Strategies for Success

So the behavior specialist that was over yesterday morning called me back a few hours after she’d left and asked if she could come back over to discuss a few things. I got Javan down for his nap and told her to come on over. She showed me a TON of information from various websites that I can read over, mostly pertaining to ABA, and directed me to 6-10 hours of online courses I can take to help train me in ABA. ABA stands for applied behavioral analysis and it’s a method of observing specific behaviors, when and why they happen, and then slowly changing those behaviors. She’s confident this will work for Javan.

This week, starting today, she has me recording everytime he hits or threatens to hit or hurt, where he was, what happened right before he hit, who was involved, and how we redirected him afterwards. Today, I recorded seven hits and nine threats. After we’ve collected that data for a week, she’ll look over it all and assess it to help us identify triggers and help us begin to extinguish those behaviors. So, basically we’ll be tackling issues one at a time in order of immediate importance. And we’ll be getting training to make sure that the adults at school and at home are consistent with using the same strategies. In addition to decreasing unwanted behaviors, ABA can also be used to introduce and increase wanted behaviors and needed skills, so although there’s an intimidating learning curve I’m excited to have this strategy under my belt.

She also told me to focus on using a strategy called ‘precision requests.’ As you know, dear readers, I tend to use a lot of words. This doesn’t exactly encourage compliance in an autistic child with auditory processing difficulties. Nor does my emotional nature translate well to a child who has difficulties understanding facial expressions, tone of voice, and body language. Therefore, I’m to make requests using few words, simple words, in a flat tone. And I’m to make the request and walk away, count to 15, come back and repeat the request in the same way if the task has not been completed. Ok, seriously, this one’s going to be very hard for me. I mean, I’ll try it, but I’ll need some extra calming herbal tea or something.

She also asked if we’d had genetic testing done for Javan, which we haven’t. She said she sees possible indicators of a genetic abnormality or a possible syndrome and that if genetic testing detects abnormalities, we could obtain some really useful information that way. She doesn’t think Javan’s condition is any more severe than other cases she’s seen, she just gets the feeling there’s something different going on here. His diagnoses are all over the place, he has characteristics of this, that, and the other, and genetic testing could possibly help us narrow our focus. So I called the pediatrician, who agreed to refer him to a specialist in Dallas. I’m excited/nervous to see what comes of that.

The last bit of news she left me with was that her daughter, who is a psych major working on her master’s degree (not sure if that’s psychology or psychiatry) is interested in becoming Javan’s personal aide at school. Interesting. I don’t know when I’ll get to meet her and see how she and Javan do together, but at least we have a possible lead there.

That’s all for now. I think this is gonna work!

Let’s See Where This Path Leads

This week has been one of ups and downs. We’ve seen many positive behaviors, like being able to attend and enjoy a crowded local Christmas event and helping bring in groceries after a shopping trip without even being asked. We’ve seen some sensory overwhelm behaviors, like not enjoying the local Christmas parade and not being able to choose a Christmas ornament due to there being too many choices. We’ve seen some aggressive behaviors like swinging fists in people’s faces and hitting and biting when highly upset or anxious. And we’ve seen some highly concerning behaviors that seem like they could be pointing to another crisis,  like an increased urge to plan to hurt others for pleasure. And of course there’s the constant eating and increased sleep needs to top it all off.

I get regular calls from an autism care coordinator with our insurance company and when I told him about our progress with the school, he was encouraged and told me that while he has heard stories from other parents across the nation of other school districts with special needs services of this caliber, he’s heard many many more stories of schools districts that don’t offer anywhere near the amount of support were being offered. He said there’s definitely something different and special about this school from what I’ve told him. Lucky us!

This morning the school special education coordinator, behavior specialist, and diagnostician came over to our house. I’ve been preparing Javan for their visit for near on a week and I expected it to go well after their last visit was so successful. But it did not go well. See, last time they were just getting him used to their presence and building relationship and trust. This time the expected him to do stuff. He was having none of it. He literally answered three question and that was that. He was very avoidant, pretending to be asleep during the testing and sleep talking to boot. Does mumbling “Mom, there’s a giant ice cream cone in the living room” count as a test answer?  Probably not. He swung in their faces, but was careful not to hit them. Dad was another story. He was blocking Javan from going outside and he got plenty of hits and bites.

It was difficult to converse with all that going on, but we were able to talk about a few things. First off, they’re really thinking after observing him more that Javan might fit in better in the life skills room than the behavior room. He’d be higher functioning than the other kids in the life skills room, but they said he’s just so much gentler than the other kids in the behavior room and they don’t want him picking up their behaviors. Whoa, wait a minute, rewind. Did someone just say my kid was gentler than other kids?! That’s a first! They also said the life skills room has more technology he can benefit from since he’s so paper/pencil challenged. And, where the behavior room is just one open room, the life skills room is one room that’s sort of divided into three smaller rooms, which will make it easier to pull him aside for individual instruction and kind of give him areas to escape if overwhelmed.  It also has its own bathroom, which would be a major plus. It’s also directly across the hall from the sensory room Javan loved so much. We haven’t seen the life skills room yet, but they’re going to email me some pictures and we’ll visit it sometime. The behavior specialist also confirmed my thoughts that Javan will need a private aide that’s dedicated just to him and she suggested maybe trying to find a male aide which I think is an excellent idea.

Next week, the school occupational therapist will come by for a sensory evaluation. We’re looking at a tentative start date in late January if all goes as planned. It still gives me butterflies in my stomach thinking about sending him to school. It’s been a long time since I’ve shared responsibility for my kid and his personal growth. It’s a big step to take. My friends keep reminding me that I’m not committing to continue down this path forever; I’m only committing to try it and see where it leads. So here we go!

Hope for a Bright Future

I can’t believe Javan’s been home for two weeks and things are looking up! He’s really doing fantastic. When we saw his psychiatrist last week, he didn’t think the new meds were helping yet, but I really think they must be. We still have to be constantly vigilant and attentive and things are far from perfect, but major episodes are few and far between. As opposed to previously having several major episodes a day, we may now have two a week! I’ve noticed on these new meds, he’s constantly hungry, hungrier than he’s ever been. It’s like his brain just isn’t processing that his stomach is full. I can tell he’s already gaining weight. If the meds are still keeping him stable, I hope to begin making dietary adjustments in January. I’ll be learning more about the Feingold Diet throughout December and trying to shop differently so we’ll have mostly things you can eat on that diet come January. I haven’t wanted to start the diet earlier because too many changes at once equal failure and also because I like to know exactly what’s causing behavioral changes and changing meds and diet simultaneously won’t allow that.

Our restful weekend went fairly well. We put up our Christmas tree Saturday and he was so excited when he plugged in the lights! We have traditionally-shaped blue lights and then round white lights. He did that happy-gasp thing kids do when they see something that makes them truly happy and said, “BLUE, my favorite color! And disco-ball, my favorite shape!” I love his zeal for details.

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We got to visit his Weebo and Pops Sunday. He ate lots, watched tv and cuddled, and was able to play two rounds of UNO happily. Weebo, my husband’s mom, heard his laugh during the game and commented to me that he’s got his natural laugh back – a sound she hasn’t heard since before his birthday in August. It’s so great to see the real him come back, even just to catch a glimpse if him in the middle of a game.

He’s been sleeping more than usual, which is probably also due to the meds and will subside with time. For now, I don’t mind the extra rest. He’s only had one night this week where he’s struggled to fall asleep. That night, we could hear him singing loudly from his room, “Like a good neighbor, Daddy is there!” to the tune of the Nationwide insurance song. Sometimes he’d say Mommy instead. He was getting quite frustrated when we didn’t magically appear before him like the insurance reps do in the commercials. Finally, Dad went in and, guess what…he was hungry. Drat. But he usually falls asleep easily and sleeps for about 9-10 hours a night and then sometimes he still needs a nap the next day.

So far, it’s been a pretty busy week, but he’s done fairly well with it. Monday evening, Rosco’s trainer Hailey came to do the annual public access test that service dogs are required to pass yearly. That required both having dinner at a restaurant and walking around Wal-Mart. That could very well have been a recipe for disaster, but Javan held up amazingly well. He was bouncy and restless at the restaurant, but happy and engaged also. Rosco didn’t even flinch when Hailey purposefully dropped bacon on the floor in front of him and Javan told him to leave it.

We finished our meal and headed to Wal-Mart, which was a little harder for Javan, but still went relatively well. We walked around the aisles and gave different commands or created certain distractions to see how he would react. The only time that Javan had a hard time was the part of the test where a stranger has to come up and pet Rosco. Javan is so fiercely protective of his furry friend and he doesn’t like to share him with anyone. I found an adventurous looking blue-haired man in his 20’s that looked the part and explained to him what we were doing and asked if he’d be willing to pet Rosco. He said “sure,” my husband put Rosco in a sit-stay, and the man pet him on the head while Javan lost his stuffing about it. I was restraining him in a standing position, but apparently not quite far enough away, because he kicked the poor guy. I didn’t even see it happen, busy as I was trying to speak reason to my screaming, flailing 110 pound child, and I didn’t see the man react to it at all so it may have been more of a “kicked at him” or barely kicked him, but I’m not sure. All I know is the dude’s mom, who came out of nowhere, was very adamant that I know Javan kicked him and looked severely reproachful when I didn’t respond in whatever way she thought was appropriate. I apologized to her and her son and thanked him for helping us out and I explained that he’s having a hard time right now. And then I walked off, dragging him with me, knowing she was shooting daggers in my back. Javan got himself back under control and the test ended shortly thereafter.

Rosco passed his test with flying colors. I gotta tell you, that is all due to the excellent, truly exceptional training that service dogs receive at MADE in Texas. These last 4-6 months have been so difficult for our family. Rosco’s training hasn’t even been on the back burner during that time. It was more like stashed away in the metaphorical freezer, awaiting the day when I had time to thaw it and put it on the back burner. We’ve stayed away from public encounters as much as possible and then with Javan’s five hospital stays, Rosco just hasn’t gotten out and had the practice he needs and deserves. But even through all that, his training remained intact. Thank you Hailey and MADE for doing such a thorough job training your service dogs.

So that was Monday. Tuesday morning, we had more evaluations at the school. Javan did ten times better than he did with the previous evaluations. These two ladies who do the testing had noted all the behavioral challenges he’d had in the sensory room during the first test session and instead of just telling him he can’t go back in that room to test, they modified the whole room just for his visit!  They had seen how much some if the sensory equipment helped him and they wanted to give him the benefits of those things, so before we arrived that morning they removed all the tricycles and possible projectiles from the room and left the bigger equipment for him to use during testing. I am completely in awe of the lengths they have already gone to for him and he’s not even a student there yet! Javan’s Daddy also came this time, which helped him because Daddy is the person in the world who makes him feel the safest. The psychologist had remembered to bring him a cookies n’ cream bar and broke off little pieces to give hime throughout as he did well. He actually made it about 30 minutes with mostly good manners, no aggression, and very few peoblems. The second 30 minutes were harder as he got more agitated and began saying and doing rude, disruptive things. They decided just to get to the halfway mark of what they had wanted to get done, so we pushed him to finish that much. So they were able to get an hour total. I haven’t heard about when testing will resume or how much more there is to evaluate him on. I know he’ll have to finish what we started yesterday, do an occupational therapy assessment, and an autism assessment, and there may be even more than that.

Then late last night I check my email and see that the special education coordinator from the school wants to come over to my house along with the behavioral specialist who had observed the school testing. They gave me a choice between them coming this morning or next week. Those of you who know me know I’m not a great housekeeper and I would totally freak out about having school professionals in my home with less than 12 hours notice. Which I did. Freak out. A little. BUT, I know that time is of the essence because we need help sooner rather than later, so I bit the bullet and told them to come this morning for the “this is how we really live special.” And you know, it was really ok. They can help me more if they see things the way they really are as opposed to how I could make things look given time.

I was shocked that he did so well with them here! It doesn’t hurt that all the ladies who work at this school are drop-dead gorgeous. He loves pretty ladies. But still, they were from the school and they were entering his territory, so it made sense to expect him to react poorly to their visit. On the contrary, he engaged in conversation and allowed the adults to engage in their own conversations as well.

The special education coordinator, who he absolutely fawned over, distracted him in the living room while hubby and I spoke with the behavior specialist in the dining room. She asked us lots of questions about which situations he does well in and which ones he does poorly in, how he socializes and with whom, his favorite things and things he dislikes, his routine, etc. She said that from her observations, the most pressing challenge that Javan faces are his sensory needs and if we can work together at home and school to address those needs, many of his negative behaviors will correct themselves and the ones that don’t will be easier to address. She observed that he does show classic signs of high functioning autism and that his related poor muscle tone in his core and hands makes many activities, like writing, very difficult for him. She said paper and pencil writing will never be comfortable for him and at least for the foreseeable future he would benefit from using an ipad or computer in the classroom and using a smart board for big body input while learning. I’d never heard of a smart board, but they sound super exciting! It’s like a gigantic touch pad screen, bigger than a tv, so he can write and do educational activities with the big body movements he needs.

She talked to us a lot about how the behaviors she observed that would be viewed by others as disciplinary issues are really just sensory issues. Simply put, his body isn’t getting the input it needs and he’s seeking it in whatever ways he can.  For example, he will repeatedly swing his hands and arms in my face as if he were going to hit me. She said, “Think about the body movements he’s doing when he does that.  He’s getting large body movement, large  joint movement in his shoulders. Let’s think of another way he could get that movement.” Any behavioral problems that he does regularly, particularly repeated aggressive actions, I’m to think of in terms of, “What is his body getting out of this? What’s a healthy replacement activity he could try that might give his body the same input?” Its not really about me or the dogs or whoever he’s aiming his aggression toward; it’s about his body’s needs. He isn’t consciously aware of that and therefore can’t verbalize his need, but he’s seeking the input nonetheless.  And she talked to us about putting him on  a regular sensory diet to preemptively head off many of those behaviors. In short, a sensory diet is regularly scheduled sensory activities, tailored to his specific needs, that will give his body all the necessary input it needs for his brain to operate properly.

So I asked her what she thought about him going to school and being in the R&R behavior room. She said let’s just take it slow. We don’t need to decide right now exactly where he’ll need to be when. We need to take a few steps back first. She observed how he was actively forming a relationship with the special education coordinator in the living room. She said, “She’s not placing any demands on him. She’s not expecting him to perform in any way. She’s just forming a relationship of trust. He’s very wary, very cautious and can be paranoid. That’s what he needs furst, before ever ‘going to school.’ He needs to build a relationship with a teacher here at home. Then begin working on academics with that teacher at home. Then be in a one-on-one classroom setting with that teacher in the school. Then we can think about which room would benefit him best. Life Skills or the behavior room,  or a combination. We’re going to have to be creative and flexible to find the best situation to fit his needs.” Well, blow me over. Again, the flexibility and willingness to go to great lengths to create the very best situation for my child just astounds me.

She talked to me about the life skills room and how their learning is very practical and hands on. They learn math through cooking. They learn through board games. They recognize that these kids won’t learn the same way as everyone else, so they boil down the same academic concepts those other kids learn to their very essence, and then teach those concepts in ways these kids can learn. And, now this I did not expect, both ladies said that they felt like Javan would eventually be able to join the general education population. Maybe not for everything, maybe not for core academic subjects, but maybe for P.E. and science and things like that.

The behavior specialist told me she sees a bright future for Javan. That about brought me to my knees. It’s been a while since I’ve heard such hope from any professional. It gives me back more hope of my own.

More Good Days Than Bad

It’s been a week since I’ve let you all know how we’re doing, so before I go into the details of our days I’d like to give you a happy phrase to sum them up:

More good days than bad!

Yay!!! The bad days might be there, but the good days have ’em beat for now! I’m trying to create as stress-free and pressure-free environment as possible. We’re doing no schoolwork or formal learning and we’re staying home or in other relaxed environment as much as possible and avoiding the public. I know that’s not a sustainable life for him or any of us, but for right now it feels like the best thing to do.

Our schedule in the mornings is so relaxed that I almost feel ridiculous using the word schedule. We watch tv, eat breakfast, take meds, do hygiene (which is brushing teeth and putting on deodorant, which is hilarious because he swears it tickles him to put on deodorant even when he does it himself and he giggles the whole time), toy time (we play on the floor together), active time (indoors or outdoors, but I try to encourage outdoors), book time (me reading to him), doggy time (playing toys, brushing, or just loving), sensory play time (sand, water, play dough, etc), and lunch. After lunch is rest time where he will watch tv for thirty minutes to an hour while mom rests on the couch. Afternoons are either a sort of repeat of what we did in the morning, or if he had a really good morning we might try to go out somewhere like to a park or play place, maybe even meet a friend or relative. Behavioral difficulties tend to arise more in the afternoons or when we have to leave the house for an appointment of some sort.

Like taking our darned cat, Adso, to the vet. Adso is a sweet, loving, cuddly cat…for about half an hour a day. The rest of the day she spends on her own and you’d better not try to touch her or she’ll claw your face off. Well, if you’re an adult anyway. Somehow she knows Javan is different. She will let him do whatever he wants with her, and she won’t like it, but she won’t lay a claw on him. What she will do is pee on everything. The laundry pile, the couch, the crash pad, blankets, towels, you get it…everything. I ran into one of our vet’s assistants a while back and she mentioned that Adso could have a urinary tract infection. She was due for shots anyway, so I took her to the vet. I knew this would be a trigger for Javan’s anxiety and aggression. It always is. But it had to be done.

Javan helped me load Adso up into the kitty carrier and insisted he be the one to carry her. He never put the carrier down the whole way there. He did okay in the lobby, distracted with the other pets, and he only growled at one man. But as soon as they asked us to bring Adso back, he started in. “What are you gonna do to her!?” he demanded angrily while hunched protectively over her carrier. They said they were just going to take her back to the lab to make sure her tt was healthy. He wanted to stay with her, but I kept him in the exam room until they got done with her. He verbalized to me that he was feeling really nervous. I tried to calm him by talking about and looking at the interesting, albeit completely disgusting, posters and models of pets’ hearts, lungs, and teeth in various states of health. He couldn’t handle his anxiety any longer and ran out of the exam room, out of the front room, and out to our car.

I’m so thankful that the ladies up there know us, know him, respect his limits and needs. I just told them as I walked out that we’d be in the car and they were fine with coming to get me when she was all done. We listened to the radio and watched the pets going in and out, and then one of the ladies told me the vet was ready to talk to me about Adso. She asked if I wanted to come in to talk to the vet or if I’d rather have him come out to us. They are truly wonderful at caring for us. I didn’t want to ask a doctor to leave his office to talk to me in my car, so we went in. Big mistake.

We went back to the exam room where Adso waited in her kitty carrier, which she had peed in. Nothing was wrong with her urine. As suspected, she’s just a brat. He talked with me about options to help that issue, about spaying, and possible declawing. Yes I know declawing is horrible, but we’re considering it anyway due to torn arms and furniture. We discussed these options as quickly as possible, but Javan was going ballistic the entire time. He was going after the vet, swinging and kicking at him. I was blocking and holding him the whole time, looking over his head to maintain eye contact with the vet. What a way to have a conversation.

I allowed Javan to head out to the car with Adso while I paid. The vet’s wife, who is also his receptionist, kept watch out the door the whole time and kept telling me he was doing fine. I would have known anyways since I and everyone else inside could hear him laughing maniacally while pounding the horn repeatedly. As I left I apologized for the hundredth time for his behaviors and they hugged me and said they understand and not to worry and they love us. I am just so thankful when I find a safe place like that vet’s office in such a big, unsafe world. If we ever move, I would drive hours just to keep them.

After the vet, we came home to prepare some Thanksgiving dishes for the following day. I had purposefully chosen dishes I knew Javan could help me make. We don’t have a great track record with cooking together, but I thought I’d give it a shot. He loves mixing things, so I chose dishes that require tons of dumping and mixing. I chose my biggest bowl, much bigger than we needed, so he’d be able to stir really big and strong without making a mess. He did not want to help, but by golly I had my mind made up he was gonna. And he actually turned out to really enjoy it! He mixed his little heart out until his arm got sore and then I told him he’d done good and had earned his Thanksgiving meal.

I knew going over to have Thanksgiving with the big family would be a lot of stress for him and I was hoping being able to take pride in his contribution to the meal would help. He still had a very hard time there and hardly ate anything…except the dishes he had helped to make. He wasn’t kind and loving at the family gathering and he didn’t stay long. My mother, Saint that she is, takes him to her house every year when he reaches his limit so that my husband and I can enjoy time with his family. He spent the night at Grammy’s,  his all-time favorite thing ever.

The next day my brother and sister-in-law and their precious three year old daughter would be coming to our house for a second Thanksgiving and my mom and Javan would join us then. My brother and I talked on the phone that night discussing plans A,B, and C so we’d have the greatest chances of a successful visit. I love that he wanted to do that, knew that we needed to do that, knew that it might be a disaster, and was willing to try anyway. We’d been preparing Javan for weeks for this day and he was not happy about seeing his baby cousin Addison. He always convinces himself that she’s a baby and will slobber all over his toys. She’s not, of course. In fact, she acts very mature for her age. We were not expecting this visit to go well. At all.

But. It. DID. Oh, it went SO well. He had his moments of needing to be reminded about being gentle and giving personal space and he got sent to time out a few times in his room. But all-in-all, I was amazed at how great he did with Addison. With very few exceptions, she tends to bring out the best in him once they’re actually together. Once he got over his initial bristliness, he was even quite loving. He put his arm around her on the couch as they enjoyed a tv show together. He cuddled and played with Uncle CJ and Aunt Jessica. He didn’t love sharing his toys with Addi, but he did it. He even willingly shared a game of crash ball, where he and Addi would take turns running toward my husband who was sitting on the couch holding a huge hop ball that they’d crash full-body into. Javan and Addi took turns perfectly and Javan never expressed any jealousy over her interacting with his Daddy that way. They were able to stay for THREE AND A HALF HOURS! Javan finally maxed out on his ability to handle the crowd and he was getting irritable and Addi was getting tired. He did not want them to leave and had a very hard time saying goodbye and letting them go. He had a pretty intense meltdown, but even that only lasted ten minutes.

We have a few days of family down time now before the week starts up again. We probably won’t do anything more exciting than a trip to the dollar store for necessities. I may even declare tomorrow mandatory pajama day. Next week starts up in full-force. Monday evening, Rosco’s trainer from MADE in Texas will visit and we’ll need to complete his yearly public access training. That will require a trip to a restaurant and store. Tuesday, Javan resumes evaluations at the school. The rest of the week should bring more rest and down time.

If we have more bad days in the meantime, I’ll just try to remind myself that it’s ok. At least were having more good days than bad.

If, How, and When to Give Advice to Special Needs Parents

Maybe there’s been a time when you wanted to give a piece of advice or an opinion to a special needs parent, but you weren’t sure if it was a good idea or not. Never fear! I’m writing this guide for you to determine if your advice will most likely be well apprecited or resentfully rejected. Here are three simple questions you should ask yourself before doling out advice:

  1. Have you invested time and energy into building and maintaining a relationship with the parent and child in question? If your answer is no, stop here. You haven’t earned the right to an opinion. Do not give advice. If your answer is yes, please move on to the next question.
  2. Have you educated yourself about the child’s specific special needs and how they effect that child and family’s daily life?  If your answer is no, stop here. You haven’t earned the right to an opinion. Do not give advice.    Note: Knowing someone else with the same condition does not automatically qualify you as “educated” on a complex topic. If your answer is yes, please move on to the next question.
  3. Have you asked the person if they are open to receiving advice right now? If your answer is no, stop here. Please ask first, because now may not be a good time. If your answer is yes, and they said yes, CONGRATULATIONS: You have earned the right to an opinion and giving advice!

Now that you know you are in a legitimate position to give advice, is there a right and wrong way to do that? Great question!  And the answer is yes.

The right way: In love and encouragement and without accusation.

Example: I’ve noticed that a change in routine seems to cause anxiety in your child. Have you considered using visual schedules to see if that helps?     

The person in this example has invested time and energy in the relationship,  which is how they are able to notice a trigger for the child and a change in the child’s behavior.  They have educated themselves about this child’s specific special needs, which is how they know that anxiety is a factor and how they are familiar with proven strategies that may help. Their response is rooted in love and wanting to help the child.

The wrong way: In judgment and by exploiting fear of failure.

Example: Your kids gotta learn that things don’t always go their way! If you don’t teach them some flexibility, they’ll never be able to hold down a job!

The person in this example has not invested in a relationship with this parent and child, or else they would know how long and hard this parent has been working to teach flexibility of schedule. They have not educated themselves about this child’s specific special needs, or else they would know the problem is common and complex and has nothing to do with the child “always getting their way,” which is also accusatory. This person’s “advice” is not rooted in love, but in judgment: they accuse the parent of not teaching their child. It also exploits the parent’s fear that they will fail their child and their child will not grow to be as independent as possible.

So now we’ve talked about IF you should give advice, and HOW you should give advice, but what about WHEN?

Try to avoid giving advice at a time that the parent is overwhelmed. Wait until they are relaxed and can process your advice clearly. If the parent is going through a crisis with their child, you may be tempted to “fix it” right now because you don’t want to see them suffering. But it may be wiser to wait for a calmer time when the parent is not already berating themselves for not being good enough. During a crisis, just be there. Just love. Refrain from giving advice unless directly asked.

So there you have it. The IF, the HOW,and the WHEN of giving advice to special needs parents. If you are one of the lucky few who qualify as advice-givers, then thank you. Thank you for loving us. Thank you for loving our special kids and families. We need you.

Better Enough?

Thank goodness the last two days have been better. If things kept spiraling down as fast as they were, we’d have had to readmit him to the hospital by now.

Yesterday morning, our routine went fairly well although there was some hitting and throwing things at animals and at me. But the morning went well enough that we decided to take advantage of Texas’ last warm day for a while and meet some friends at the park. This was all planned with Javan and he was really excited to get to see some of his homeschool friends.

When we got to the park, he rode his Green Machine bike around the sidewalk a few times before the family that was meeting us there arrived. It’s usually a good idea to try to get to a place a tiny bit before others so he can have a few minutes to orient himself to place before having to orient himself to place and people. The sweet family that met us there is one we’ve known for years and one that can understand our lives better than most, as their kiddos fight some of the same battles Javan does. One of the girls brought her bike, and she and Javan rode around the sidewalk together for a few minutes. After that, Javan wasn’t super friendly. It was obvious that although he’d wanted badly to play with them, he just didn’t know how.

His friend suggested a game of Capture the Flag, or at least I think that was the game he wanted. Javan became defensive and angry because he doesn’t know how to play that and was anxious because he didn’t think he’d be any good at it and would get embarrassed if he tried. So his friend and his dad went to their car and brought back light sabers. Javan went to our car and came back with a toy sword that must’ve been under a seat or something because I had no idea it was there. Of course, he wanted to play too rough, but settled himself with striking a tree with his sword. He was happy because he could hit the tree as hard as he wants. Now, many people would only see that because he was sword fighting too rough, he was being aggressive and mean. But there’s another element to think about that often goes unnoticed in kids like ours: coordination. Javan has dyspraxia, a neurological disorder common in autistic people that effects his coordination and motor planning abilities. Gentle, controlled movements with a sword take much more coordination and planning than just using brute strength. I didn’t need to explain that to this family because they know him well and because their son also has dyspraxia.

Javan then insisted that it was time to go. He told everyone bye and rode quickly off to the car on his bike. The oldest girl of the family we met gave me a baggie to give him. In it were beautifully colored and scented homemade Lego-man soaps. She had some left over from a craft sale and wanted Javan to have some just because she’s a sweet friend. I will have to share a picture if the soaps in my next blog because they’re super cute and they’ll probably strike envy in my Star Wars loving friends’ hearts. I hope I can repay her in the near future.

He fell asleep on the way home and we had a quiet, restful afternoon. It was his spend the night night with Grammy and boy was he ever ready! He usually has dinner with her after work on Friday nights, but unfortunately she got off late yesterday and he was huuuunnnngggrrrryyy, a condition he’s found himself in increasingly often lately. So we met up with Auntie Darya and Uncle Alex at a quiet little Chinese restaurant. When they first arrived to the restaurant, he was prickly and unwelcoming, but by the time the meal was over he was giving them the biggest, sweetest hugs ever.

My mom said he had a great night and morning at her house. Not perfect, but really good. He slept well and for an appropriate length of time. They even went to the store and he behaved appropriately there. We met up for lunch to pick him up and he was happy as a lark, loving, and hungry as ever. Again, he fell asleep on the way home, but today a quiet, peaceful afternoon and evening was not to follow.

It was a really hard day for us. The transition from Grammy’s house to our house probably played into it some. Although that is a part of our normal weekly routine, it may have just been harder for him during this time. We were all sleepy when we got home. Javan hasn’t been napping for several months now, so when he’s sleepy he just rests on the couch and watches cartoons. He had been doing so well that we felt comfortable letting him watch cartoons for a short time while we went and laid down in our bed. I kept one ear open, knowing I needed to listen for signs of activity and when I heard him moving around I promptly kicked my husband out of bed to go sit with him in the living room (Sorry, Hon). My husband explained to him that he was going to finish his short nap on the couch so he could be closer to Javan if he needed anything.

When I got up, Daddy was snoozing on the couch and Javan and I had a snack. While we ate, he picked a butter knife up off the table and began pointing to his bedroom with it. I explained for the umpteen-thousandth time that I need him to use words. He told me he had a knife in his room. “A knife like this?” I asked, gesturing to the butter knife he held. “No, a real knife.” “Show me,” I said. He took me into his bedroom and brought our chef’s knife out of his stuffed animals bin, where it had been hidden under a layer of soft, fuzzy creatures. He gave it to me without hesitation and showed me where he had stabbed through his large stuffed dinosaur.

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“Why did you hide the knife?” I asked him.

“So I could tell Dad I was going to get a stuffed animal and then stab him.”

“You wanted to stab Dad with the knife?”

“Yes.”

“Why?”

No response.

“Were you angry with Dad?”

“Yes.”

“Why?”

“Because he was sleeping on the couch instead of spending quality time with me.”

We woke Dad up and filled him in. We reiterated that our knives are off-limits. Yes, they will be locked away even better for those of you wondering. We talked about better ways to let Dad know he’s angry and how to tell him why. But see, many autistic people have a problem learning generalization. Javan’s therapist’s have told me he definitely had this problem, which is why he doesn’t benefit from therapy. Today, Javan learned from a very specific situation, but won’t likely be able to generalize what he’s learned to use it in the future. He’s learned what to do and not do if Dad is sleeping on the couch instead of spending quality time with him and that makes him angry. If that specific situation occurs again, he might know that it’s better to talk to Dad about how he feels than to stab him with a knife. But he won’t be able to generalize that to other situations where maybe Dad has done something else that angered him or it is a different person altogether with whom he is angry.

After our family discussion, we tried to spend quality time with him doing something he liked. He consented to play Pokemon cards, but after five minutes he didn’t want to play anymore. He didn’t understand why he didn’t want to play anymore and was very frustrated with himself about it, saying “I love playing Pokemon, so I just don’t understand why I don’t want to play!” We tried to calm him. We told him everyone changes their mind sometimes and it’s ok, we could play something else. But he quickly spiraled out of control. He became very angry, especially at Dad, and was being verbally and slightly physically abusive. Nothing we tried was stopping his outbursts, so as a last ditch effort we decided to get out of the house for a while. Sometimes that works.

We needed dog food anyway, so we drove down the street to the Dollar General. His mood was extremely negative when we left, but by the time we arrived at the store five minutes later his mood had completely shifted. He was able to come in and behave in the store. We found a jacket his size for $6 and bought that for him. By the time we got back to the car, he was giggling and giving kisses.

We got home and did our bedtime routine, but about 25 minutes before bed, he said he was tired and wanted to go to sleep early tonight. Because we had extra time, he picked out an extra long bedtime book. He remembered that this book had been one of his Daddy’s favorites growing up and he picked it out especially for him.

These last two days have been better. Better enough to keep him home? We can’t decide, so I guess we’ll wait and see. I’m really hoping we can keep him at home semi-safely until the school has completed their testing, formulated a plan, and tried it out.

What Happened?

I’m at a loss as to what happened today and how to explain it. Maybe it was just a really bad day. More likely, it was an increased continuation of the slight aggression we had already been seeing in the last few days. If the aggression keeps increasing daily at this quick rate…sigh.

The morning started out ok, but I was already seeing some defiance and aggression toward the dogs and myself. Since we’d be driving 45 minutes to Tyler to visit the psychiatrist’s office, I asked him if he’d like to have lunch with Auntie Darya, my best friend who lives there. He said sure, he’d like to see her. Then when it was time to get dressed, he started experiencing a lot of anxiety over making sure he picked out the right outfit. “It has to be perfect!” he insisted. Apparently that meant no words or pictures on the shirt and he finally found one that satisfied him. He knew that after lunch we’d be heading to the school to answer some simple questions, so he got a backpack to fill with “knowledge stuff” in case they asked him questions about whatever random topics he’d be studying in the car. I assured him the questions would be about easy things he already knew, but he brought some books along anyways.

I often repeat the order of events for the day many times throughout the day so that he’s as prepared as possible and doesn’t get any surprises. So on our drive I repeated that we’d be seeing Dr. Fulsom, then having lunch with Auntie Darya, and then going to the school and answering questions. He got super angry and said that we were NOT going to lunch with Auntie Darya. He had absolutely no recollection of agreeing to lunch and insisted that I had misheard him. He said, “If you don’t cancel lunch, I’ll kill you.” I said, “Kill me? You mean like, I’d be dead?” He was exasperated. “NO, I’d kill you with pain! Gah, it’s just a saying, Mom!” I firmly reminded him that threatening mom was not acceptable and said we’d talk about lunch after we saw the doctor.

We arrived at Dr. Fulsom’s and he went right in. He hissed at the receptionist who had greeted him warmly. Then he went to the restroom and when he came out, he had wet himself. He said he just “missed,” but it looked for all the world like he’d just gone in his pants. Well, we were keeping our appointment anyway. Remember yesterday how I thought this visit would be so positive? Yeah, that didn’t happen. He was waiting by the door where the doctor would come out to call us in and ended up nearly swinging at the previous patient who came out when the door opened. He then ran into the doctor’s room shouting along the way, “I’M NOT SITTING DOWN!” I showed the doctor the list of meds he was on and asked if we could consolidate any dosage times so he’d be taking meds less often. He brought us down from taking meds four times a day to two. He’s still getting the same amount of everything though. The doctor turned on the scale to weigh him and he said, “NO WAY!” to which the doctor laughed and said, “OK, no weigh.” Good grief,  he’s good.

Javan then got extremely aggressive towards me and started turning off all the lights in the room and trying to escape. He punched me in the stomach a few times, tried to bite me several times, and threw my extremely large, heavy purse across the doctor’s desk, intending for it to hit the doctor. Luckily, he’s a really bad aim and he only nearly knocked over the doctor’s coffee. I had to stay leaning against the door to prevent him from escaping. The doctor was sitting in one of those computer chairs with the levers for raising and lowering, so of course Javan lowered it. When the doctor got up to raise it, Javan rolled the chair away and didn’t want to give it back. He finally did get the chair back and I’m not sure what Javan did, but Dr. Fulsom had to tell him firmly not to hurt him. As I’m leaning against the door I’m telling him how great Javan was doing and he said that was because Javan had been in the hospital. He said everything we’re seeing now is behavioral and that the progress couldn’t have been due to the medications because he hasn’t been on them long enough for them to make a difference. Well, damn. I asked him if he thought we need to place him in residential treatment and he immediately said, “Yes. I’m sorry. But yes. And soon.” Damn again. I asked him about what the insurance lady had said about residential placements in children this young causing abandonment and attachment issues and he said, “Honestly, I don’t think that’s a problem in this case because he doesn’t appear to be attached.” “You mean he’s not attached to me?” “You or anybody else.” Ok, that one stung. And I disagree with his opinion. I do think Javan is very attached to me and his father and to his grandparents as well. But I know without a doubt that he didn’t mean that as a blow to me. He was giving his honest clinical opinion.

I canceled lunch plans in lieu of returning home for a change if clothes. We watched some TV and then headed out for the school.  We got into the school and signed in. We both desperately needed a bathroom. The lady in the office said we could use the nurse’s bathroom. He went first and then I had him wait in a chair in the nurses office while I went as fast as I could. I hate it when I have to pee in public when he’s like this, but sometimes it’s unavoidable. I come out thirty seconds later to see the nurse’s mouth hanging open as she stared in horror at my child, who did stay in the chair but was hissing and growling at her for all he was worth. I smiled and cheerily introduced myself and my son. I really didn’t know what to do with how he was acting or the appalled look on her face. I told her he was just scared because he had an evaluation today and explained that he wasn’t a student yet. She said, “I was just worried. I didn’t know if he was ok.” You and me both, lady.

Just then the diagnostician and school psychologist arrived and he began giving them the same treatment. Until they told him they’d be asking all their questions in the sensory room that he’d liked so much last time. He immediately gasped and gave a wide-mouthed grin of excitement. We walked down to the sensory room and he immediately jumped on the tricycle that you pedal with both your hands and feet and started riding around the room in circles. The diagnostician started in with some questions about synonyms like, “What’s another word for good?” He rode around and answered questions. He got frustrated or refused to answer when he didn’t know some. He got bored by the time we were on antonyms and started chucking things at the diagnostician and trying to bump her with his bike. I suggested we pause her questions and take a break and then maybe move on to the psychologist’s questions. After his break, the psychologist asked questions that were rating statements on a scale of “always, often, sometimes, or never.” As you can imagine, that was harder for him. Then she moved on to yes or no questions which were easier, but he got uglier and uglier as it went on. Throwing things at everyone, trying to turn off the lights or run out the the door, trying to run people over with the bike. Oh, yeah, and at some point the principal came in and observed all this. Since this was only the first part of the assessments, and we didn’t even get done what they thought they could today, I brought it to everyone’s attention that the behaviors they were seeing are the behaviors he will display in the classroom and that obviously isn’t doable. I asked in a non-confrontational way if they thought since even just the evaluations were this difficult if we could just skip to outpatient or residential treatment, especially since that’s what his psychiatrist was recommending. They said they’d actually already discussed that with the school’s lawyers and it can’t be done that way. They have to have documented enough trial and error to be able to justify placement outside the school. They did tell me that all of the behavior we saw today during testing would be documented and asked me to get Dr. Fulsom to write a letter detailing why he was recommending residential placement so they could add that to their records.

We were in and out in 45 minutes or less and back home to relax. We played toys which, just as this morning’s toy time, turned out to be pretty disturbing. His cars were wanting to rob a jewelry store and my cars were supposed to try and stop them. But his toys always turn out to be quite undefeatable. His cars knocked my cars out and when they inconveniently revived, his cars made all my cars blind. When my cars were still trying to stop his cars from thieving by using their sense of hearing, he deafened them also. His cars successfully completed the robbery and then, because my cars had tried to stop them, they were tortured with snake stings, set on fire, and exploded. Aaaaand then we were done playing. Even in play, when he’s happy, his thoughts are turning so dark.

This evening, Daddy was asking him why he was so aggressive today. He said, “I just don’t know how to control it. I’m just mad for ten minutes and then happy for the next ten seconds.” He then proceeded to be absolutely perfect for the entire evening. Ate a good dinner, asked to be excused from the table, played a game of Pokemon, visited with Grammy who was over for the evening, took meds, brushed teeth, and went to bed with no fighting.

Ugh. It’s not that I’m ungrateful for the relief and happiness of the evening. It’s just very hard to discuss our options when my husband isn’t seeing the bad behavior and aggression first hand. I mean, he believes me about what the day was like, but being told about it and experiencing it are not comparable.  I don’t even know what residential placements are available or if insurance covers them or where to even begin with all that. Because of Thanksgiving coming up, the school can’t resume testing for nearly two weeks. Testing will probably take a week or so, then they have to put together a plan, then begin transitioning him into the classroom starting with only an hour a day. Then if it isn’t working at the school, they can consider residential placement. And what if things continue getting worse? How do we survive that long? I wanted the hope to stretch a little further, a little longer.

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