt to thwart their coming by dumping sand and soil all over our front patio. How could they possibly get past this obstacle?

This is what RAGE looks like:

ImageWell, the effects of the raging were probably more picture-worthy before they were cleared to the side so I could enter the room. Javan had been sent to time-out, probably due to not sharing toys with the aforementioned visiting child. I honestly don’t remember. Upon attempting to open the door to release him from time-out, I found that I could not in fact open said door. It was blocked by every single book that my book-loving sweetheart owns. He dumped. Every. Single. Book.

Another example of rage includes slamming doors super hard. Like today, when he realized we were out of the food he really wanted, and he slammed the refrigerator door so hard that it broke, resulting in 20 bottles of condiments laying in a puddle of homemade salsa and broken glass. And a broken refrigerator door. At least it still closes and seals, though it holds nothing.

Now’s the fun part! Let’s combine Asperger’s and Bipolar and see what the situation looks like. As I’m ordering the dogs into their crate to prevent glass-filled paws and tongues, and as I’m elbow-deep in salsa-and-glass-filled paper towels, Javan wants me to come “open my present.” This is a variation on the Robo Pup game that we’ve played every day for four years. Usually at least five times a day. He hides in the laundry basket, covers up with a blanket, and I receive the best gift of my life. It’s not always Robo Pup these days. Sometimes it’s a cheetah, pig, lion, dinosaur, or alien. Anywyay, how is this a sign of Asperger’s? Because he’s lacking the social awareness that is so obvious to others. The awareness that I obviously can’t and probably don’t want to play right now.  So, as I’m cleaning the mess, I’m also talking over the dogs to explain how he should think about what Mom can and cannot do while cleaning the mess.

This is what POOR PSYCHOMOTOR COORDINATION looks like:

ImageYes, I realize that’s a crappy picture and you can’t tell what you’re looking at. So I’ll tell you. You’re looking at the only houseplant I own, knocked off it’s ledge and splayed in the most nook-and-cranny, hard-to-clean place it could find to bless with its soil. Oh, and this one’s right out of the Asperger’s handbook. Lack of coordination is rampant. It also means that the kid gets enough scrapes and bruises and falls flat on his face so many times a day that it’s a wonder we’ve never been accused of child abuse.

This is what OCD tendencies look like:

ImageAwwwww, he’s doing the dishes! Cute, right? RIGHT? We know when he starts his obsession with water, things are about to get real. Potions abound, usually containing whatever liquids he could find in the fridge, water, soap, and occasionally toothpaste. So, ok, he’s just playing with soap and water. I let him. He uses measuring cups and spoons and fills this container from that one and so on and so forth. It’s like math…or something. Until this happens:

ImageHe had helped me make dinner that night. After I set the table, he graced us each with two Cheetos and a mug of noodle soup, the ingredients for which are soap, water, and leftover spaghetti and sauce from the fridge. And getting him out of the way long enough to remove this matter from the table was difficult. He was not about to let all his hard work go to spoil. And, no, OCD doesn’t always go along with Asperger’s or Bipolar, but in our case, obsessive tendencies increase with bipolar mania. Fun times!

So, there you have it folks. An invisible disorder or two magically brought to visibility before your very eyes. I hope it’s helped you gain some insight and understanding!

Don’t Give Up

Man, oh man, how I want to. Give. UP. When every trip to town or attempt at socialization is a slap of failure in the face. When I’m embarrassed to let anyone see how very not in control of my child I am. When it’s a guarantee that if we leave our cave-home, we are setting our son up for a meltdown. I just want to quit. To stay home where it’s safe. Where there’s no one to judge us save ourselves.

Why would we continue to keep attempting socialization opportunities when we know he’s NOT going to socialize. Why keep paying for field trips with our homeschool group or Cub Scouts when we know we’re throwing money and evenings down the drain? Because, this:

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and this:

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and THIS

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I stood whisper-yelling at my husband in the bathroom last night to just LET US QUIT. Javan hates Cub Scouts. Every time we go to a meeting, it’s hard on all of us, he doesn’t participate, and we end up humiliated and reeking of failure. But at my husband’s stubborn insistence, we went on a Cub Scout field trip to Callie’s Acres last night anyway. Even though Javan had been screaming his unwillingness to go for hours. Even though for the life of me I could not wrangle him out of his pajamas and into his blue jeans.

So, we grabbed him kicking and screaming from his room and got him dressed. It was a team effort. And he still had his pj’s on underneath. We marched him fuming to the car. We got him there and he refused to put on the field trip t-shirt that all the other kids were wearing or participate in group photos. No big. We didn’t need to fight those fights and we didn’t.

My son’s Daddy was the only parent on the hay ride. I was so proud of both of them. They were surrounded by kids singing Old McDonald at the top of their lungs and they did splendidly. Then Javan was afraid of the ducks. Didn’t want to go near them. But Daddy took him over on his shoulders until he couldn’t handle the curiosity anymore and he climbed down and joined the other kids in giggling when the ducks nibbled their fingers. He climbed on the playground with other kids. He did GREAT!

I am on cloud 9 talking about that. And at the same time on cloud 0. Because there is a price for success. To quote one of my favorite TV shows, Once Upon a Time, “Magic always comes with a price.” Well, our evening magic’s price came due this morning. Anytime after we experience a triumph like we did last night, we pay. Javan has been in time out so much this morning. He’s probably spent more time in there than out today, which is why I am afforded the opportunity to blog in the middle of the day. I can’t get him to do his schoolwork, or obey, or be respectful. And it sucks and I hate it. But IT WAS WORTH IT.

So parents of challenging children, children with challenges, however you want to say it. Stay strong. Keep each other strong. Because your partner will want to quit sometimes. We all do. But you can’t let them. We have to take turns not letting each other quit. And grandparents, aunts, uncles, friends, when a time comes when we both quit, pull us back up. Don’t let our families, the families of children with autism, bipolar, and other challenging struggles live our lives in caves.

I recently expressed to one of my best friends in the world how sorry I was that we are always so unpredictable, unreliable. How much I hate that when we try to get together and do something that it so often ends in disaster and our something is ruined. She told me not to worry about it, because “You’re worth it. You’re always worth it.” Those words are the ones we need from you. Say them. It matters.

It’s Still Cold

I was very intentionally waiting for a time when things were going well before I wrote again. But I’ve been waiting too long, and that time has not come. Things are not going well. It reminds me of this Club Penguin comic that’s one of Javan’s favorites. So, this penguin in the North Pole decides to take up as a weatherman. He’s all excited his first day or two to report the cold weather. He becomes gradually less enthusiastic as he realizes that’s pretty much all he’s ever going to report. Eventually, he just stops showing up to work. In his place, he’s taped a sign to the weather screen that says something like, “Yep, it’s still cold.”

Well, folks, things are still cold here. About three months ago, Javan’s Risperdal stopped working. That’s the medicine that controls his bipolar symptoms. We couldn’t up the dosage anymore, as it was already causing significant weight gain and could cause heart problems if the dose went any higher. So we decided to try one last medicine. The doctor was very straightforward that this was the last thing to try, so we really duked it out hoping for the best. We did a 10 week trial of Geodon. It was awful. I won’t even go into the details except that it was just awful.

I called the psychiatrist in a bit of a panic when I finally admitted to myself that we had to get him off that medicine. He reassured me that it would be ok. We got him off the Geodon, went back on a lower dose of Risperdal, and made an appointment. The doctor told me he still had some tricks up his sleeve. Waiting for that appointment was hell. But it’s only gotten worse since.

Apparently, the trick up his sleeve was very limited, and I rejected it on the spot. He had us go back up to the former dose of Risperdal – you know, the one that had quit working? – and suggested we might add something to it to help with the weight gain. But the additional medication would also dull his cognitive function. Well, cognitive function is sort of important to me as his mother and teacher, so that one bit the dust hard. So what now? He said just get him on the former dose of Risperdal and pray. So basically, the field of medicine is out of answers. We just take it the best we can and we pray.

Javan’s been back on the upper dose of Risperdal for three days and it hasn’t been pretty. Let’s paint a picture of a day in the life. We sleep in, not a bad start. The Risperdal can make him sleepy for a few days when we increase it. We attempt to get some schooling done before the Occupational Therapist (OT) arrives. I say attempt, because, well, some days it’s going to fail. More days lately than usual have been total fails. I try not to take it too hard because this would be the case for him no matter what school he was in or what teacher he had. At least we can pick back up where we left off so he doesn’t get left behind. We have 12 school jobs to get done each day. We get 1.5 school jobs done before all hell breaks loose and he’s out of control and I’m going right down with him. He’s yelling and fighting and I’m yelling and stamping. Beautiful, huh? We get calmed down and I give him some time off before the OT arrives so that he’s not a complete mess when she gets there. But he quickly becomes a complete mess when she gets there anyway. He’s growling and hitting and talking like an angry robot. He comes at her with a toy sword, I deflect, and he’s in time out to use any one of his many calming techniques in there (rocking chair, hammock, bouncy horse, etc.). He comes back out and before I know it he is coming after her with a pool cue. I was right on him and he never got near her with it but still. I had to ask her to leave. No therapy today. We eat and watch tv and I generally walk on egg shells to try not to set him off again. We get back to school, and it goes better. We figured out quite by accident that letting him do his seat work in roller skates helps a great deal both in focus and quality of work. He just rolled his feet all around on the floor while he worked. Whatever works. Fast forward to this evening. A pack meeting at the cub scout pack we joined a month ago. Each and every den and pack meeting has been a complete and total disaster. Tonight was no exception and I left by asking for our camping money back because there is no way our family will survive camping this weekend. What was I thinking? I foresee us having to leave the pack altogether and count cub scouts in the “expensive mistakes” category. Bedtime did go off without a hitch, to my immense relief. And now we wait for tomorrow.

We are left hopeless and lost. We can’t help our son. We can’t heal our family. We can’t. I want so badly to find the answer for him. I can still look into special diets and natural supplements, which will undoubtedly add to the expensive mistakes category. But we have to try. Because bipolar disorder is winning. And I can’t let that happen.

I Don’t Wanna

I don’t wanna. That’s pretty much the attitude I had when the psychiatrist suggested adding in a new mood stabilizer  with his current one and eventually weaning off of the one he’s on now. We’ve seen such improvement on this medicine. Long-term improvement. His social skills have improved tremendously, especially with other children. His communication has cleared, his thought process are more linear, he has fewer meltdowns, I have fewer meltdowns. It’s just been good. Not perfect, but that’s not my goal. Good is good.

I asked a lot of questions about the new med. A LOT. And eventually, we decided to leave his meds the way they are for now, and see how it goes until our next visit. Which is in 4 months. I never imagined we’d be able to go that long between appointments. Last year we were on a 2 week appointment schedule, nothing was working, and we usually were in every week anyway with emergency visits. Now we’re going 4 months for routine checkups? Well, I’d say that’s major improvement.

The doctor also recommended a sleep aid that can have behavioral benefits as well. We decided to try melatonin first. So I need to start that. I’m just so hesitant to change anything right now. I’m afraid if I screw this up, we’ll never get this level of normalcy back. The psychiatrist did point out that I’m thinking of the “right here, right now” and he’s thinking more in terms of the future. This is probably true.

In the last few weeks to a month, we’ve seen changes in Javan that point to mania. The sleep aid is because his average amount of sleep has dropped 2 hours and become much more interrupted than it has been. The doctor said that if we’re looking at true bipolar disorder, controlling his sleep is the number one factor I should focus on to maintain stability. If the sleep goes, stability goes with it. Manic traits we’re currently seeing an increase in also include defiance, grandiose ideas and plans, and hypersexuality.

Let’s talk about that last one for a moment. Yes, it is a major concern, but it is a common hallmark of manic episodes for many bipolar sufferers. Last year when he was much, much more manic than he is now, so his last manic episode, his hypersexuality was very much in the form of actions. Of not understanding boundaries of touching and looking. This year, it’s more in the form of thoughts and almost actions, but you can see him hold himself back because he realizes it’s inappropriate and unacceptable. HE REALIZES IT’S INAPPROPRIATE AND UNACCEPTABLE. That’s huge, ya’ll. He’s getting it. Social rules, spoken and unspoken, are becoming his rules.

Grandiose ideas and plans, what are those? Well, that’s when he makes impossible plans on the spur of the moment and then refuses to hear of anything else until his project or plan is complete. Such as? Such as building a two-man airplane on boys’ night in. None of the other normally exciting activities suggested were even considered. They were all tossed aside as insignificant next to his grand plans of the aircraft. He plans materials, strategies, time frames, all of it. Building robots is also a favorite plan. Not the cute little table-top ones either. Full-sized anamotronic humanoid robots. And yes, he does know what all those fancy words mean, even if spell-check doesn’t.

Still, these things don’t add up to a medication change in my view. At least not yet. Not when things are so doable. Not when three hours a day for a whole week of VBS was successful for the most part. Not when focusing on schoolwork is possible, even with tons of challenges. Not when socializing with friends is possible. And when wanting friends is a reality. I need those things. He needs those things. Could a medicine change make those things better? Yep. Could it make them worse? With a certainty. Like I said, I just don’t wanna.

My Big Second Grade Boy

My little boy is a big second grader. Finishing first grade was a struggle. I am so proud of him, and of myself, for pushing on through. I think he’s really enjoying thinking of himself as a second grader. He seems so confident in his abilities.

We ran by the library this afternoon to sign up for the summer reading program and we came home with a Batman book,  two Bob the Builder books,  and a Bad Kitty book. Well, who can go into the library and escape empty-handed? We really wanted to rent this one specific Bob the Builder book that has the audio CD with it, but they (*gasp*) didn’t have it! This book is very special to Javan as he has rented it many, many times over the years and he just looooooves audio books. Ms. Anne, one of our amazing children’s librarians who knows Javan and has watched him grow up, wanted so badly to help him find a good one. She found one of her favorite children’s books with audio and suggested it to Javan. I was so proud of his reaction. Although it was obvious that he was disappointed in not getting the book he wanted, and although he did not want the book that was being suggested to him, he was so polite. He simply said, “No, thank you. But I appreciate the offer.” My grown-up boy made his mama glow with pride.

Then, on the way home, two more big boy moments happened. I was explaining how the reading program works and prizes and all that stuff, and he said, “So I’ll read one of my readers every day!” He knows very well that being read to counts perfectly well at this age, but he offered up reading to me anyway. This is HUGE, ya’ll. AND…I heard him flipping through his Batman book trying to sound out all the “Bam” and “KaPow” sound words! He’s beginning to think of himself as a reader!

I’m so glad there are kind, loving, caring people in the world like Ms. Anne, who want to help children overcome disappointments and grow in character and learning. And then, of course, I am reminded that there is a flip-side of every coin. I’m already irritated at the number of people, adults, mind you, who feel the need to conversationally criticize my child for what they call “staring.” I know they mention it to him because it makes them uncomfortable, but still, he is becoming quite a good communicator (see above response to librarian) and I wish  people could just see that and not nit pick every little thing. He’s not staring. He’s making more eye contact than you deem appropriate, or more likely, he has paused and gone inside of himself to internalize the communication that has just transpired and he will rejoin you in a moment. In any case, here’s what I’d like anyone who is listening to take away from this little rant: If someone you are talking to or just find yourself near for whatever reason seems a little off in whatever way, don’t criticize or judge them. Smile at them and show acceptance. They don’t want to be “off,” they want to be normal. Adult, child, it does not matter. We all crave acceptance. Why not give it?

So, as I said, I’m already irritated by this when I go into the auto parts store to get a wheel bearing for my husband’s bike. We’re standing at the counter when an elderly woman who works there comes up to the counter and smacks it…twice…practically shouting at Javan, “Hey! Hey! Why you frownin’?” I guess this was her way of being friendly? Maybe she gets a happy response from typical children? I wouldn’t think so, but maybe. Well, he just “stares” at her, well real staring this time, and has absolutely no idea what he’s supposed to say. I try to let him answer for himself, but knew he was lost this time, so I prompted him…”Javan, were you frowning?” At least that would give him some sort of answer? He just shook his head no, dropped to the floor, and crawled away to a corner. She replied, “Rudie!” I was dumbfounded. She just called a six year old a name. He was being rude? I said, “My son is not rude. He’s autistic.” Looking back I should have said, “He isn’t rude. You scared him.” Because, although the speechlessness and crawling to a corner behaviors are what I consider autistic responses, the issue here was not his behavior but hers. Hindsight’s always 20/20 I guess. Of course after I told her that, she was apologetic and friendly, like with actual friendliness this time, and he was fine. I’m choosing to see progress in this situation. Javan did not scream, cry, hit or throw anything at the woman…a short time ago he would have. I didn’t hit her either. So there’s that.

And I don’t know where that leaves my message. Because, really, I can’t ask everyone to go around communicating with people as if everyone the meet might be autistic. I can’t ask people to change the way they interact with others just in case one of them is autistic, or special needs, or just sensitive. Or can I?

Saying Goodbye

I’m a liar. One month and four days ago I wrote a blogpost called “She’s Here to Stay.” I reassured my son that Holly would not have to leave us, ever.

Well, she wasn’t here to stay I guess. Not for now anyways. A week and a half ago, she bit Javan on the stomach. She didn’t draw blood, but it was a big enough scratch and left a bruise. He’d been running past her and bumping in to her playing “crash ball.” That’s a game where Daddy sits on the couch holding an exercise ball in front of him and Javan runs from across the room and crashes full-body into it as hard as he can. It’s sensory stimulation he loves.  Well, I guess that one particular time he’d run past Holly was one time too many and she snapped.

Then I found out that she bit a boy on the arm at church Sunday. It was not more than a nip. The boy’s teachers didn’t even know that it happened. But it shouldn’t have happened at all. We took her back to the trainer today. For at least a year.

Not only was she not ready yet, but I also wasn’t able to keep up her training as well as I should have. And Javan isn’t ready yet. I guess there’s a reason why most service dog agencies won’t allow a child this young to have a dog. And they won’t allow a child of any age who has aggressive tendencies to have a dog. Because it messes up their bond. I saw that to be true. His bond with Holly changed when he stopped allowing her to comfort him and when he started being aggressive towards her. Do I think he’ll be less aggressive in a year? Honestly, no. That’s been a part of his personality since birth, and I don’t see it going away anytime soon. Well, not ever really.

Do I know what that means for our future with Holly. Not a clue. We will try to maintain team training in Dallas at least once every 2-3 weeks. And if nothing else, Holly will be our friend. And it will give us opportunities to spend with our family there.

Right now, Javan is sad. He didn’t cry when we told him she would leave, or any day since then. He didn’t cry when he said goodbye. And he didn’t cry when we came home without her. What he did was get his butterfly book with all the drawings of the caterpillars/butterflies from our kindergarten science experiment (about a year and a half ago), curled up face down in a fetal position under the pool table with his forehead resting on the butterfly book and say how much he missed the butterflies. He stayed there for a long time. He knows the butterflies are never coming back.

For those of you who know Javan and who will see him, please if you read this don’t ask him where Holly is. Just act natural.

Lies and Progress

I’m not ok. How am I not ok? Three days ago, I was on cloud 9, thinking we’d made all this progress and life was all roses. Well, that’s a good place to start…

Thursday, we went on a field trip with our homeschool group. Most times, that in and of itself is a recipe for failure. It means we have to leave home, follow expectations outside our norm, and socialize. We went to a local place called Safety City, where kids learn how to operate safely in a miniature city as a pedestrian, cyclist, and car driver. It was kind of special because both his dad and I remember going there as kids. He did…fantastic!!! We received one of the best compliments from this sweet firefighter:

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She has a working dog of some sort, and she commented on how well Holly Lou was doing despite a plethora of distractions. There was traffic just on the other side of the fence, a group of excited five and six year olds moving all around, and her own excited six year old dragging her in circles in excitement. She performed spectacularly. In fact, she said that Holly Lou was THE BEST working dog she’d seen in a long while. I’m all smiles.

After our extensive time with the firefighters and their super cool truck, we went in for a safety discussion with a police officer, and then finally on into Safety City for some hands-on experiences walking, biking, and driving. The kids were divided into groups. Our group contained six lively boys. Again, Javan did great. Here he is as a cyclist:

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A car driver:

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And finally, as a walker:

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That last picture is my favorite of the three. Let me tell you of its amazingness. If there ever were two boys who were so alike they did nothing but butt heads, it’s these two. We’ve spent plenty of park days together and they’re attracted to each other as playmates because they love all the same things. But they hardly ever play nicely. THIS moment took my breath away. Without any adult intervention, and in fact without any verbalization even to each other, they just…connected. There was no, “Hey, wanna be friends?” Or “Can I hold your hand?” They were just walking along and it happened. They each made a sweet friend. I loved it so much.

After Safety City, we did something we almost never do. We continued our day outside of home. Gasp! Usually it’s a “one and done” thing. Experience success and then get home before you ruin it! Well, instead we visited a small local private school where I was borrowing some materials to try out for next year. We made sure to arrive at lunchtime, and Javan played on the playground. Successfully! I mean, okay, maybe he didn’t understand that when you play chase, the purpose is not actually to catch someone. But, that’s just rules he didn’t know. He did fine!

And then, we still didn’t go home! We went to park day! Where there were more kids than usual because we were having a party. Did he do fantastic? Well, yes he did! He even played with the other kids! Not just played by himself and tolerated others being in his park, which is his typical MO. Now that’s  a good day!

So why am I saying that I’m not ok? Well, because that idea of success and especially of “progress” is an illusion. It seems to be a lie. Yes, there can be true, actual progress in certain specific areas…like cutting. Last year, I did all Javan’s cutting for him for two reasons. One, I couldn’t trust him not to stab me. And two, he hated the sound of cutting so much that he actually had to leave the room while I did it.Well, here’s a picture from last week:

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Guess what? He’s cutting! He asked to do it on his own. And he did great. So, there is real, tangible, true progress. But the idea of “overall progress” is a lie for us. It’s setting myself up for disappointment. Because it doesn’t matter if he can cut if I can’t trust him with the scissors. And there will never come a time when I can, without a doubt, trust him. He’s back to hurting people. In a big way.

He spent the night with my mom Friday night. He was on her bed. At the foot of the bed, there is a walkway, and then on the wall is a dresser with a tv. She was putting in a DVD for him, when he kangaroo kicked her hard right in the hind end. Jumped up and kicked as hard as he could with both feet. Then scampered up to the head of the bed and said in disbelief, “I saw that.” Like he didn’t even do it. I’m so glad her face didn’t end up in the dresser and she didn’t go to the hospital.

We had to have a talk with our six year old son about how he’s growing so big, but his self-control isn’t growing. And how if he wants to be around people, he can’t hurt them. We had to talk with him about the severe consequences that will happen if he doesn’t stop. He won’t be allowed to be around people he loves. The police will get involved. People will be hurt. Hospital trips will happen. We had to implement a “safe place” rule where if he feels like hurting someone, he yells “safe place” and runs to a designated area(at home, his room) to be alone. Or if we see him looking like he wants to hurt someone we say”safe place” and he has to go, no arguments. Ya’ll, it sucks so much to talk with your baby about these things. And the worst part is, it isn’t the first time we’ve had to do it. And it won’t be the last.

Saturday night, we took Javan to his first monster truck show. We had to wait in the parking lot for a while before going in. I tried to keep him occupied with charades and copycat games. But he got bored. And angry at having to wait. So he picked up a fist-sized piece of asphalt/gravel mix (because Texas parking lots are just like that), and threw it full-force at a group of people passing by. We were so lucky that it passed six inches behind one head and six inches in front of the next. I’m sure the people were very unhappy that we didn’t tackle him and beat him on the spot.  We were six inches either way from our first experience with the things we just talked to him about: police, injuries, hospitals.

So, he might progress. In specific areas. But does it really matter? If I can’t keep him from hurting others? If I can’t keep him or anyone around him safe? Does it matter that he’s gaining social skills here and there, motor skills are being improved, sensory issues are gradually becoming tolerated, or academics are coming along? Because the only future I can see is the one where he messes up anyway. It’s only going to take one event. I don’t know what or when, but I know it will only take one bad day to render all our “progress” useless. And that’s the day when I have to send him to a safe place to live. I won’t be able to be that forever. How much longer do I have with my baby? How long will I be enough?

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