Oh my head is about to explode tonight! Yesterday and today have been AWFUL to say the least with Sam at home, during ABA therapy and at the pediatrician's office today. I've been banging my head trying to figure out what's going on (probably why my head hurts)! Everyone hears and sees the excellent progress he's made this year. His vocabulary has EXPLODED! He's talking in full sentences, has excellent imaginary play, great social interaction with peers, wonderful eye contact, using the potty before bath every night and is finally sleeping through the nights for almost two weeks. So what's the problem you're thinking? It's what most do not see or hear the whole story about. With progression always comes regression and lots of it for Sam! The last few weeks he's very clingy and attached to mommy again. During home therapy, private speech, even when Nana is visiting or the sitter is coming all we hear is "don't leave me. Stay with me. I want to see mama" and so on. Steve and I did do an overnight away 2 weeks ago but I think this started before that night. Maybe it's from some major changes this summer. His summer school teachers are all new as well as a new bus driver. He seemed to adjust well to these changes. But we had to get a summer sitter to get him of the bus the 4 days he has school and to be with him sometimes on the 5th day until Mommy gets home from work. He seemed fine with this as well. We had one sitter for a month but she broke her foot and it got worse so this Monday we had another sitter take over. He's met her three times prior to this Monday. I told him the previous sitter couldn't come back and this other one was starting. He said he didn't want us to leave him and we shouldn't go to work. He seemed to get over this quickly and has had a good time with her so far this week. No problems. Come yesterday during ABA and he doesn't want to do any work for the therapist. This happened a little last week too but worse yesterday. He wouldn't sit down at the table and wanted me to be with him. After numerous "talks" I gave him a warning that if he didn't sit down in 2 minutes I would be going upstairs and closing the gate on the stairs behind me. We set the timer. 2 minutes came and he did not listen. I made my way to the stairs and he was not happy! I had the therapist help me close the gate and upstairs I went. He carried on, crying, screaming and yelling to open the gate. 20+ mins went by and I thought I heard his voice getting closer to me. Then I heard a door close upstairs. He got upstairs! During his rage of anger he pulled two wooden bars out of the gate at the bottom of the stairs. He came up the stairs and squeezed through the railing on the stairs which I can't believe he fit through! I was livid! I was so mad but couldn't even yell at him! I think I was in shock, disbelief, a mixture of feelings! How can my sweet and affectionate boy go from laughing and having fun one minute to a state of confusion where he can't communicate, doesn't know what he wants and only gets worse the more you talk to him or ask him questions? This is autism for you in it's finest! Right now I'm not a fan of autism! As another autism mom has recently said 'autism is like a roller coaster ride'. It sure is and this Momma does not like roller coasters. (to read this awesome mom's blog please visit http://anautisticmind.blogspot.com). I'm trying hard not to get down about it but truth is we have a long way to go with this thing!
It took me two hours to calm myself down last night from how much frustration I was feeling! He must be punished I thought! He can't go around breaking things when he's mad and angry! But punishment? I don't think he even understands that what he did was wrong. I told him how mad I was, that we don't break things when we are mad and what he did on the stairs was very dangerous...etc. he apologized and kept saying he wanted me because he was upset. Ok so we need to figure out a way to discipline and will be having a good talk with the ABA supervisor tomorrow.
Now today he had a 4 month follow up with his pediatrician who likes to see his patients with autism more often than just once a year. He was ok at first there. Next he wouldn't take his shoes off to get weighed or measured, hid under the examining room table when the nurse tried to take his blood pressure, kept trying to grab the stethoscope and other equipment that was left in the hallway, started yelling when I moved said items away, wouldn't stay in the room while we waited for the doctor and was carrying on more. We walked around the office until the good doctor was ready for us. Sam was happy to see the doc, got right up on the table for him but this only lasted for a few mins. Again began the behavior of wanting me to stand up, wanting me to hold him, pulling my arm, trying to block my face while I talked to the doctor. Sam opened the door of the room we were in but would start screaming again so the doc closed the door and told him of he screamed we had to close the door. We could leave it open if he had a calm voice. Few minutes went by and more screaming! Ahhhh! I updated the doctor with everything including his sleep, potty training, therapies and how hungry he's been. In the last 4 months he's gained 5 lbs! Today he was 45 lbs and 42 inches which I swear he was 42 inches back at his 4 year appt. We talked about how to decrease his Neocate splash and that he can have 3 (8 ox boxes) a day with water added in the cups. The doc said Sam has finally realized how good food is and that it doesn't make him sick anymore so that's partly why he is asking for more food and looking for it. He never did this before because he would always vomit and it took him a while to trust and like food. This made me sad to think about but it makes sense. We concluded our visit but not without more behavior. Will be going back in 4 mths for another follow-up. He's never had us come back 2 in a year like this. I'm glad he's being thorough and concerned but it also makes me more nervous for what he is watching for. After we left I told Sam we were not going to the playground and I stuck with it! He was not happy in the car. Wanted MORE MILK and the iPad! I could not reach the iPad while driving. He told me to pull over and stop for which I ignored him. For the next 2 miles home I heard repeatedly "stop. Stop. Stop. Stop. Stop". More autism! Ahhh! Mommy is ready for a meltdown! And more behaviors during therapy today!
Tomorrow is the last day of summer school session which I also wonder if that's even done him any good. Not crazy about the summer program at all! Thinking next year we will be doing a special needs camp!
Pheww...I think that's it! Thank you for reading, listening and learning more about autism. Please educate others and remember if you see a child upset when out and about in the community that the child may not be a brat but may be dealing with ugly autism! I've gotten quite the looks recently at a store and even at the pediatrician's office.
Wednesday, August 15, 2012
Friday, March 30, 2012
updates
My baby is 4!!! How is that possible?! ha!!!! I think back to last year at this time and how far he has come!!! 1 year ago he was ending 1/2 mornings at daycare, early intervention and home ABA. He started preschool on 3/30. The first few days of dropoff were bad. He had to be carried off crying and screaming. If I recall correctly he did settle down within 20-30 minutes. But for the first few months of school he was having a BIG meltdown of up to 45 mins-1 hour EVERY SINGLE DAY! The same was going on at home. He still only had a few words and we had to use visual pictures and a schedule for everything. It was a very tough time. He would only warm up to the main teacher and would get scared of anyone new coming into the class. He did not interact with the other kids. He hated art time and touching different textures during OT group. We couldn't just leave him with a babysitter to go out for a little break. We couldn't just take him anywhere to play or to someone's house he hadn't been to before. He would have a big meltdown. And these are not "just tantrums"!
1 year later we can leave him with a sitter and he's a happy boy!! He LOVES going to school and takes the mini bus back and forth daily. He rarely has a meltdown at school and if he does it only last minutes (though the past few weeks he did regress due to lack of sleep at night). He is VERY affectionate, gives hugs and kisses, says hello to strangers, hugs new people, is a social butterfly at school, is talking up a storm! We've lost count of how many words he has now!!! He still has a way to go with transitions and trying new things. Recently loud noises have bothered him more than previously. We were only able to stay at a school event for 15 minutes last week once it became very loud and crowded. He stopped what he was doing, covered his ears, said "it's too loud, I go home". But a year ago he wouldn't have been able to say that and he would have had a huge meltdown. He did great at his birthday party but did say it was too loud when we sang to him. He gets very excited in social situations and doesn't keep still for long.
Taking him for a haircut is TORTURE for him, us and anyone at the salon. So that's why his hair is a bit shaggy right now and yes I know it needs a good cleanup!!! Would you like to take him for us and hold him down or cut it at home? Last time we took him it took 4 people to hold him down.
He is also not potty trained yet or even close to it. Yes I would love to have him out of diapers but it's not that easy with a child like Sam. He won't even sit for more than a few seconds on the potty. We have to work with his school teacher and therapist to come up with the best plan that will work for him. And you know what? I'm fine with this! I know know how far he's come and he's doing well in so many areas! He's talking and communicating, he knows the ABCs, counts to 30, knows all the colors, shapes and is spelling words! He cares about others when they are hurt. These are all HUGE for a child like Sam!!!! A year ago we didn't know what the future would hold for Sam! So I say who cares if he's still wearing diapers?! One day he will be ready to use the potty and wear all the undies that Mommy has bought already!!!
1 year later we can leave him with a sitter and he's a happy boy!! He LOVES going to school and takes the mini bus back and forth daily. He rarely has a meltdown at school and if he does it only last minutes (though the past few weeks he did regress due to lack of sleep at night). He is VERY affectionate, gives hugs and kisses, says hello to strangers, hugs new people, is a social butterfly at school, is talking up a storm! We've lost count of how many words he has now!!! He still has a way to go with transitions and trying new things. Recently loud noises have bothered him more than previously. We were only able to stay at a school event for 15 minutes last week once it became very loud and crowded. He stopped what he was doing, covered his ears, said "it's too loud, I go home". But a year ago he wouldn't have been able to say that and he would have had a huge meltdown. He did great at his birthday party but did say it was too loud when we sang to him. He gets very excited in social situations and doesn't keep still for long.
Taking him for a haircut is TORTURE for him, us and anyone at the salon. So that's why his hair is a bit shaggy right now and yes I know it needs a good cleanup!!! Would you like to take him for us and hold him down or cut it at home? Last time we took him it took 4 people to hold him down.
He is also not potty trained yet or even close to it. Yes I would love to have him out of diapers but it's not that easy with a child like Sam. He won't even sit for more than a few seconds on the potty. We have to work with his school teacher and therapist to come up with the best plan that will work for him. And you know what? I'm fine with this! I know know how far he's come and he's doing well in so many areas! He's talking and communicating, he knows the ABCs, counts to 30, knows all the colors, shapes and is spelling words! He cares about others when they are hurt. These are all HUGE for a child like Sam!!!! A year ago we didn't know what the future would hold for Sam! So I say who cares if he's still wearing diapers?! One day he will be ready to use the potty and wear all the undies that Mommy has bought already!!!
Saturday, January 21, 2012
It's just not fair!
My heart is aching and I'm full of tears thinking about 2 little boys this morning!
It doesn't make any sense that a Mom can say goodbye to her 2 year old son and husband on the very same day. 1 life taken much too soon and a life long friend, soul mate, true love and provider to their family...gone just like that without any warning or goodbye. No last touch. No smiles. No hugs or kisses. No whispered words or laughter from the child. This really bothers me and saddens me to even think about. I keep thinking about the mother and her 2 remaining children. How are they doing? Do they understand their baby brother and daddy are not coming back? The mom has to be an emotional mess. Makes me sick to even imagine my life ripped apart and 2 very special people taken away immediately from a fatal car accident. I used to work with this mom and feel the urge to reach out to her now. We still work at the same company but I am at a different location now and lost touch after having my own child and my Dept was cut back in 08.
Some of you may remember a little boy named Johnnie who is the same age as my Sam.
Johnnie also has EE (Eosinophillic esophagitis). Unfortunately Johnnie's little body has not responded to any treatments and he continues to deteriorate. He now has the best care in Cincinnati but there has to be some undiagnosed condition that continues to cause him distress. His mom just posted an update on Facebook and I'm sitting here in tears. Why does this almost 4 year old boy have to suffer so much? Why must any child suffer, be poked and pried and undergo too many biopsies, be put under anesthesia time and time again? It's not fair! There has to be a reason and a better outcome for this child, for every child that suffers and cannot live a happy and healthy life like a normal 4 year old should.
Hug your children. Embrace them. Love them and care for them as if you never know when things may change. And now I will put down this iPad to spend time with my sweet love who is craving my attention. For me, he is priceless, my love and joy!
It doesn't make any sense that a Mom can say goodbye to her 2 year old son and husband on the very same day. 1 life taken much too soon and a life long friend, soul mate, true love and provider to their family...gone just like that without any warning or goodbye. No last touch. No smiles. No hugs or kisses. No whispered words or laughter from the child. This really bothers me and saddens me to even think about. I keep thinking about the mother and her 2 remaining children. How are they doing? Do they understand their baby brother and daddy are not coming back? The mom has to be an emotional mess. Makes me sick to even imagine my life ripped apart and 2 very special people taken away immediately from a fatal car accident. I used to work with this mom and feel the urge to reach out to her now. We still work at the same company but I am at a different location now and lost touch after having my own child and my Dept was cut back in 08.
Some of you may remember a little boy named Johnnie who is the same age as my Sam.
Johnnie also has EE (Eosinophillic esophagitis). Unfortunately Johnnie's little body has not responded to any treatments and he continues to deteriorate. He now has the best care in Cincinnati but there has to be some undiagnosed condition that continues to cause him distress. His mom just posted an update on Facebook and I'm sitting here in tears. Why does this almost 4 year old boy have to suffer so much? Why must any child suffer, be poked and pried and undergo too many biopsies, be put under anesthesia time and time again? It's not fair! There has to be a reason and a better outcome for this child, for every child that suffers and cannot live a happy and healthy life like a normal 4 year old should.
Hug your children. Embrace them. Love them and care for them as if you never know when things may change. And now I will put down this iPad to spend time with my sweet love who is craving my attention. For me, he is priceless, my love and joy!
Thursday, January 19, 2012
The Schedule
Our neighbors must wonder who is coming and going at our house M-Th afternoons. Maybe you wonder what I do with 'all my time' every afternoon. No I'm not sitting and eating bon-bons or watching soap operas. haha! We are pretty busy every M-Th. This is Sam's home therapy schedule after he goes to school from 9-2 every day.
Some may think that 5 hours of school every day PLUS home therapy is a lot but it's not really. I don't think there's such a thing as 'too much' therapy during these early ages. And he's not working hard all the time. He has LOTS of fun and learns so much every day! He loves it and is such a hard worker! As for me, I'm very involved in his therapy. I sit outside of the room of speech to listen. I could sit in the reception room but then wouldn't hear him and this is where I learn ALOT!!! During home therapy I stay in the sessions too most of the time. I could be doing laundry or scrapbooking but I like to see what he's doing and also learn from the therapists. So we don't have much downtime here. But this ok! It's a good thing we have going on! And I will take all the help we can get now because that can always change with insurance coverage. The more "help" we get now the more likely services will be approved down the road or maybe he won't need them at all. The long term goal is to have him in mainstream classes in school with little or no therapy but only time will tell what his needs will be. The future for Sam is bright and very promising! This we know for sure!
- M- 4-6 ABA therapy
- T- 3:30-6:30 ABA therapy
- W- 3:15-4 private speech
- 4:30-6:30 ABA therapy with 2 therapists overlapping
- Th- 2-3 every other week. School ABA home visit
- 4-6 ABA therapy
- Fr- NO visitors so don't come knocking because we won't answer! :-)
Some may think that 5 hours of school every day PLUS home therapy is a lot but it's not really. I don't think there's such a thing as 'too much' therapy during these early ages. And he's not working hard all the time. He has LOTS of fun and learns so much every day! He loves it and is such a hard worker! As for me, I'm very involved in his therapy. I sit outside of the room of speech to listen. I could sit in the reception room but then wouldn't hear him and this is where I learn ALOT!!! During home therapy I stay in the sessions too most of the time. I could be doing laundry or scrapbooking but I like to see what he's doing and also learn from the therapists. So we don't have much downtime here. But this ok! It's a good thing we have going on! And I will take all the help we can get now because that can always change with insurance coverage. The more "help" we get now the more likely services will be approved down the road or maybe he won't need them at all. The long term goal is to have him in mainstream classes in school with little or no therapy but only time will tell what his needs will be. The future for Sam is bright and very promising! This we know for sure!
Word World
Sam's current favorite shows are Word World and Super Why! Goes well with his language EXPLOSION! I need to start jotting down new thing he says every day! Yesterday during home ABA therapy he left the living room where the 2 therapists were to come see me in the dining room. When he went back to see them he said 'I'm back'! We were laughing! He's now saying final consonants. Some examples of recent words are; pop, cat, book, up, stop, I get milk (used to call it 'ga'), puppy, cracker, cookie, 'scuse' me for excuse me when he burps, I toot or poop, downstairs, upstairs, horse, dog, duck, pull me, train, bus, spoon, fork, eat, cup, bed, go sleep, I cold or scared, sad, happy, mama's daycare, want, yeah, , here you go, yes...geesh I'm sure there are so many more! He can put words together like Dada go to store to get mama soup. But mostly uses 1-3 words together at a time plus still a lot of jargon. He LOVES doing anything with ABCs and words on the iPad, tv, books and puzzles and of course still loves his beloved trains! He loves school, private speech and his ome therapy. He has 10 hours of ABA therapy over M-Th (applied behavioral anaysis for autism) at home. He's doing so well with the home therapy that I wonder if the 10 hours is too much. The lead therapist has to keep updating his programs. They are going to help us with potty training which we tried last weekend and he clearly wasn't ready. He will be 4 on March 29th. Where does the time go?
Sam has the funniest sense of humor and the best timing for things. Trying to think of examples...He will call me Dada on purpose and I will call him Chloe (our cat). I will call him something like puppy or silly and he will say 'no I'm Sam'! Lol!
He can spell Samuel and count up to 30. He says the ABCs all the time and yesterday clearly said S and W (all 3 syllables). We are now teaching him his last name and age and then will move onto address and phone #.
He tells us when he's sad or scared. Yesterday when he came home from school I asked him what he did and he said 'E'. I opened his school bag and there was a letter puppet E! Monday he was home with Steve and I had to work. I came home and asked him what they did. He said 'go to store' (just 1 thing they did). I can't believe he is starting to tell me things that he does when I'm not with him! A few days ago he asked for crackers but we didnt have any of his left. He said 'I go to store to get crackers'. So smart!
He will tell us if he's cold but will not wear socks once he's shoes are off. He will not use any blankets or pillows in his bed but will use them in ours. He actually slept 2x in our bed this past week when he woke up sick during the night. I still can't believe he kept still! He would never stay still and lay down to cuddle with us a few months ago! And now he gives kisses all the time! Love it! Teaching I'm how to say love! So far we get 'uv'. I will take whatever we get!
Sam has the funniest sense of humor and the best timing for things. Trying to think of examples...He will call me Dada on purpose and I will call him Chloe (our cat). I will call him something like puppy or silly and he will say 'no I'm Sam'! Lol!
He can spell Samuel and count up to 30. He says the ABCs all the time and yesterday clearly said S and W (all 3 syllables). We are now teaching him his last name and age and then will move onto address and phone #.
He tells us when he's sad or scared. Yesterday when he came home from school I asked him what he did and he said 'E'. I opened his school bag and there was a letter puppet E! Monday he was home with Steve and I had to work. I came home and asked him what they did. He said 'go to store' (just 1 thing they did). I can't believe he is starting to tell me things that he does when I'm not with him! A few days ago he asked for crackers but we didnt have any of his left. He said 'I go to store to get crackers'. So smart!
He will tell us if he's cold but will not wear socks once he's shoes are off. He will not use any blankets or pillows in his bed but will use them in ours. He actually slept 2x in our bed this past week when he woke up sick during the night. I still can't believe he kept still! He would never stay still and lay down to cuddle with us a few months ago! And now he gives kisses all the time! Love it! Teaching I'm how to say love! So far we get 'uv'. I will take whatever we get!
Wednesday, January 11, 2012
Open up and say Ahhhh!
Or WAHHHHH in our case at monthly acclimation dental visits for Sam. We go to Pediatric Dental Center of Mansfield and LOVE them! The problem is when you have a child who HATES going to doctor apps and cannot sit still for long! He gags when brushing his teeth and we worry that he may have cavities from years of acids reflux + all the vomiting and formula he still drinks! Well this visit went better but we still have a long way to go. He did well for the hygienist and after mommy pretended to demonstrate everything first; brush teeth, count teeth and look at teeth with their 'mirror tool'. He finally let the hygienist do the same. Dr. Bob came in and had Sam look in his mouth too. Lol! See pics below. Sam wasn't happy to do the same requests again for Dr. Bob and let out some BIG screams! Sigh! he said he has NO major decay on his teeth, just some staining. (One day he'll get a good cleaning). We were finally done and Sam got a new train which I had promised him (was leftover from Hannukah as he got too many). We'll be back on 2/7.
Sunday, January 1, 2012
AND I'm so HAPPY to have found a job that gives me a nice paycheck, insurance PLUS the schedule to be here for Sam after school. Steve has a GREAT job and we are setting goals for US in the new year. Looking forward to more GOOD changes and planning our next steps for the future!!! Here's to 2012!!!
12/31/11
12/30/11
Subscribe to:
Posts (Atom)