Christmas, 2013

Christmas Eve morning Jake wakes up happy, I tell him it is Christmas Eve and ask him who is going to come and see him. He replies “Santa bring Jakey presents, yeaaaaaa!!” He is now bouncing up and down running around, super excited about getting a present. In the middle of his bouncing and running he suddenly stops in his tracks. He looks at something a friend gave me a couple of years ago. It is a manger with a star over the baby and it say’s “Happy Birthday baby Jesus!” Jake starts singing Happy Birthday baby Jesus. As simply as I can, I tell him the Christmas story of Mary, Joseph and baby Jesus. I’ve told him the story a number of times but this time he really seems to listen. Jake sings the birthday song again. He cradles the baby Jesus and says “I wuv baby Jesus!” Then he is off, back to his running, bouncing and singing a montage of Christmas songs which include Jesus loves me and the birthday song.¬†

We had a great Christmas this year and it was the best one with Jake. He played, loved his gifts and was super happy. We had a couple of small meltdowns but the memories that we all will carry with us are those of a happy little boy with huge eyes, smiling at all of the gifts for him and his sister under the tree. For the first time Jake opened his own gifts and the best part was that he wanted to open them. Allie offered to help him but his reply was “no, Jakey do it”. Jake didn’t cry. Jake didn’t run away. Jake stayed with us all morning and for the first time he was able to be a part of the whole Christmas morning fun.

What more could I have asked for ūüôā

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Joy

This past week was pretty busy to say the least; finishing up Christmas shopping, wrapping presents etc. ¬†I have to say Jake handled all of the hustle pretty well. ¬†He had his moments, but don’t we all ūüôā

On Thursday, Jake had his Christmas party at school. I’ve talked about how when I come into the classroom it usually upsets Jake, he cries, hides or sits in a corner by himself. ¬†But when Jake saw me, he said “Hi Mommy!” It was the best moment of the day! ¬†He didn’t run away, he didn’t cry, hide or sit by himself. ¬†I was like¬†wow, this is the best! We brought the kids to the table to make an edible craft, all of the children sat at the table with the exception of Jake. ¬†He proceeded to roll around on the floor and didn’t want to participate. ¬†I gave him a few minutes to roll on the exercise ball, thinking he needed a break and needed to give himself a minute to prepare to sit with me, his friends and other parents at the table. ¬†Finally he got up, sat with me for a few minutes, just enough time for me to capture a picture and then he was back to the floor. ¬†As I let him stay on the floor a pain shot through me. ¬†I had already forgotten how happy I was that he greeted me when he saw me at the beginning of the party!¬†I wanted him to sit like the other kids were sitting, I wanted him to participate and I wanted that time with him in his classroom to make a fun treat. ¬†He wasn’t having any of it and this thought went through my head;¬†here we are in a special needs classroom and the other special needs kids are sitting at the table doing their craft, why won’t Jake? He stands out even in the special needs class! ¬†I don’t think it would have bothered me as much if the other children were typical and Jake was the only one on the floor (I could be wrong). But it killed me how even in a special needs setting Jake can’t sit and do what the others are doing. ¬†Seriously, my child who has special needs cannot do what other children with special needs can! ¬†And I can imagine what you all are thinking because I thought it too — don’t compare your kid, it’s a busy time of year for all kids, typical or not, they all are having a hard time…etc. But at that moment it just hurt. ¬†Now the big picture here is that Jake did well, he loved having me in his class and for the most part he behaved. ¬†But the fact that he couldn’t sit at the table just stayed with me! It was hard for me; I mean really really hard! So, I gave myself some time to let myself be sad, cry and work through all of this. ¬†The next morning I thought about all of that again and it still stung but I realized something pretty big — I realized I was missing all of the good stuff! ¬†This was 15 minutes of an hour party! ¬†It wasn’t the entire party that he couldn’t or wouldn’t participate. ¬†I gave myself a little pep talk, I prayed about it and let it go! ¬†Seriously, sometimes I get hung up on what Jake cannot do that I miss seeing what he is able to do. ¬†Jake was able to do a lot at the party; he sang songs, sat with his friends on their little benches and received presents, he played with a few of his peers and gave me lots of smiles and kisses. ¬†Because this was a few days ago I can see now that he did very well, he worked through his anxieties and he was amazing! Sometimes I forget to look for the positives when it comes to Jake. ¬†There are so many things we work on with him and if I’m being honest I hone in on the negatives; if I don’t then I won’t know what to work on with him. ¬†This is not really the way I am. ¬†I am more of an optimistic person — you know the kind of person who sees the glass as being half full vs. half empty. ¬†But when it comes to Jake I tend to focus on what he can’t do versus what he can. ¬†Saying this out loud helps me realize this is okay to a point but more importantly I need to focus on the joyful moments even more.

Here is what brings me joy!

Jake’s language skills have increased a great deal over the past few weeks. ¬†It is pretty amazing! ¬†Jake’s sentences are clearer and more complete. ¬†He speaks more for himself than just repeating and scripting what he has heard. ¬†A few days ago I was going over Jake’s daily report and Ms. J indicated Jake had gotten in trouble for pushing a friend. ¬†I asked him if he pushed his friend. Jake stops and thinks about it and he said “Yes. Jake pushed E, we don’t push friends”. ¬†I told him we should never push or hit our friends and he responded “Jakey needed to get a toy.” ¬†I was so impressed that he knew the rule that we don’t push our friends but the big deal was that he could tell me why he pushed her. ¬†It is all pretty amazing! ¬†There are more stories like this one this week but one in particular stands out. ¬†On Wednesday the chorus at Jake’s school sang and Jake’s preschool class went to hear the Christmas music. ¬†Jake does not particularly like this as it is usually loud, lots of people and a change from his routine. ¬†I told Jake he would be going to hear Ms. J’s son (C.) sing. Jake told me “I don’t think (fink) that is a good idea, I don’t want to hear C. sing”. ¬†At school, Ms. J took the kids to the auditorium and Jake wouldn’t go in, although he did stand at the door for a few minutes. One of Jake’s other teacher’s took him back to the classroom to take a break and work on a craft. ¬†During the day Ms. J texted me and told me what happened; when I picked Jake up from school I asked him if Ms. J took him back to his classroom, he said no. ¬†I asked if Ms. A took him to the classroom, he said no. ¬†It was quiet in the car for a minute and he, all on his own with no prompting, said “Ms. L took me to my room”. ¬†It was so awesome!! ¬†I thought he was done talking and thought I wouldn’t push him anymore but all along he was thinking and gave me an answer that he knew I was looking for — so amazing!!

It is all hard but one thing I am learning is to see the joy in each moment! ¬†I am learning to see that smile in the midst of a meltdown, to see the progression of speech in the midst of his gibberish and to see where he is excelling. ¬†“Joy delights in Joy” ~ William Shakespeare

One of my JOYS ūüôā

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A few odds and ends…

These are just some of the things that have gone on since my last post…sorry for the informal writing but I wanted to share ūüôā

~ We are loving Jake’s vocabulary these days. Although he repeats often what he hears, his own personal words are becoming quite extensive! The other day I told Jake he needed to pick up his toys. He looks at me and after a few moments, of what I am guessing is him figuring out the words he wants to use, he says “He don’t think that is a good idea, he needs to play!”. Which sounds more like “he don’t fink that is good idea, he needs to pway”.¬†We are still working on the proper use of nouns, pronouns etc. but it is hard not to laugh when he says something like this! Not that long ago he would cry, scream or run away if what was asked of him was not something he wanted to do. When I tell him that I think it is a good idea to clean up he crosses his arms over his chest and says “hummmph, Jakey not fink so because Jakey is pwaying!” I smile because he is using his words. At times I want to cheer and say way to go, but the mom in me is more apt to say ‘get yourself up and clean up this mess’! Never a dull moment around here!

~ Last week we¬†went and picked out our Christmas tree; Jake seemed excited. We had been talking about Christmas trees, I showed him pictures from last year where Jake put an ornament on the tree etc. He didn’t seem scared as he has in the past years. When we meet John at Home Depot, Jake greets him and says “Daddy, we get our tree today”, he seemed excited. John walks over to a tree that is leaning on the other trees and pulls it to a full upright position. I wish I had thought to video Jake at this moment because I can’t describe Jake’s face. His eyes became HUGE and his mouth fell open and he stood there looking at this huge tree in awe! ¬†It was such a sweet moment, we laughed, Jake cried and said no tree. ¬†Ha! ¬†He didn’t scream and panic though, something he has done in the past which usually means it will take a LONG time for him to warm up to the idea. ¬†When he doesn’t scream or panic it is usually an indication that he will be okay with it, eventually. ¬†So we bought the tree, put it in our house and the tree hasn’t been looked at once by Jake. ¬†He accepts the tree being in our home but he would rather not talk about it or look at it…which is fine by us. ¬†Anything is better than the panic screaming!

~ Jake has had a few hard days at school. Like most kids he senses all of the excitement in the air but unlike other kids he has a hard time finding his calm (a really hard time). Therefore he has had some not so good days at school; days where his wonderful teachers try everything to help him to no avail. But thanks to Jake’s awesome teacher, Ms. J, she bought the class a sensory tool called a body sock. It is basically something that Jake can climb in to and hide. The idea of this thing is like our blanket at home, he can tune out the rest of the room and calm down. It took a while before Jake was willing to try it out but once he did he loved it! When given the opportunity to hide Jake can find his calm and regroup so to speak. ¬†It really helps him and because of this (in my opinion) Jake had a day last week where he got to go to the treasure box, he hasn’t done this in quite a while. Even at home when I see that he is having a hard time I will ask him if he needs to hide and he can now reply “yes” and I’ll give him a blanket so he can regroup. The other day I asked him if he thought we should get the body sock like Ms. J. has at school for him to use at home. He takes a minute to think about it and says “Jake hides in sock at school, not at home!” ¬†He says it in such a way that says¬†you’re silly mommy, that is only for school not for home. ¬†

~ Jake has never commented on being hot or cold. He can be sweating bullets in the summer and I will say “Jake, you are so hot you are sweating”, his automatic answer every time is “No, Jake not sweating. Jake is a boy”. The same goes when I think he may be cold. When we went to get our tree it was a cold afternoon, more like freezing. Jake won’t wear a hat (except the one on his coat) or gloves. So we are standing there looking at trees and he holds up his hands to me and says “I hurt”. Not sure what he is talking about I ask him to say it again — sometimes it is very hard to understand Jake’s words or to understand what exactly he is trying to say. It is like a guessing game. Anyway, he says it a few more times before it dawns on me his hands are cold. So I tell him “Jake your hands are cold, you need to put them in your pocket.”¬†He looks at his hands and says “Jakey’s hands¬†NOT cold, Jakey’s hands¬†hurt!”¬†Oh, okay I see the difference there….so I take his hands and just put them in his pockets. ¬†I ask him if they feel better, he says yes. ¬†We laugh because sometimes it is all you can do…

~Jake never wears pants at home. ¬†As soon as we are home his pants and socks come off and he runs around in his underwear and t-shirt. No matter how cold it is, this is what he wants to wear. I’ve tried to get him to wear PJ’s but he won’t, as soon as I put them on him he pulls them off. I’ve given up on that battle thinking when he wants them he’ll let me know. ¬†So the other day after we had gotten the Christmas tree and Jake had told me his hands hurt he comes over to me and says “I hurt”. ¬†I ask him where and he tells me he needs long pants on and then runs to his room to get his PJ pants. ¬†I am thinking this is a big step here…he is cold and is finally sensing he needs something on his legs to make them not hurt. ¬†So for a couple of ¬†days he has to have the ‘polar bear’ pants. Well the other day he other day¬†I look over at Jake and see him looking at his legs with a perplexed look on his face. ¬†Jake has a ton of bruises on his legs. ¬†Since the boy started walking he has had a lot of them on his shins as he falls a lot and runs into things all of the time. ¬†But I see him sit down and start to really look at the bruises and then starts to cry. ¬†He cries saying “I hurt, he needs polar bear pants”. ¬†Jake runs to his room to get his polar bear pants and wants them on and then it all comes together for me. He hasn’t been cold he just didn’t want to see the bruises on his legs.

With Jake you never know what is going to happen next. ¬†It is always a guessing game; no matter how we try to prepare him or ourselves. I am sure I have said this before but each day is truly a new day! We never know what to expect and we don’t try to figure it all out anymore.

These are just of few reasons why it is fun, and at times frustrating, being the parent Jake ūüôā

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2013 Christmas Tree

the crazy days

Jake has been bouncing off the walls since Halloween. And we are just entering the Christmas season — yikes!!! It is pretty typical of most kids this time of year but if my memory serves me right I could help my other kids find their “calm”. Helping Jake find his calm proves to be a bit more challenging. I’ll paint you a picture ~ he wakes up happy, bouncing, humming, spinning and crashing into whatever he can find. Oh and¬†whining — we can’t forget the¬†whining¬†because this is what he does nonstop all day. We do our sensory exercises. I stretch his muscles, squeeze him until I have no strength left — he wants more so John jumps in and squeezes. We do whatever we can to help him calm down. He wants to calm down, you can see it in his eyes but he just can’t find that one thing that will help his body find that neutral zone. His whines are his way of expressing himself because he is still working to find the right words to fill in the gaps. I wish he would find those words soon because OMgoodness I hate whining — seriously it is like nails on a chalkboard for me!¬†¬†He struggles but nonetheless he is one happy boy.¬†

I talk a lot about Jake’s happy face, his smiles — I can’t describe it enough. ¬†Seriously, it is what helps me get through those tough crazy, sensory seeking, whiny patches of the day. It’s always the same thing “Jake, tell me what you need in a big boy voice.” He replies “Ok” but continues to whine. So I search his face for that smile in his eyes, I see it and know he is okay, just struggling to figure out what he wants to say. Now, I am not saying all of Jake’s behaviors are Autism or Sensory related. I mean he is a typical little boy in many ways. He likes to test the boundaries and he likes to whine when he knows it might get him what he wants. Jake likes to play, run, build things with his Lego’s and read books. The hardest part is figuring out what is typical kid behavior versus autism/sensory behavior. Allie asks me nearly every day “why is he doing this?” I wish I knew, I wish I could give her a solid answer to explain everything Jake does. Truth is I am learning right along with her; it is hit or miss some days. There are times we cheer because we figured Jake out for that second and sometimes we just throw our hands up in the air, not knowing what to do next.

But that is just it, as with any child, you help them moment by moment to find their big boy/girl words, you help them to find their calm, you help them use nice hands or nice words. As a parent you try to help them any way you can to provide a stable environment so they can learn and grow to be the best kid they can be.  

Crazy days are part of the norm around here — it wears us out. But Jake is learning, expressing his needs more and is beginning to find his own calm. Crazy days or not we are ready — we will get through the holiday’s with lots of laughs, tantrums, crashing, squealing, hiding and lots and lots of smiles!!!

Hiding (finding his calm)

This is Autism

My last post was titled What is Autism. My message was mostly about the statistics to help those whom don’t know very much about autism as well as for those with new diagnosis. If I were to write it again today I would add more, a lot more!!

Recently Autism Speaks went to Washington D.C. to call for a national autism plan. I agree with this topic, there needs to be a national plan. There needs to be more funding for therapies, there needs to be more recognition and more awareness. Suzanne Wright, a co-founder for Autism Speaks, wrote a letter titled a call to action . If you have time, I encourage you to take a minute to read it. For me, her letter is a bit unsettling.

The Autism community isn’t happy about this letter. Frankly, they are outraged! ¬†Outraged with the fact that the only voice that was heard was the voice of a grandmother (Suzanne Wright) and not the voice of an autistic child, adolescent or adult. Some of¬†her¬†words: “living in despair; fear of the future; exhausted, broken parents; lost, helpless, burdensome children; a national emergency”. My thought is parenting any child typical or not leaves you with moments of despair, exhaustion and at times the feeling of helplessness. She paints a pretty scary picture of what autism is and although it is scary and hard it is SO MUCH MORE!¬†Autism does not mean the child is doomed, autism does not mean that there is no hope and autism does not hold all the cards for many of these words.

When I first learned that Jake was on the autism spectrum it was scary, I didn’t know what to do, I didn’t know where to turn, and for a long time I thought perhaps Jake might be misdiagnosed. Jake didn’t fit the picture of the one I had in my head of what an autistic child should be or look like. Jake smiled all of the time (still does), through my reading I was told Jake wouldn’t smile much, I read that there would be no hugs, there wouldn’t be much laughter nor would there be any empathy. Jake is all of these. ¬†A lot of what I read didn’t match my boy. When you go to the websites to find out all you can about autism they tell you the negative side of autism and you have to dig and search to find articles about the positive side of Autism. After reading more I realized that Jake was not misdiagnosed, I realized there was more to Autism than the fact that Jake lines up his toys, walks on his tip toes or spins continuously.

There is more to Jake than his label. If I were brand new to the spectrum, her letter would scare me, her letter would lead me to believe there is no hope for my child. Seriously, I would think he was doomed. But the community spoke up about what autism really is…check out some of these¬†posts¬†by autistic children, autistic adolescents, autistic adults as well as parents like myself.

Autism is SO much more than statistics and numbers.  This is Autism:

smiles and giggles

hugs, kisses and tickles

incredibly smart, always trying to figure out the problem

quiet, hiding under a blanket

playing peek-a-boo

reading the same stories over and over

running, crashing, jumping, spinning

singing

lots and lots of cuddles

Jake will always have struggles but I believe these struggles will help mold him into a strong individual. Jake will have to work hard for each and every thing he wants; this will make him determined. Many things will not come easy to Jake and he will have to push himself to figure it out; this will make him a fighter. Jake is full of smiles and his heart if full of love; this will lead to compassion.

As I’ve said before ~

Autism WILL not define Jake.  Jake will define who he is and who he wants to be!

This is Autism!!Jake_Gordon83113 (4)

What is Autsim

I was thinking about what to write today and the word Autism kept coming to the front so I thought I would share with you some information and current statistics from Autism Speaks:

  • Autism now affects 1 in 88 children and 1 in 54 boys
  • Autism prevalence figures are growing
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs a family $60,000 a year on average
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are nearly five times more likely than girls to have autism

The numbers will be different in a year or two, they have already increased since Jake was diagnosed. When Jake was diagnosed in 2011 the statistics were 1 in 110.

There is no conclusive one reason as to what causes autism. One of the first myths I heard was autism was caused due to poor parenting; cold and distant parents. There are a ton of these myths out there from refrigerator parents to vaccines to the environment. As of now there is not one factor that is listed as the sole reason a child is autistic. I’ve researched this trying to find an answer as to what caused Jake’s autism. Every time I read a new study or read older studies they just don’t apply to Jake. ¬†I think for some children (and this is my opinion only) that vaccines do cause their child’s autism, food allergies have caused their child’s autism and even the environment caused their child’s autism. I could go on and on about all of this. If you were to Google causes of autism it would take you days to get through all the information that is out there.

Here is what Autism Speaks has to say:

Not long ago, the answer to this question would have been ‚Äúwe have no idea.‚ÄĚ Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

As I said before, I am not 100% certain as to what caused Jake’s autism; it could have been my age (I was 40 when I had Jake), it could have been the¬†environment.¬†I have researched, read countless books and asked a lot of questions. What I’ve determined is Jake was born with Autism, he was different the moment I laid eyes on him. As his mother, I could just tell something was “off”. I may never know why and at this point, where we are right now, I am going to say it doesn’t matter. Jake is Autistic. We work hard. Jake works ¬†harder. Jake will have struggles, he will always have to push himself a little harder than his typical peers and he will face many obstacles in his life. ¬†Autism is scary but it is a part of who my child is.

 Autism WILL not define Jake.  Jake will define who he is and who he wants to be!

*If you want to learn more about Autism go to the links posted above. ¬†Autism Speaks¬†the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.*

Good Morning :)

From the beginning Jake has loved music! ¬†Before he could talk his face would beam and he would move his body as best he could to the beat. ¬†Now that he can speak he loves to sing along to his favorite songs and I must say it is too cute and really awesome! ¬†Jake seems to love all types of music from classical to rock to contemporary Christian. ¬†Jake will find children’s songs on his IPad and sing along; currently he loves all of the nursery rhyme songs — ABC’s, Mary Had A Little Lamb etc. ¬†And he loves listening to the radio and when a familiar song comes on he loves to dance.

About a year or so ago a Christian artist, Mandisa, came out with a song called Good Morning. ¬†Good Morning Song¬† If you ever want a song that will wake you up and make you feel good this is a great choice and one of Jake’s favorites. ¬†Jake calls it the “uh-oh song” and the smile that shoots across his face when he hears it is hard to describe. ¬†Maybe infectious is the right word, when Jake smiles and starts singing I can’t help but smile and sing along too. ¬†In the middle of the song there is a rap portion (not really, but if you listen to the song you’ll see what I mean). ¬†Jake has been trying for a while now to sing this part. ¬†Last week on the way home from school Good Morning came on the radio and Jake says “I wuv this song”! ¬†He has his hands in the air and clapping to the beat and then the song gets to the rap part and the boy starts singing along….word for word. ¬†As I am driving and listening to him sing all I think about is how awesome this is and tears fill my eyes! ¬†It is no small success, this is huge! ¬†I take a minute to see the enormity of this moment and wish I wasn’t driving so I could have recorded him singing this…I was amazed. ¬†What amazes me is how a year ago he only knew a handful of words; a year ago he couldn’t sing along to this type of song and here he is today not only singing the correct words but clapping to the beat and my favorite…car dancing ūüôā

I struggle a lot with Jake’s autism. ¬†There are days I feel as if I can’t handle this anymore but there are also the days where I wouldn’t want it any other way. ¬†Autism has made me slow down, take a breath and see things I might not see otherwise. ¬†Honestly if given the chance I wouldn’t change anything because that would mean changing who Jake is as a person. ¬†There are positive sides to autism, for me it has made me stop in the middle of a busy day and take joy in the simple act of clapping to the beat, singing along with a song and the little voice that shouts “I dancing”.