Update

I know I haven’t write in a while. Well we have been busy. We increase the therapies, we added a special program I found with a Saint directing it. And also I concentrate my whole time in  2 pretty important things:

1) Help my son

2) Make my daughter and husband feel important, part of all the work and feel included in my life. Make them all happy the 3 of them.

So far things are working out. I hope they keep going that way.

My son is speaking. not in a conversation way. But now he uses words when he need them. HE still have troubles finding the words but when we help him he find them. And lately, this last weeks, he is finding them himself and has been surprising us in th emost incredible ways.

He said, with out been promted or helped : I’m So happy!!!!. when he was so excited playing with my daughter and mom. Yes he was playing with them, because HE is now a social little kid.

He still do not socialize with other kids his age. There is a little girl that keep wanting him to pay attention to her. She is the same age and even goes infront of him to tell him his name and start chatting none stop about something. He ignores her. But today at least he looked at her said hi and then ignored her. And when we left he said BYE and her name 🙂 .. A little mad though… but he said it!.

He says a lot of words and keep singing a lot of songs with all the lyrics. HE is right now “almost” at the same level as his peers, except for the jumping. And he can pass for a pretty quiet little boy that plays with the others.

In the other hand. He was tested in cognitive level and rated a little older than his older sister. :S. My daughter is 4.5 ..he is 2.8.. he rated 5… he reads…

He amaze me. But what I mind and care the most is that : ” HE IS SO HAPPY!” 🙂 and he knows it and he feels it, and he shares it. HE IS HAPPY!. that is all I want for my kids, to be happy!.

When I had his PPT and they asked me what was the most important thing I though he needed to develop. I answer ” A friend”. Because a Friend will pull or push him, a friend will love and understand him, A friend will make him eager to play what his friend plays or invite him to play what he plays. A friend, a friend is what he needs to develop. And for that he needs to speak, and for that he needs to coordinate his movements as good as the other kids so they invite him to play and he can make a friend.  SO, a Friend. That is what he needs. And we, teachers, therapist, and me, WE need to give him the tools.

🙂 So, we are here. I’m still here. It is just, I have no moment to write. I have a lot of things to do. 🙂 Like loving my kids and husband and hugs them thousands of times. 🙂

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What should I fight for?

My mind is now in doubt. My therapist team wanted to know how much have we improved, learn and develop. So they started an “non oficial” ADOS with my kids. In stages instead of all one day.  Yesterday they did the cognitive part of it and …  we were amazed.

He is 32 months now. That means a little more than 2.5 years. His results shown a 4 yo. He did things I couldn’t believe he knew how to recognize. 4 yo. That was what the results of his cognitive part said. Today she did a second part. THe results of this 2 parts told us… he doesn’t need any services. That what the numbers say. Not what we see.

According to the numbers he is not in the spectrum and he shouldn’t be receiving services. As is a non formal test they will just not take it on count. But now we are wondering what is going on. The only test that we haven’t made and that I do think WILL show a completly different thing. Is the LANGUAGE one.

All the testes show him as  capable as a 4 yo. But he still doesn’t speak to much. And worst he is going back to no talking or scripting. This since we turn on the TV again.

We spend 2 months with out tv None at all. And he stopped scripting. Now He sees 30 minutes TV every 3 days and 1 hour on Sunday’s. He is scripting again. We will turn off the TV again.

 

It is just that now I don’t know what to fight for. For his diagnosis? or for he not to be diagnosed at all?. I was thinking We should wait until he is 5 for an official diagnosis. Now with the school district meeting, next month, I don’t know what to do….

Should I fight for him to be in an special needs program or should I fight for him not to and just qualify for language therapy?. I had talked with all of my therapist separetly. 3 think he is in the spectrum, 3 think he is not. 1 of the ones that doesn’t think he is ASD thinks is all about his pretty STRONG will.

He has a strong will. I can deny that. But I don’t know if that is part of him not wanting to talk or if he CAN’T.  I don’t know now. My mind is in doubt.

 

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Time to sleep hell

Right now I’m sitting int he living room hearing my 2.5 yo scream like crazy all the words he know how to say that he thinks will communicate his frustration.

“What do you waaant” “Open” ” No sleep” ” LECHE” ” WHAT do you want” ” Use your words” “NOOO” ” I love you” ” OPEN”

 

All because.. I don;t know!

He is overtired. Extra super Overtired. He had 2 therapies in the morning and 2 hours of school afternoon, they had a “obstacle” race at school this afternoon and he was extra excited at the end of school when I picked him up.  He was singing the whole time in the car and playing with his sister. Then we arrive home and hell started. He was tired but didn’t want to sleep, he was hungry so we ate dinner. I wear him his PJ’s and said: ” time to sleep” and hell went loose.

My daughter, who was also extra tired today, went directly to her bed and fall sleep. Good think she sleeps like a rock because they share bedroom and since 8pm he hasn’t stop for long.

I went and hugged him, place him in his bed and lay there with him. He hold my hand so strongly I couldn’t move for a while. Until he start relaxing so I move my hand and he didn’t let me go. I wait longer. When It was, what I tought, already half hour I move and risk a look. HE was looking directly at me like saying : ” don’ you dare”. I went and cover my daughter as she was already all tangle in her covers So I arranged her bed and he kep looking directly. I move to the door and said “good night, I love you” in a whisper. He answer : ” I love you” in a whisper and then started screaming.

I close the safety gate we have at the entrance of their bedroom so he doesn’t wander around if he wakes up at night. He went there to hit the gate and scream.

Is 11 pm.  HE is laying near the gate screaming and falling sleep then waking up and screaming bloody hell again for 10 minutes. He has been doing that for an hour already. I’m so tired and sad. This hasn’t happened for months. 😦 what happened?.

 

he is screaming “mom?mom?” he is breaking my heart.

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Just existing

🙂 The last few days-weeks, we have been just living.

There has been bad news and good news. 2 horrible bad news in our lives. 1st the husband of one of my friends died in an accident leaving her alone with her 2 kids, under 4yo both. So sad :(. and the second, our OT- my son’s OT- has been diagnosed with a chronic lethal disease. We are so sad , she also has 3 kids under 4 yo and 1 is special needs. So I’m trying to find out how can I help.

But good news have been coming daily. My son is talking more and more, he is scripting from TV but as we turn off the TV 9 days ago and has just turned on for 30 minutes last Saturday  he has been cutting the scripting of his favorite TV show : ” peppa Pig”

He still calls me “MUMMY” – add UK accent- but I love how it sounds So i have no problem with that :).

He now Knows that if he adds “I WANT” before whatever he needs we listen and he obtains. So now his favorite phrases are : ” I want Ipod” ” I want leche” – milk- ” I want cookie” :).  And he just added the : ” Me pasas?” ( can you give me?). to the phrase. Mixing Spanish and English.

He started his terrible 2’s stage but amazingly he is smarter than his sister to calm himself down. She takes ages to calm herself down when she enters the meltdown cycle. – that is how we call it, when she even forgets why she started the fit for and then turns in a complete different matter and at the end she doesn’t longer understand why is she crying but she needs to finish-. He calms himself faster. And he is pretty good at that if NOBODY intervenes.

He is growing, he is growing so fast is good but it hurts, because I can also see what he is lacking and missing. And Where we are not doing improvements. I also can see his personality is more quiet and serious and I can’t really discern where the autism starts and where his personality ends. I think they are mixed together.

He is now comfortable playing with other kids around him, not exactly playing with them but at least he is not longer scare of been surrounded by other kids playing. He covers his ears when is to noisy so now I’m teaching him to say “too noisy” or “ssshh” to his sister, if she is singing to loud for him.- he is getting the idea but big sister doesn’t help as she couldn’t care less when he does “sssh” to her and she keeps singing out loud-.

He loves 2 of his classmates at school and in fact one of them loves him back as a great friend. They look for each other and smile at each other when they arrive at the classroom. This little guy can’t talk and he just smiles at my son and comes to welcome him. My son says his name and smiles back. That is for me a HUMONGOUS step for my son and according to the other kid mom also for her son.

They are the only ones that had never miss a class so there where 4 different days during the last month they were the only ones in the classroom and this helped them to make a special link between them.

The other little guy looks for my son as at the beginning he noticed he was the other only one saying 1 or 2 words and this other little guy is a chatterbox :). So he follows my son calling his name and my son just keeps walking but at the end of the session he says good bye to him using his name.

🙂 I love his school. I do highly recommend it to any mom in the area that needs a special school for her kid. No matter if is autism , or premiee, or anything, I can’t imagine a better place for them. They are so awesome. I love them.They had made me see there is a lot of good people in the world. In fact, since I started this trip in the autism world… I have seen more love in the world than ever.

 

 

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ThanksGiving

Thanks I have to say, because we are fine, we are alive, we are in the correct place to receive the help my son needs. Thanks because we have food on our table, because no matter how difficult things sometimes go in the economic sense we still have food on our table. My kids have clothes.

Thanks because I don’t and won’t forget where I come from, because I have been working to share that with my kids, because I remember when my parents kill themselves working and taking care of me and my siblings and give us a happy home no matter how bad things were in our family economy.

 

Thanks because I learn from them to appreaciate every single thing in my life no matter how awful looks for others sometimes. It is just great, it is Just what it is! and it is my life, my family life, OUR LIFE>

Thanks because along my road to this moment of my life I learn in theory and in practice that I can’t cry about things I can’t control. I can just work in what I CAN CONTROL and that has helped more than anything in the way we as family has accepted autism and our current lives.

Thanks because no matter how hard is sometimes been more than thousand miles away from any single member of our family  we are always really near by, enough to call each other and cry or enjoy each others lives.

Thanks because in the last years no one has died. No one has parted for a different life, no one has suffered to much that couldn’t survive in my whole family.

Thanks because I know sometime that will happen, because we are not eternal, but As I know I can’t control that I just enjoy the time I can have with each one of them, near or far.

Thanks because no matter how weird, or difficult the road seems to be, at the end it always has a reason to be that challenging. And is always a great one.

Thanks because now I have the age and the brains to understand that and not give up just because the scenery looks worst than an horror movie. It can be even fun sometimes.

Thanks because the Autism in my boy. is just barely part of the Person he is, It is not so profound in the spectrum. It challanges him and makes things difficult to him but he won’t give up. HE doesn’t know how to give up!.

Thanks because that is how I was raised. I never knew what “I can’t” meant until I hit teenager years. That means for 13 years I never said I can’t and I never thought I couldn’t, and that make me believe, even when I said it after 13 years, that I always COULD.

Thanks because apparently that characteristic was inherited by the one that needs it the most. My son.

Thnaks for my husband who is a fighter. He has to if he has a wife like me.

Thanks for my daughter who is just like her father, a fighter with her mother temper. That will give her troubles but will also help her to jump and fight challanges. That also has made of her the amazing sister-teacher she is to her little brother, thanks for her amazing big heart.

Thanks for my son. Who opened a whole new different world for all of us. Who Show us how dang wrong we were in so many things and how beautiful is to look the world from this new perspective.For his amazing little eyes and bad temper, for his lovely way to say “A love U” when we less expect him to express himself, and his way to show you this time he is not just repeating a phrase he learn, he is meaning it with a big hug and a “slimy” kiss.

Thanks for my life. Because is so imperfectly perfect. Thanks.

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Afraid of sleep

I’m afraid of sleep lately.
It is not that I’m afraid of darkness, as I was in the past. It is not that in afraid of nightmares, no, although I’m afraid of dreams.

See, when I lay in bed ready to fall sleep I imagine thins I would love to see happening, I had done that since I remember. Sometimes the story I tell myself keeps going in my dreams, sometimes It doesn’t.

But every time I imagine things I know CAN happen. Maybe not tomorrow or next month, but things that eventually can happen. Can become a reality if I decide to follow an specific path.

Is more like programming myself neurologically. More like watching in dreams or imagining the pros or
Cons of a future possible situation just IF I choose to….

Lately I don’t know how to start my sleeping process. See I not longer know what I want that can be imagined.

I can’t imagine my kids been teens anymore, not because I can’t see them physically as teens but intellectually.

I know they will go to that stage and I can pretty much imagine and see how my daughter will, might, be. But I can see my son.

I don’t know what to expect. Who he is going to grow to be, how…

We are working, him and all of us, to help him become the best of what he is meant to be. But with him I can’t even try to guess … I just don’t know how to

No anymore

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Hiding

If I count how many times I had hide in the bathroom to cry since March I can say to many to count. But I I look at october I can count just one. Just one.

Things are getting better, we are understanding and accepting the routines that we follow to have 14 hours therapies and 6 hours of school per week with my son and 15 hours of school withy daughter.

Still is just the 1st week of November and I’m crying in the bathroom.

I was watching a video of a kid with autism playing basketball and dpi more than 20 points in the last minutes of the game when they let him play. Everybody celebrates him and he is happy, but I couldn’t stop wondering why do thy wait so long to let him
Play?

He has been the helper of the team for ages. Bringing water helping toy rain them. But never played. Until the trainer decided ok let him feel the uniform and the a kind of “wtf” moment ” let him also feel the court” and he showed them
He is awesome.

Why do they waited so long? He couldn’t have been awesome at the game just because he felt it that day. Basketball requires practice. So he has been awesome for ages. Why do they wait?

Because he didn’t express his feelings? That he wanted to play? And while I’m wondering and crying thinking that that might happen to my son, that he might want something and never express it I heard him saying : ” Stop, MY turn!” to my daughter and I couldn’t avoid to star crying….

So I’m
Hiding in the bathroom crying ….

Basketball is awesome

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Vocabulary

My not anymore “No Verbal” Son is speaking. We still have a looong way to go for him to have a conversation bue HEY! He is 2.3 years old! Wasn’t expecting a conversation from
Him yet. Although some peers do it already, I have to say.

He is saying names. And pretty clearly. He says his name and recognize people is speaking to him, this sounds dumb to some but for us IS HUGE!.

He is fighting with his sister, – how come a mom could be excited about this?, well I Am- because fighting with her means several things. He is standing for himself, he is trying to get her attention so she handles him a toy or mine so I stop her to take it from
Him and as I do not go Imediately the. He fights his way. He is USING words like “mine” “me turn” ” great lion grrr mine” – as if he was doing scary noises to her- “go go go mooomiiiiii” and “no no no – sister’s name here-”

He is complementing all te phrases of his favorite book with the correct pronunciation of the words, often, run, fun, sun, moonlight, minutes, new, you.

He is adopting my husband Spanish expressions : “esooo”.

He says good morning and good night, let’s go, sleep, hungry, mad, agua, food, backpack , cool (for school), hello, hola, bye

He counts 1 to 10 when he is about to melt down and calms himself and then counts to 20.

He recognize most of the vocabulary letters and most of the numbers 1 to 20 (16 and 18 have him confused). He says clearly every letter and number.

My little guy says right now more
Words of the ones his big sister used when she was 2.3. She had a smaller vocabulary but assembled sentences whit the few she had. She is a chatterbox now. So, what the future says? No idea.

But all this therapies, school and Mommy, sister an daddy work seems to be having results and we are so happy 🙂

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Giant Steps

We are having giant, humongous, steps. And I’m so afraid we find a stop to this pattern.

HE has been sayng so many words, even dancing and waving following the words of a song. Then singing the song with ITS WORDS not just the music.  He is interacting so much with his siter, with me, with my husband. He even tried to interact with my daughter classmates and one or 2 have the patience to play with him, a lot to ask a 4yo!.

He is reaching the milestones of his peers, like reaching the terrible’s 2 stage. that I’m not crazy about but I’m exited to see HE IS FEELING and behaving as a common 2 yo. :).

He still have a long way to go. Still doesn’t engage in a conversation and fin it difficult to go forth and back with words with somebody. But hey! the kid JUST learned to speak!. He speaks! that is HUGE!. He still have a lot of motor issues.

He might walk and is trying to run now, almost there, he is trying to jump and loves to bounce. But as for the more detailed motor moves we are at lost. 😦 Fine motor is not his top. It is probing to be so difficult for him. So now we are including more specifics about that one. I don’t expect him to write, he is 2, my 4yo still finds difficult to do so, and might have to be with the fact she can use both hands to do so and haven’t practice more with one or the other. But I won’t, and also asked the teacher not to, push her to be a righty or lefty. I’ll let her decide, she will eventually, and if not she will just haveto write with both hands whenever she feels like.

As for my little one. Far is the day when he will write. But now, right now. HE CAN SPEAK. 🙂 He said I Love You 3 days ago at night when I said good night and he has been saying those words every night since then to me adding a kiss.

He says hug, I did it, NO, YES, Bannana, Apple Pie, apple, strawberries, ball, go, ready, set, steady, counts one to 20 in English and one to 10 in Spanish, says water and agua, food, hungry, tired, papa, book, pig, tiger, lion, monkey, elephant, dora, boots, tico, isa, benny, swiper. he says “oh man!” he sings the wiggles your waggles away, he sings the whole ABC song, he says all done, no more. He says Bye, and Hi, and adios and Hola, He tries to say Hi and Bye to every single person that comes in or out of the elevator. He says Hi to everyone when he comes in the building of his school and then to every single teacher in his classroom, that is a one on one  teacher student so there are 5 teachers 5 kids, He says Hi 5 times. He says Bye to every one and started waving his hand when he waits for me at the door. While I get his backpack. That he should be getting but sometimes I forget to make him pick it up and I just do so.  He says, sadly, TELE ( TV) , and peppa pig please, he says : ” OPEN POPAVOD” ( open please – por favor- mixing English and Spanish). he says rice , he says beans. He says cereal no matter he has never ever touched it, he knows the word because his sister loves to eat cereal for breakfast.

He says so many words.  And I won’t ever forget the people that has helped us to reach this stage and keeps working for and with us.

One of them just died. He never knew the importance of his creations on my life. He might imagine, he never knew for certain. Steve Jobs. His iPod was the tool for my daughter to make contact with her little borther. His iPod was the tool for my son to avoid a meltdown at the grocery store for so long until he find, with it, how to filter, sounds and colors, lights and a lot of sensory signals until finally he starting looking around. And leave the iPod at one side. His iPod changed our world, let us learn differently. His gadgets ideas changed our lives. ANd I’m thankful for them, And now he will change more lives with the SIRI idea. with the iPhone 4S.

I do know his ipod is not the magical tool, but it is one of the tools that helped us and keeps helping. Now  my son uses so many ABA flashcards, so MANY. HE is leaning more and more vocabulary, he repeats, they catch his attention, he chooses which ones he wants to learn, he moves the gadget with his tiny fingers, His is even improving a little his fine motor skills with it.

So thanks Steve Jobs, thanks to the 6 therapists that work with us, thanks to the school principal and angel that started that program for kids with different issues and observes them so much she KNOWS aht they need and how to focus in each one, Thanks to the teacher that does one on one with my son during those lessons. And thanks to my daughter and her patience and how smart she is that ALWAYS knows HOW to make Her little brother to say something she thinks is important for him to learn. She just Taught him how to say HIS NAME, 2 days  ago. Not even the therapist couldn’t achieve that. My daughter did. And I was amaze. She used the most easiest way.

We hang a “halloween curtain” in the middle of the house, it has hangings like cheerleader puffs. She grabbed a corner and started cheering his name. HE started imitating the action and was just moving the curtain around like her, then making the syllables sounds and then, just from the noting, the following day, he grabbed the curtain and started cheering his Name. Like if it was something he used to do since forever.

So yes, I haven’t write for a while. Our life has been a little crazy between 14 hours therapies and preK , bot kids, same hours different schools. ( I need to clone myself). But it has been AWESOME , because it is working. :).

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And the word of the day is…..

DELICIOUS.

 

My 27 mo old, almost non verbal kid that has only used 3 or 4 words and of course 20 numbers ( because he is all about music and numbers) said : ” delicious” today. Just because he wanted.

I was in the kitchen cleaning and my husband was helping him to feed himself, we are teaching him to use the spoon and fork  and not just his hands,  and after one try of his meal he looked at my husband and said ” Delicious…. oink”  I was amazed. I know where he took the word from, we haven’t teach it to him, nor his therapists nor his school – that just recently started  and has only been there 2 days so far- no, it was from “Peppa Pig” a BBC- Nick Jr kids cartoon. and I knew because of the “oink” at the end of the word.

But he used it correctly. With out been prompted. And the TV was off so he wasn’t imitating in that moment, he was remembering and decided to use the word after he tried his meal, tasted it, said mmmm and then added the “delicious…. oink”

I’m so happy, is a long word for him! and it was so clear I understood him from the kitchen and my daughter said: ” WOOO great job – insert name- and you are right it is …” and he followed ” delicious”

She was so happy of making hm say it again and he was so happy we understood him and he answer his big sister. ( that is only 4 yo).

I’m so happy all the stress I was carring for this 1st week of new school routines just dissapeared…

 

🙂

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