Author: autismplusmoreblog

Yesterday we went for the psych appt and the doctor was very pleased with the progress, that is, that the medication Tyler is on is till under the maxium dose (as prescribed by the doctor) and that progress is being made through behavior therapy (Ms. Tamara) and we are also working emotions and calming techniques in OT therapy (Ms. Megan) and then …speech therapy (Ms. Claire)  as well, in addition to other OT and speech therapy items.  He was pleased to learn that we have incorporated breathing techniques, started with some yoga stretches, learning about busy brain (angry frustrated brains) and calm brains (happy and relaxed) learning about particular words that can be related to various levels of emotions on a number scale and incorporating colored coded words to match the number scale. Trying to recognize things and learning to cope with them.  (Example this past Saturday AM we went to Wal-mart for a our weekly trip and they had lost power so they were not selling any refrigerated or frozen items – we had to leave – HE WAS NOT a happy camper and had a mini meltdown right there in the store, it was overwhelming to him, we made it back to the car, with many tears and screaming and sat in the car and began breathing exercises. We changed the routine and went to HEB and it was totally different and he didn’t get a movie, but he helped with the shopping, still managed the basket, helped put away groceries when we got home.  It was still difficult, but part of the progress is that things like this are not all day events any longer and that we get through it.  I also know that just because he’s calm on the outside does NOT mean he’s calm on the inside and try to prevent rocking his world for the rest of the day – lol) But recognition and some of the techniques has helped tremendously.  We discussed the upcoming school transition which in addition to other issues in the classroom, had posed many problems at the end of school.  I told him about his ESY teacher being his new teacher (Tyler really seems to like him) and how just this week I placed it on the calendar so not to cause anxiety all summer.  That we are going to visit the school on Thursday, again for a refresher.  That I had made some changes over the summer, like having him help more around the house, dabbling with mowing the grass, cleaning the bathtub and toilet, (of course he takes out the trash) and doing other things to earn monies (in addition to his allowance) to buy the movies for his Kindle. I know Tyler doesn’t have the concept of everything (not yet anyway) and like the doctor said, look how long it’s taken to make progress in all the things he’s progressed in, just keep doing what you are doing.  I also kept with  transitioning him to front seat of the car and he’s now able to sit in the front and the backseat (if sissy is in the jeep he sits in the back), actually took him in the stores to go clothing shopping (with sissy’s help of course) and participated in trying on clothes and helping make decisions about clothing, these are all things of growing up, becoming a bigger boy and going to a new school (6th grade).  I told the doctor that I thought possibly trying to change so many of things that have been associated with elementary could help with a transition.  Not everything, but a few things and he agreed.  Told him that we have done a lot of work in speech this summer and that he still will have another year of speech in school (which IMO, he needs it indefinitely communication, cognitive thinking, etc is not 100% yet).  Told him I am to go back to ARD about 3 weeks after school starts to tweak Tyler’s IEP and he thought that would be a good idea. I did discuss a couple of things with the doctor that I already want changed in his IEP and he agreed that for now my thought process on this was probably correct and probably best for Tyler, so I will request those changes be implemented. Told him that Tyler has continued with his golfing lessons on Sundays before church and he was pleased to see that he liked and has continued with it for this long period of time. I told him that we practice out in the yard and that he’s getting a set of golf clubs for Christmas.  I told the doctor that he will also continue his participation in S.P.O.R.T.S.  program (this is a mixture of fun, social interaction, arts and crafts,  physical activity and special olympics) two days a week after school beginning in September.     He was so pleased that he said we could come back in 6 months, unless I felt we needed to come back before then, at which time I can call in for an appointment sooner than the one scheduled.  We discussed the medication and how to increase, if needed (we discuss this each time and I am glad we do, because he’s not all about medication, he’s about medication management and incorporating other things and is NOT anti-diet and anti-supplements) BUT I do have to watch what homopathic type items I use with Tyler for them not to interact with medication – this doctor is very good about discussing any ideas I may have (I told him I was looking into the oils have not made that decision) but still trying to maintain a restrictive diet. We discussed my issues with the medication (which don’t change – lol) that it SLOWS Tyler down and slows his metabolism down as well in turn causing weight gain.  BUT it does help with his anxiety and definitely helps with aggression. Everyone has off days, we are human, but for the most part it’s been a world of difference (last year 1st year in school with no major aggression behaviors) We both want to see how things go again once school starts (less snacking at the house).    So this summer has passed, therapies, doctors, and changes in place and we will move onto 6th grade on Monday!   One day, one prayer, one step at a time.  Thank you God for this journey.

Manimal update at the beginning of summer.

Independence is what we all strive for and in our AU kiddos and really in all kiddos to teach them to desire independence and seek it is just as important.  Breaking patterns now and then is a necessity.

In years of effort to get Tyler to eat, I adapted my kitchen, fridge, etc to accommodate him and made and… tweaked changes along the way.  Lunchtime around here is 11:30 – and basically Tyler has the same thing for lunch year round -lol – turkey roll-ups, fritos or tostitos, yogurt and lemonade water.  If I am working or busy at 11:30, I tell him to wait – last year, he would go and snack on something until I was able to make his lunch. I know he’s capable of making this particular lunch because he helps me do it on the weekends.  A couple of days this week, I put myself BUSY and out of the house (i.e. mowing the grass) at 11:30 to see what would happen – lo and behold he made his lunch and put away the items as well. NOW he didn’t eat it until he showed it too me, but he did make it!  After that each day, he would tell me, it’s 11:30 and I said, ok, what is 11:30, he says lunch, and I say – ok well go make your lunch, he walks into the kitchen and makes his lunch, he still prefers that I check it and is very pleased when I tell him how proud I am of him.  Like I said, he always has access to fruits, yogurts, chips, water, etc but for him to “make his lunch” is an totally different step and a step toward independence.  As a mom, I love “doing” things for my kiddos and making lunch is no biggie BUT as an AU mom, I know all about pattern setting and I know that I will not be around forever. Does this mean that he’s self-sufficient in this area right now, no. Does this mean that he would feed himself buffet style at someone’s house, no.  Is this a step towards progress, yes.  Does it mean some things we have to let go a little sooner than others, yes.

Next – in this effort to transition into the 6th grade (which is not going well at all -lol) I am trying to show and let him know that he’s getting older and growing up, so I have given him the opportunity to ride in the front seat instead of always having to crawl into the back (I also think he will enjoy riding with the top off more now – he used to love the wind blown feeling not so much now) in addition to him riding up front he also has to get out of the vehicle and open the gates for me to drive into the driveway and he does so with no problems. (It was rather comical the first couple of days of riding in the front as he discovered himself in the side mirror).  Now when we went to grocery store I did have to have him sit in the back to accommodate loading up the groceries and he did that with no resistence as well.  So he is learning to break the pattern of just 1 location in the vehicle.

Next – when we went to the grocery store Saturday morning, I knew I was gonna need 2 baskets, Tyler was NOT pleased about this at all – so I just ignored and planned on using 1 basket and and was not making happy faces – lol. I also told him that we may not be able to fit his gum and frozen yogurt in just the 1 basket. He was not pleased and very reluctantly got a second basket, for about the first 15 minutes, it was not fun, in fact he kept leaving the basket and walking away and then would go back and get it (one of many reasons we shop at 600a in an uncrowded store for lesson learning) finally things seemed to smooth over a little bit and he and I shopped with two baskets, him man-handling one and me the other.  We couldn’t reach a certain water items and we saw Michael Bryan. I asked if Michael could locate someone in this department, he offered to help. Tyler told Michael, “I can reach them” I asked Tyler to ask Michael “Will you please help us reach them” which Tyler did and which Michael did. When he retrieved all on the shelf, I asked Tyler to thank him. Which he did.  I need for Tyler to learn to recognize and ask for help when needed.  I even sent him down a couple of isles on his own (this time without me standing at the end watching) to pick up things and place in the basket.  I picked up boxes of cereal and he responded with “I do not want those” WOW – how awesome was that sentence and it took me a little bit of time to remind him that those cereals were not for him, that they were for the food table at church, had to remind him that Jesus wants us to help people and we have to help people that are hungry.  Oh and Blanca even though they were green – we did not walk out of the store without bananas – LOL – some patterns you just don’t mess with.  So it turned out to be a very good trip to the store and as usual I had come home and put up certain items (he has to put up the yogurt, the frozen yogurt, and the gum) sometimes I have him put up other items too but he had one quite a bit that morning, so I didn’t push it.

Yesterday after church we go by JIB – (I have dreaded and waited for this day to come) and they NO LONGER make Grilled Chicken Strips – YIKES- he was getting flustered as I pulled away and started screaming chicken,french fries, vanilla shake.  So I said we will find someplace, we were driving and he pointed at Whataburger the only problem is that they don’t make grilled chicken strips and the breading is very difficult to get off. We wound up at Carl’s Jr.  and they do not make grilled strips either, but their breading is easy to peel off (he wants the breading I don’t want him to have his vanilla shake is off dietary plans as is) he was able to calm down (Chick-Fil-A is closed on Sundays, which I respect, but that would be a great option). It was a couple hours of hearing about the whole ordeal about JIB not having chicken and fries – LOL –  This ordeal yesterday was not intentional like other items earlier in the week.

I am glad ESY started today but he is not. Of course this morning, he is experiencing leg pain, foot pain and wanting to see the doctor, I said my foot hurts too but I gotta work and you gotta go to school.   I told him he gets to see K, C and F, I didn’t mention Mr. Thompson because I was still unsure at that point.  He really thought we were going to Baker (6th grade) this transition is much harder than anticipated.  So we are in the driveway and he pointed towards Spencer and said you need to go that way (he was actually correct because ESY is not JRE) so we pull out and I get to Underwood, he starts having issues because I am not “turning left” he even touched my arm (which made the think maybe he’s not ready to ride in the front seat if he’s upset over something) I told him now, we have to go to RE.  As we passed Baker, he closed his eyes 😦 then at the light we turned right he says “there it is” and points to the school.   He wanted to know where everyone was because the buses were not there yet.  We get out and wait for the staff to come and I was so relieved to see his teacher (his 6th grade teacher) his teaching ESY!  Tyler even said, well hello Mr. Thompson. Tyler was pacing a lot, and looking down. I told Mr. Thompson, he was a little overwhelmed thinking we were going to Baker and then not going to LE, like last year’s ESY.   I was proud of him that even though he had a lot to process this morning, he seemed to handle it ok, we shall see how things are when he gets home (he normally breaks down at home).  I guess he really thought when school was over (elementary) that in his mind it was over forever – sorry Buddy – but no.

Proud of him!

It’s been 2 1/2 years now that I’ve been taking Tyler to speech and OT therapy in Clear Lake and seems like I am always incorporating or doing homework in these areas -well THIS year his teacher and I have picked up on what seems to be “communication” improvement with speech – YES Tyler talks but he’s very echolalic and has little ability for true …communication.  Lately he’s been “can you help me please” and when you ask with “what” he will respond.  He’s introducing himself (and his haircut) to everyone at the stores (a boy who would not speak to anyone) and tonight when they were painting pumpkins, he wanted to see Kristina’s pumpkin that she was working on and he actually asked her to “turn it around” VERY appropriate AND CORRECT!  See in speech therapy and with many AU kids – appropriate statements or answers are not always correct but this was – Speech therapy for Tyler is not just articulation, it’s also communication.  When we were in the store, we always buy a box of Ramen soups for the food table at church. i always tell him we need to “help people” then we were walking down Ramen isle and I was passing it up, because i had some canned goods this time – he stopped and took the Ramen from the shelf and said “help people” well there’s no way I could tell him to put that back. Then last night we were watching Live With Passion on the Church Channel and there was a commercial about water in other countries, etc. and he said “we need to help people”, I cried a little.   It’s so hard to truly know what is sinking in and what he actually knows. Pastor B keeps telling me, just keep it up, even if he (tyler) never  spoke a word, you (me) do not know what’s  he’s hearing, comprehending, learning and is in his heart.

NEVER GIVE UP HOPE – this this morning from a child who 6 years ago only said 5 words –
Tyler – “Can you help me?”  Me – “What do you need buddy?” Tyler – “Can you help me with my sock please?” Me – “sure thing” i adjust and help with the sock – Me “there ya go”  Tyler – “Thank you”  Me “your welcome”   (this was full interaction, appropriate and comprehensive thank you Lord for this blessed moment!)

Many know over the past year and half  I was battling and working intently on behavior issues with my Manimal. I am not pleased that I had to begin medications but I am very pleased with some of the results. I am not pleased with the weight gain and how much my Manimal’s energy level has slowed down BUT with that said, it ha…s no doubt helped his anxiety levels and has helped calm him down in order to tolerate things a little better and be able work on levels of emotions, etc.  It’s been a year now since our first visit to the psychiatrist and we’ve had 2 visits to the behavorial psychologist and we are now in behavior therapy (in addition to the OT and speech therapy).  He’s been through 3 medications all together, finding the 3rd one has been a good one for him. I still try to maintain a gf/cf yeast free, hfcs free, caffiene free and processed sugar free diet (TRY being the key word) and he still takes daily his multi-vitamin, omega 3’s, calcium, immune boosters and probiotics.

Fast forward to today.  This school year has been awesome! (Hoping I am not speaking out too soon) EVERY DAY has been a great day!   He’s been (with paras of course) going to some mainstream classes and even PE (BIG BIG BIG accomplishment) Science appears to be his favorite and has been known to stay in science class longer than the IEP time of at least 20 minutes, a couple of those times been in there up to an hour!  WTG Manimal!

Speech therapy has been intense and OT therapy as well and we are constantly adding new goals when one is achieved.  COGNITIVE THINKING SKILLS ARE STILL NOT UP TO PAR – but never give up HOPE and never stop trying. What I see today is amazing from a boy who 5 years ago only spoke about 5 words, wasn’t potty-trained and seldom ate and list goes on and on.  Behavior therapy is going well too. Really liking the therapist. She even brought in some Thomas the Trains and Track to work with Manimal during therapy, incorporating the number scale on various levels of emotions leading to anger.  She did a couple of months of evaluating and getting ideas of where he’s at, cognitive understanding, etc.  Now he goes in the therapy and I wait outside and then go in for a portion of the time.

I’ve started placing some responsibilities on him and he looks at them as his “job” which they are.  I sit the trash outside the door and he takes it to the end of the street.  In the mornings, I make his lunch and his breakfast, BUT for his lunch, it’s his responsibility to put in his napkin and close the lunch box.  For his breakfast, it’s his responsibility to put it into the baggie, into the brown paper bag and get his napkin. He’s too put both of these and his reading folder into his backpack. It’s his responsibility to tell me what time it is and when we need to leave.  He does these things MOST mornings without a problem. There are still many things he won’t do (without a struggle), teeth brushing, face washing, hair combing and deodorant are a struggle even with visuals -lol, clothing never makes it to the laundry basket, shoes never make it out of the living room, and trains and track NEVER get put away – lol but one battle at a time.  The OT therapist and I have been discussing new goals when he masters the ones we are currently working on.

He doesn’t always get “it” in situations outside of a theraputic atmosphere but he has started expressing his words of anger instead of always acting out.  He’s learned to somewhat hold back tears in overload or worried situations (the bus was late picking him up from school the other day, he was about to lose it, but waited until he got home before breaking down).  He has been able to show how he feels on the scale at times, it is slow process even getting to this point, but it’s been worth it.   I just want to help him have more “good days” than “not so good days” in his life.   Frustration, anger, meltdowns, anxiety overload can be hard on anyone but someone who doesn’t really know how to communicate it can be very hard.

All in all very proud of his accomplishments over the last year and ½ almost 2 years and this school year is going great (so far).  Progress is just that progress.  I learn not to be frustrated at the mishaps, the set backs nor the unaccomplished goals because in the bigger spectrum of thing the progress to date has already exceeded my expectations and that of what I was told to POSSIBLY expect.  When something isn’t progressing, I break from that, focus on something else, and return to that goal at a later time.  One day, one goal, one inspiration, one step, one smile, lots of hugs, many obstacles, set backs, good days and bad days and lots of time on bended knees make it all worth while.