Thursday, July 5, 2012
Well hello there!
A few new things...
First of all, Devyn has been making some great progress! He is on summer break right now. But before he went on break we had another IEP. His teacher and ot/st suggested he move to the mild/mod class instead of being in the mod/severe class. My husband and I agreed because he is making great progress and we felt he was ready to move to the next class. I just wanted to make sure he would keep his services. All services stayed on the same so that was great! He starts when school starts back up again (end of july..He is also talking a lot more - conversation wise! Which is great!!! That is something he really struggles with. There has been a bit of regression because he is on break but hopefully when he goes back to school everything will go back to normal.
His OT was cut at the clinic we go to. Which kind makes me a little annoyed..His therapist believes he does not need it anymore. She says he is making too much progress. I agree he is making progress BUT he does a lot of things with his therapist that he will not do with us. We are constantly trying though..hopefully he will break away from this habit soon. I just wish she wouldnt of cut his OT so soon just when he started making good progress. I dont quite understand that.
I'm going to try to go through RC again for aba services for Devyn..I really hope I dont get the run around again. I tried before and our service coordinator was just SO rude about it. Pretty much told me it wasnt worth it. Insurance will be a no go because my sons insurance is excluded from the new law...So, we will see how this goes. :/
Otherwise, just doing our usual thing. Therapy and activities/events. Although, I'm thinking of taking it slow on the activities. We have been doing way too much lately and it is pretty exhausting..
I made another team for the Autism Speaks walk this year. This year it will be in Irvine! Right down the street from us and it will be in October. Hoping more people join and/or donate! Gotta start getting the word out about it..
Autumn has also been doing great! Talking up a storm..having little conversations with her brother! SO CUTE! Although, I think the terrible two's are in full swing because she is becoming a moody monster!!!! Hahaha..typical girl I guess haha. Had some not so pleasant visits with For OC Kids about her though...which just makes me angry so I wont go too much into that. All I know is that she is doing GREAT! Everyone thinks so too which is all that matters to me.
Other than that...I have started my own little journey! I am trying to lose some weight. It has been 5 weeks and I've already lost 11 lbs. Hoping to lose a lot more. Trying to lose at least 50 lbs by December! I think I can do it :)
I have been feeling gloomy lately though...I try to put the family subject in the back of my mind but lately I find myself thinking more about it. I really wish I had parents and the kids had grandparents. I just don't know why my parents and my husbands wouldn't choose to love our kids. They are beautiful and they are worth being loved..they are worth getting to know. Why wouldn't they want to know them?
BLAH. So much to say about this subject...I just wish things were different.
BUTTT whatever with that!
Things are looking up for us though!!! :)
Sunday, May 6, 2012
Thankful for autism.
There are quite a few days where I have one of those I hate autism moments. As do a lot of other autism parents. But, last night I encountered something that really made me think. I went to Target last night and there was this lady who checked out a few people in front of me. Her child was sitting in the cart crying and screaming. I just knew her child had autism. Unlike the other people in line, I wasn't staring at her. I wasn't giving her and her child dirty looks. I understood. I felt compassion for her. I wish I would have said something to her. I've never been in a situation like that. I've never been somewhere (other than therapy and events) where there was somebody like me and could relate. I really wish I would have said something.
But it really made me think. I am very THANKFUL that my son has autism. Autism has shown me compassion, acceptance and patience. Before I had kids I just worried about myself. I was never aware of what SN parents and kids go through. I didn't really think about it because it didn't affect me personally. But, I would never be rude like the people I encounter daily. I was bullied as a child and know how it feels to be put down frequently. I feel for these parents and children.
I just wish more people thought this way. I wish more people were accepting and patient. I don't expect everyone to understand and get it. I know a lot of people dont understand this road unless they have been down it. BUT, that isn't an excuse to be ignorant and judgmental and downright cruel.
So, please, just take this into consideration...
Next time you go to the store, to the park, or somewhere to eat, or an amusement park, or anywhere really...and you see a child having a difficult time PLEASE THINK FOR A MINUTE. Please think before you say something or give a dirty look. Please think. Maybe you are looking at a mother or father that has had a hard long day of therapy and dr appts..a parent who is exhausted beyond belief. Maybe, just maybe, you are looking at a child that is having a sensory overload and maybe a little loud because of it.
People need to be more compassionate. More accepting.
My son has autism and I am proud of him. He loves EVERYBODY! He is so friendly to everyone and thinks everyone is his friend. But, the sad reality is, is that there are people out there who just sit there and judge him. Really makes me sad. Sad for the people who are doing the judging. It must take a lot of self hatred to put down a young child. Society really makes me sick sometimes.
Monday, April 2, 2012
Today is World Autism Awareness day! and not to mention Autism Awareness Month!
1 in 88 children are diagnosed with autism. Please educate yourself! Autism is not a tragedy, ignorance is! There is a lot involving autism that people should be aware of: symptoms, early intervention & services, all the help and support that is out there for families and of course acceptance. I love my little D! He has autism but it definitely does not define him! Even though people are constantly judging him, he LOVES everybody. He deserves the same respect as everybody else. ♥♥
Dear Devyn,
I love you with my whole heart. I am so proud to say that you are my son. You are so very smart, funny, kind, loveable, silly and the list goes on! Not to mention you are tough as nails! You have been through so much in your 4 years. But, you got through it and you keep amazing us every single day with all your accomplishments and new things you learn. I love that you love EVERYBODY. I love that you have such a kind loving soul. You are so happy all the time and that is what truly makes me happy...to see your sweet little smile and to know that you are MY son and I created such a sweet and loving human being. Just because you have autism doesn't mean you are limited in any way..I truly believe you can do anything you want to do. You have progressed so much in such a short time and it is truly wonderful to watch and be apart of. This journey hasn't been easy but we have come so far and I know good things are in store for you my precious little boy! Mommy loves you. <3
Love,
Mommy
Thursday, March 8, 2012
Happy Birthday baby girl!!
Baby girl turned 2 today! Time really does go by fast. I know everybody says that. But it is really true. I remember when I had her. She was so tiny and I was crazy happy to have my baby girl. She is such a little sweetheart. So independent and has her own crazy bossy personality! She is also progressing! Talking more and more each day. She is so extremely smart! She can name quite a few body parts, she is saying more and more 2-3 phrases every day, getting really good at puzzles, follows directions, great at pretend play..the list goes on! Oh my, is she a little cuddler! I love my mommy and daughter cuddle time!! She is definitely my independent little lady. I just cant wait to experience all the things mothers and daughters are supposed to experience together that I never got to. It makes me so happy to think about. I love my sweet baby girl!!!
Autumn and I ended up going to the baby beach in Dana Point with a friend and her pal Justin! AUTUMN LOVED IT!!! She ran out onto the sand and was running back and forth in the water. It was kind of chilly but she didn't want to stop! We definitely have to go back there. It is super nice!
My pretty little lady!
Running through the water with her buddy Justin!!
Mommy and baby girl!After the beach we drove down to downtown San Juan Capistrano and ate at Ruby's! I really like it over there. It reminds me of SLO!
Silly girl!!!After that we came home and waited for daddy to get home! Then we got some dinner at Wahoo's (Autumn loves her rice and beans), walked around the spectrum a little bit then came home to have present time and cupcake time! :)
PRESENT TIME!!!! She loved her musical puzzle and snow white barbie doll!!
Oh, just hangin with snow white and daddy!
Cupcake time!!!
I love my sweet little lady! She is getting so big! These past few days have been busy busy with birthdays but I am so grateful to have these two in my life. I love them more than anything in this world. They make me who I am and for that I am so grateful. I am so proud to be their mommy! <3
Wednesday, March 7, 2012
Happy Birthday baby boy!
Okay, so I had made a post with a whole bunch of pictures and it got screwed up. So here it goes...Less pictures though. Apparently, I cant position them on my blog correctly ha. I will just make two separate B-Day posts! :)
Oh my sweet baby boy! You are 4 years old today! He is such a big boy now. He has gone through a lot in his 4 years. More than kids his age go through. He is such a special kid. He amazes us daily with the things he learns, does, and says. He is making great progress and is such a little hard worker. I wouldn't change him or anything we have been through for anything. (Well, minus all this recent testing. I love him with all my heart and cant wait to see the person he will become later on in life. He truly is the sweetest little boy ever. The thing about Devyn is...he doesn't judge. He loves everyone. He is friendly towards everyone. He wants to play and interact with everyone. It truly is amazing when you think about it. There are so many people in the world that judge him. Yet, he loves everyone. I love my sweet little duder!
Our day... First, I made a special breakfast for Devyn and Autumn.
Yes, I am aware that this entirely too much food for a toddler. Haha..I just couldnt help myself. But, truth be told, if he did in fact eat it all I wouldnt complain! Because he is as picky as can be! Of course he did not though. He didnt eat much of it at all. It is the thought that counts right? I may or may have not eaten the remainder of it. hahaha..Haha We hung out in the morning through early afternoon. Ate lunch then did our therapy routine. After therapy we picked up my husband from work then came home. Our friends came over with their daughter (who is his best friend). They played all night. We made dinner, had cupcakes and Devyn opened an awesome gift we got him! He had such a great birthday. You could really tell. When I think back to a year ago he couldn't even handle the "Happy Birthday" song being sung. But, last night I truly think he was really starting to understand what a birthday is. His face lit up when we sang happy birthday and he was just oh so happy to be celebrating his birthday with his best friend!
Chloe & Devyn!!
..and people say that ASD kiddos aren't social and are not affectionate!!!! Such a wrong and ignorant remark!
CUPCAKES!
He sure does love his mommy! :)
He absolutely loved his present we got him!!
Playing with Chloe and Autumn and there is Jamie (Chloe's mom in the background)
Overall, it was a great and successful day!!!!
Oh my sweet baby boy! You are 4 years old today! He is such a big boy now. He has gone through a lot in his 4 years. More than kids his age go through. He is such a special kid. He amazes us daily with the things he learns, does, and says. He is making great progress and is such a little hard worker. I wouldn't change him or anything we have been through for anything. (Well, minus all this recent testing. I love him with all my heart and cant wait to see the person he will become later on in life. He truly is the sweetest little boy ever. The thing about Devyn is...he doesn't judge. He loves everyone. He is friendly towards everyone. He wants to play and interact with everyone. It truly is amazing when you think about it. There are so many people in the world that judge him. Yet, he loves everyone. I love my sweet little duder!
Our day... First, I made a special breakfast for Devyn and Autumn.
Yes, I am aware that this entirely too much food for a toddler. Haha..I just couldnt help myself. But, truth be told, if he did in fact eat it all I wouldnt complain! Because he is as picky as can be! Of course he did not though. He didnt eat much of it at all. It is the thought that counts right? I may or may have not eaten the remainder of it. hahaha..Haha We hung out in the morning through early afternoon. Ate lunch then did our therapy routine. After therapy we picked up my husband from work then came home. Our friends came over with their daughter (who is his best friend). They played all night. We made dinner, had cupcakes and Devyn opened an awesome gift we got him! He had such a great birthday. You could really tell. When I think back to a year ago he couldn't even handle the "Happy Birthday" song being sung. But, last night I truly think he was really starting to understand what a birthday is. His face lit up when we sang happy birthday and he was just oh so happy to be celebrating his birthday with his best friend!
Chloe & Devyn!!
..and people say that ASD kiddos aren't social and are not affectionate!!!! Such a wrong and ignorant remark!
CUPCAKES!
He sure does love his mommy! :)
He absolutely loved his present we got him!!
Playing with Chloe and Autumn and there is Jamie (Chloe's mom in the background)
Overall, it was a great and successful day!!!!
Sunday, February 19, 2012
Tuesday, February 7, 2012
Talking talking talking..
Why hello! Life seems to be non-stop busy and there arent enough hours in the day to do everything.
Let's see..what is new..Well, we have been doing the usual activities plus more! I'm getting more time with Autumn by myself. I take Autumn to this place called Jumpin' n Jammin. It is in Mission Viejo. We go every Tuesday morning with my friend and her young son. Autumn LOVES IT! It has a rock wall, bounce house, toddler area, games, obstacle courses, etc. It is made for adults too so I am able to go in the obstacle courses with her and such. I have a bunch of pictures. I will have to update this post later with pictures. But, she is talking A LOT more! We have really been focusing on body parts and names of objects. She can say and point to her eyes, nose, mouth, head, feet, tummy and ears. She has a hard time with ears sometimes but almost there! She is saying two-three word phrases. Still says no to everything but is starting to incorporate yes into her vocabulary haha..She is OFF the paci! WOO HOO. That was hard..and still is! Since she cant have that to soothe her she has become a little butt head! Such an attitude she has...haha. Probably the terrible two's kicking in too!
Devyn has also been talking A LOT!!!! It doesnt surprise but but does in a way. For the longest time I just hoped for the day to have a conversation with him. That is what I really want to hear. Not all the way there but close. He answers questions with more than yes and no now and I think he is really starting to get the difference between the two. His sentences are getting longer and longer now. He is getting really used to our routines and knows what is coming next. He is still having struggles with food and the variety of food he eats but he is getting a little better with it. I've been trying to think of new things to put in his lunch. Because they have been working on cheese and pepperonis/salami in therapy I got some thinly sliced cheese and cut up some salami put it in a tortilla and rolled it up. He ate practically all of it in therapy! So, I put one in his lunch today. I really hope he tried it. OH MY GOD. HE ALSO ATE GRAPES YESTERDAY. HE ATE FREAKING GRAPES!!!!!!!!!!!!!!!!!!!!!! I have only seen him eat a grape once and that was when he was like a year. He ate them in therapy which might be hard to break. But, he grabbed them and ate them all by himself. So proud of my little dude!!
Yesterday, his stuffed little stuffed horse came in the mail! When he was younger he had a bunch of stuffed animals. Dinosaur and horse stuffed animals. When we move we had lost a few and ever since then I havent been able to find them in store or online anywhere. I FOUND THEM THE OTHER DAY! I ordered one and it arrived. He was so excited. He was talking so much! He was saying how he has 1 new friend and now he has 3 horsie friends. He was doing pretend play and saying one was a big horse and one was a baby horsie and he was pretending one was the mommy and one was the baby and he made the mommy say I love you baby and gave the baby horsie kisses. SO FREAKING CUTE! I wish I would have gotten that on video. He also pretending to put them to sleep. I did get that on video. I will have to upload it soon. Him and Autumn were chasing each other with the animals and pretending to be dinosaurs. It is a great feeling seeing them play together! Makes me happy. Just so proud of his progress and Autumn's progress. School is REALLY helping him. He should have his IEP later this month and I have no doubt that he has met most of his goals. I'm sure he is still struggling with his sensory issues and goals but he will overcome those in time. I talked with D's OT at UCP and she things I should mention something at his IEP and incorporating some motivating using certain objects when he sits down for lunch. Hopefully they will understand and help with this. I also really need to get on the ball with potty training. This is going to be hard. They kind of practice and school and he sits on it occasionally at home. I need to make some kind of reward chart and get some little undies! I think I will but some this weekend and try to contact his teach again regarding this. That is another thing I need to mention in the IEP meeting. COMMUNICATION SUCKS AT HIS SCHOOL! I get that they are busy..but when they dont get back to me in 2 weeks when I left a voice mail that is just unacceptable to me. Hopefully they will get better at this.
Another thing that happened! We have been going to Pretend City for over a year night. We go to the free family autism night every month. He has NEVER gone into the pretend grocery store. When we first started going he had limited pretend play skills and was only concentrated on just a few areas of the museum. He is branching out and actually went into the grocery store! This was a few weeks ago. This made me SO HAPPY! He was pretending to go shopping, eating, weighing items. He loved it. I also got pictures and videos of this too. I was so proud of my little guy. I'm hoping this is the start of him getting over his fear of going to new places and doing new things. Baby steps.
So let's see. No more neuro for us. No more endo. We just have speech, OT and regular pedi and a few other appts. Speech 3 days a week for both kids and OT 2 days a week for D. Not to mention I take autumn to her play date once a week and occasionally story time. I plan on getting them Pretend City passes for their birthdays! They LOVE that place. So now on the weekends and make during the week we will start going more.
I cant believe I will have a 4 year old and 2 year old in a month!!!! Makes me feel so old! Just kidding..kind of! Haha. I need to get working on invites. I'm pretty sure I have the one I want picked out. Just have to get it from this website and then print them myself. They are having a pirate and princess them! So cute! Hopefully the party comes together and goes smoothly. I'm going to be inviting more people to this one. Last year I tried to not invite a whole lot of people because I wasnt sure how D would react but he did great! Hopefully he will get excited about all his little friends being there! We are going to have it at a park by their therapy center and I'm going to get these little stomp rocket things. They have them at his play group and they are really fun for the kids. I was thinking about a cupcake station too..so the kids can decorate their own cupcakes! Fun stuff. I cant wait for them to have THEIR day. I am probably thinking too into this. But, unlike a lot of other kids..they dont really have much family, no grandparents to brag about them, etc. That makes me sad..and of course all they need is us and we always do family stuff. But, I really want them to have their own little day and feel special. Not sure that they will understand that the party is for them. But, I'm sure they will have a blast! :)
Let's see..what is new..Well, we have been doing the usual activities plus more! I'm getting more time with Autumn by myself. I take Autumn to this place called Jumpin' n Jammin. It is in Mission Viejo. We go every Tuesday morning with my friend and her young son. Autumn LOVES IT! It has a rock wall, bounce house, toddler area, games, obstacle courses, etc. It is made for adults too so I am able to go in the obstacle courses with her and such. I have a bunch of pictures. I will have to update this post later with pictures. But, she is talking A LOT more! We have really been focusing on body parts and names of objects. She can say and point to her eyes, nose, mouth, head, feet, tummy and ears. She has a hard time with ears sometimes but almost there! She is saying two-three word phrases. Still says no to everything but is starting to incorporate yes into her vocabulary haha..She is OFF the paci! WOO HOO. That was hard..and still is! Since she cant have that to soothe her she has become a little butt head! Such an attitude she has...haha. Probably the terrible two's kicking in too!
Devyn has also been talking A LOT!!!! It doesnt surprise but but does in a way. For the longest time I just hoped for the day to have a conversation with him. That is what I really want to hear. Not all the way there but close. He answers questions with more than yes and no now and I think he is really starting to get the difference between the two. His sentences are getting longer and longer now. He is getting really used to our routines and knows what is coming next. He is still having struggles with food and the variety of food he eats but he is getting a little better with it. I've been trying to think of new things to put in his lunch. Because they have been working on cheese and pepperonis/salami in therapy I got some thinly sliced cheese and cut up some salami put it in a tortilla and rolled it up. He ate practically all of it in therapy! So, I put one in his lunch today. I really hope he tried it. OH MY GOD. HE ALSO ATE GRAPES YESTERDAY. HE ATE FREAKING GRAPES!!!!!!!!!!!!!!!!!!!!!! I have only seen him eat a grape once and that was when he was like a year. He ate them in therapy which might be hard to break. But, he grabbed them and ate them all by himself. So proud of my little dude!!
Yesterday, his stuffed little stuffed horse came in the mail! When he was younger he had a bunch of stuffed animals. Dinosaur and horse stuffed animals. When we move we had lost a few and ever since then I havent been able to find them in store or online anywhere. I FOUND THEM THE OTHER DAY! I ordered one and it arrived. He was so excited. He was talking so much! He was saying how he has 1 new friend and now he has 3 horsie friends. He was doing pretend play and saying one was a big horse and one was a baby horsie and he was pretending one was the mommy and one was the baby and he made the mommy say I love you baby and gave the baby horsie kisses. SO FREAKING CUTE! I wish I would have gotten that on video. He also pretending to put them to sleep. I did get that on video. I will have to upload it soon. Him and Autumn were chasing each other with the animals and pretending to be dinosaurs. It is a great feeling seeing them play together! Makes me happy. Just so proud of his progress and Autumn's progress. School is REALLY helping him. He should have his IEP later this month and I have no doubt that he has met most of his goals. I'm sure he is still struggling with his sensory issues and goals but he will overcome those in time. I talked with D's OT at UCP and she things I should mention something at his IEP and incorporating some motivating using certain objects when he sits down for lunch. Hopefully they will understand and help with this. I also really need to get on the ball with potty training. This is going to be hard. They kind of practice and school and he sits on it occasionally at home. I need to make some kind of reward chart and get some little undies! I think I will but some this weekend and try to contact his teach again regarding this. That is another thing I need to mention in the IEP meeting. COMMUNICATION SUCKS AT HIS SCHOOL! I get that they are busy..but when they dont get back to me in 2 weeks when I left a voice mail that is just unacceptable to me. Hopefully they will get better at this.
Another thing that happened! We have been going to Pretend City for over a year night. We go to the free family autism night every month. He has NEVER gone into the pretend grocery store. When we first started going he had limited pretend play skills and was only concentrated on just a few areas of the museum. He is branching out and actually went into the grocery store! This was a few weeks ago. This made me SO HAPPY! He was pretending to go shopping, eating, weighing items. He loved it. I also got pictures and videos of this too. I was so proud of my little guy. I'm hoping this is the start of him getting over his fear of going to new places and doing new things. Baby steps.
So let's see. No more neuro for us. No more endo. We just have speech, OT and regular pedi and a few other appts. Speech 3 days a week for both kids and OT 2 days a week for D. Not to mention I take autumn to her play date once a week and occasionally story time. I plan on getting them Pretend City passes for their birthdays! They LOVE that place. So now on the weekends and make during the week we will start going more.
I cant believe I will have a 4 year old and 2 year old in a month!!!! Makes me feel so old! Just kidding..kind of! Haha. I need to get working on invites. I'm pretty sure I have the one I want picked out. Just have to get it from this website and then print them myself. They are having a pirate and princess them! So cute! Hopefully the party comes together and goes smoothly. I'm going to be inviting more people to this one. Last year I tried to not invite a whole lot of people because I wasnt sure how D would react but he did great! Hopefully he will get excited about all his little friends being there! We are going to have it at a park by their therapy center and I'm going to get these little stomp rocket things. They have them at his play group and they are really fun for the kids. I was thinking about a cupcake station too..so the kids can decorate their own cupcakes! Fun stuff. I cant wait for them to have THEIR day. I am probably thinking too into this. But, unlike a lot of other kids..they dont really have much family, no grandparents to brag about them, etc. That makes me sad..and of course all they need is us and we always do family stuff. But, I really want them to have their own little day and feel special. Not sure that they will understand that the party is for them. But, I'm sure they will have a blast! :)
Ten Things Every Child with Autism Wishes You Knew written by Ellen Notbohm
"Ten Things Every Child with Autism Wishes You Knew" (© 2005, 2010 Ellen Notbohm)
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Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute — the inconsistency There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.
Autism was once thought an “incurable disorder,” but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is a complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly — every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia. I can’t sort it all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
3. Distinguish between won’t (I choose not to) and can’t (I am not able to) Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*?” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5. Be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called echolalia. I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one right way to do most things.
8. Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, “If he would just…” and “Why can’t she…” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you — I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They may have had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s see just how far I can go.
© 2005, 2010 Ellen Notbohm
http://www.ellennotbohm.com/article-archive/ten-things-every-child-with-autism-wishes-you-knew/
.
_____________
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute — the inconsistency There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.
Autism was once thought an “incurable disorder,” but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is a complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly — every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia. I can’t sort it all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
3. Distinguish between won’t (I choose not to) and can’t (I am not able to) Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*?” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5. Be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called echolalia. I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one right way to do most things.
8. Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, “If he would just…” and “Why can’t she…” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you — I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They may have had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s see just how far I can go.
© 2005, 2010 Ellen Notbohm
http://www.ellennotbohm.com/article-archive/ten-things-every-child-with-autism-wishes-you-knew/
Saturday, January 14, 2012
So thankful..
WARNING: Kind of an emotional post. Sorry if it upsets anyone..just felt like I had to share our day.
Today was a hard day. Every year we go visit my grandparents and aunt at the cemetery on Christmas Eve or Christmas. We weren't able to go this past holiday but were able to go today. I just cant believe my grandparents have been gone for almost 10 years and my aunt passed away over 20 years ago..I really wish I was able to actually know her and have more memories of her. I bought them new flowers for their wall. Pretty bouquet of flowers I put together..
<3<3<3
I miss them so much. I don't have a lot of memories of my aunt because I was only 6 when she died. But, I of course remember my grandparents. My grandma was the sweetest lady you could ever meet...a truly wonderful soul. I used to always say that she was the only person who truly cared about me. I knew she would always love me no matter what I did... <3 My grandpa passed away suddenly less than 6 months after my grandma passed. 2003 was a very hard year. Probably the worst year ever.
Then we went to visit my other grandma at a different cemetery.
She just passed away this past April. I miss her a lot.
My grandma had 10 children. Tragically her first child died..She lived for a day and they had no idea how she died. I visited her too. <3
My grandma was so strong. She cared for 9 children all by herself. She had a hard life but in the end she was loved and appreciated by so many...I will miss her a lot.
Lots of emotions for one day. I just knew I had to go and visit them all today though and I'm glad I did. Life really is precious.
Devyn kept saying Hi grandma, I love you and I want to see grandma at home. That broke my heart because he of course doesn't understand. But, just hearing him say grandma is wonderful. I've just been hearing a lot of tragic stories lately about people losing their loved ones to unfortunate circumstances. Makes me heart ache for them and their families. Life can be so cruel because things happen that we cant control and we lose the ones we love. I am just feeling so thankful for my healthy children. Life is hard and we have gone through some difficult things recently..but when bad things happen it just makes you so thankful for what you do have. My sweet little nuggets...
Today was a hard day. Every year we go visit my grandparents and aunt at the cemetery on Christmas Eve or Christmas. We weren't able to go this past holiday but were able to go today. I just cant believe my grandparents have been gone for almost 10 years and my aunt passed away over 20 years ago..I really wish I was able to actually know her and have more memories of her. I bought them new flowers for their wall. Pretty bouquet of flowers I put together..
<3<3<3
I miss them so much. I don't have a lot of memories of my aunt because I was only 6 when she died. But, I of course remember my grandparents. My grandma was the sweetest lady you could ever meet...a truly wonderful soul. I used to always say that she was the only person who truly cared about me. I knew she would always love me no matter what I did... <3 My grandpa passed away suddenly less than 6 months after my grandma passed. 2003 was a very hard year. Probably the worst year ever.
Then we went to visit my other grandma at a different cemetery.
She just passed away this past April. I miss her a lot.
My grandma had 10 children. Tragically her first child died..She lived for a day and they had no idea how she died. I visited her too. <3
My grandma was so strong. She cared for 9 children all by herself. She had a hard life but in the end she was loved and appreciated by so many...I will miss her a lot.
Lots of emotions for one day. I just knew I had to go and visit them all today though and I'm glad I did. Life really is precious.
Devyn kept saying Hi grandma, I love you and I want to see grandma at home. That broke my heart because he of course doesn't understand. But, just hearing him say grandma is wonderful. I've just been hearing a lot of tragic stories lately about people losing their loved ones to unfortunate circumstances. Makes me heart ache for them and their families. Life can be so cruel because things happen that we cant control and we lose the ones we love. I am just feeling so thankful for my healthy children. Life is hard and we have gone through some difficult things recently..but when bad things happen it just makes you so thankful for what you do have. My sweet little nuggets...
Tuesday, January 10, 2012
No more neuro!
Gosh, It seems like I haven't posted in awhile. I need to keep up with this more often.
Anywho, We did the 3 day monitoring. It wasnt as bad as I thought but it was still difficult. The hardest parts were of course putting the things on Devyn's head as well as putting the IV in. He didn't know what was going on. He didnt understand why we were there. He just looked at me and screamed while they did these things to him. Made my heart hurt. Being in the hospital made me really sad. Just realizing that a lot of families have to live in these hospitals. Their loved ones dont always come home. Breaks my heart. We were able to leave. It isnt always the case for others. Being there for only 3 days felt like weeks! But, we were able to leave. I cant begin to imagine how others feel.
Devyn got restless towards the end..he did get some visitors though! He loved that. So thankful that a few people came to visit so he didnt feel like we were doing something horrible to him. All this stuff has changed him. Since he has gotten the eeg, MRI, hospital stay..he is somehow different. He gets scared easily, he is afraid of a lot of new places and things, his anxiety is through the roof..he is changed. But, the GOOD news is that there is no reason to believe he has any kind of seizure disorder. They didnt find any major activity on the eeg in the hospital except I guess possible signs of activity. But, the doctor assured us that it isnt enough for them to diagnose or put him on any medication. So, he was discharged from seeing neuro and we only need to be seen on a as needed basis. SO HAPPY FOR THAT! Happy that this testing is over with. I just hope my little dude will be able to overcome this fear of his. They gave him a bear for being discharged..and autumn too! :)
My daughter also had her big appointment with a developmental pediatrician. It was not a good appointment. I left feeling like the worlds worst mother. This doctor made it seem like I dont do anything with my child and that it is my fault she is delayed. She kept saying she sees red flags in her for autism. I denied such things. I know what autism is and yes she is a doctor but I KNOW in my heart that my daughter does not have autism. This lady was beyond ridiculous. She said quite a few things that was very unprofessional and offended me. I called and made a complaint and asked to switch doctors for her follow up. We will see what happens in 4 months...But, I was reassured when I spoke to Autumn's speech therapist. She completely agrees with me. She isn't a dev. ped. But she knows my daughter. She doesnt see ANY red flags.
I have been feeling some crazy emotions these past few months...
Life has been pretty complicated and bad as of late as well. I dont want to get into detail about everything..But, I just hope things get better for us soon. I am really scared and worried...I just hope everything turns out okay. I have also attempted to quit smoking. I havent smoked in 10 days. I hope I can do this but I am very weak these days..I just think I might give in. Life is too stressful. Until my next post..
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