It's not that I have forgotten about this blog, that's not why I stopped posting. I stopped posting because when things are hard and bleak it was just one more thing pulling at me.
Here's an update in our world.
The Doodle is now 10 and for the most part, his seizures are under control with medication but his Autism and OCD is off the charts. As he gets older, he continues to regress and it's still very hard to teach him things--especially patience. We had a serious cancer scare in 2013 and almost lost him.
He's still not potty trained and still doesn't speak one word but he does give some of the best hugs I've ever had so we have that going for us.
Jimmy is 17 and is a Junior in high school now. We couldn't be more proud of the kind and compassionate man he has become!
I've been busy over the last few years--I wrote a book about our story, published by Morgan James, The Dark Side of Autism
YOU CAN PURCHASE THE BOOK HERE ON AMAZON
If you've read the blog at all, it is a combination of stories and experiences raising a very special needs boy. Hopefully, some parents and/or caregivers will relate to my frustration along this incredibly difficult journey. It's a raw, heartfelt story of coping and acceptance at it's core. Without giving too much away (lol) it's not a feel-good story with a happy ending so be prepared.
In todays' day and time,
it's easy to lose sight,
of the true meaning of Christmas
and one special night.
When we go shopping,
We say "How much will it cost?"
Then the true meaning of Christmas,
Somehow becomes lost.
Amidst the tinsel, glitter
And ribbons of gold,
We forget about the child,
born on a night so cold.
The children look for Santa
In his big, red sleigh
Never thinking of the child
Whose bed was made of hay.
When we look into the night sky,
We don't see a sleigh
But a star, burning bright and high.
A faithful reminder,
Of that night so long ago,
And of the child we call Jesus,
Whose love, the world would know.
Merry Christmas to You
from the Doodle and his family
Too many people.
A forgotten cell phone.
And a crabby Doodle dressed as a Fireman.
So after getting dropped off by a frustrated husband because he couldn't find a place to park--for a night of pure terror and chaos in the streets of the McDonald area with thousands of people pushing their way around the neighborhood, standing in line after line at house after house to get the token piece of candy, I was ready for a Xanex.
Oh but the Candy. The Doodle doesn't even eat candy and could care less about it. Had they been passing out chips and salsa the night may have taken a turn for the better but he did not understand the concept of walking door to door to get something he doesn't care two craps about dropped into his Thomas the Train bucket.
He liked walking to the door, but he expected to stay awhile - maybe get invited in for a snack of Doritos and a turn at their universal remote. He didn't like walking up to the door and then having to leave. He cried at each house. He was very disapointed.
So we left after 5 houses. But now Jim was gone with the car since he couldn't find parking and the plan was I was supposed to call him to come back and pick us up. But, with no cell phone--it became a true nightmare. Did you know they don't have pay phones anymore? Not like they used to anyway. We walked a few blocks over to the Market and they almost laughed at me when I asked where the pay phone was....By now the Doodle was ready to go home. And I can't let go of his hand for one second because he would bolt. So they felt sorry for me and let me use their phone to call Jim.
We waited for what seemed like an eternity for Jim to pick us up in front of the market. And we chalked this Halloween night up to a huge learning experience as I binged on the candy from the Thomas bucket on the way home and thought about how the Jehovah Witness people are on to something with regard to not celebrating Halloween. Sometimes I kick myself for even trying...then I look over at my giant 12 year old and think about how this must really suck for him. He could have been trick or treating with his friends in his weird Coach Frank tennis suit costume that no one could figure out.
Autism is lonely. But any holiday or special occasion really reminds me of how lonely and cruel it truly is.
We got really lucky--and were give the opportunity to adopt Jaba, an 8 year old black lab/golden retriever mix. He is the absolute sweetest dog I have ever been around and is super gentle with the Doodle. He is well behaved, knows almost 100 commands, potty trained, etc. He loves to cuddle and is already a huge part of our family. The Doodle actually is engaged by him and loves to throw his toy. The Doodle also likes Jaba's dog bed for some reason and likes to hang out and watch tv in there....
Jimmy loves him too and has been taking really good care of him. Even big Jim is a fan....as skeptical as he was at first to try another dog.
Jaba was released and retired because his disabled owner that he had for years thought she was feeding him and giving him water but was not...and he got really sick and lost over 20 pounds. The Canine Companion people took him back, nursed him back to health and retired him from service.
Jaba is the perfect dog for us....almost too good to be true.
'Through My Eyes' - Lyrics
See the world through my eyes
It changes shape and it changes size
It's not quite the world you see
If you could find a way to look around inside my mind
Maybe you would understand me
I'm not blind, but I can't always see
I'm not deaf, but things can sound strange to me
I'm not trapped, but it's hard to feel free
Imagine what it's like to be me
Imagine what it's like to be me
It's hard for me to try to think things through or talk like you
Everything can be a blur sometimes
But if you walk along beside me, hold my hand and guide me
Together any mountain we can climb
I'm dreaming of my future and it's brighter than you know
I'll get there on a different road when I am ready to go
I don't need pity, I don't need tears
I just need someone to help me understand my fears
Tell me you believe in me, let me know that i'm OK
Help me feel safe in the world, and I will find my way
Imagine what it's like
Imagine seeing the world Through My Eyes
(Lyrics by Valerie Foley, Music by Fiona Johnson, Video by Phil 'Putnam' Spencer)
How is this mainstreaming my child? And whoever said I wanted my child mainstreamed? The Office of Education was the one that gave me a hard time when I told them I wanted to put the Doodle into a private school for autistic children only. I was told over and over what a bad idea that was because he would be missing out and not in "the least restrictive environment".
My point is stop telling me that is what you are doing and then doing something completely different.
I arrived at the Doodle's new Special Education Kindergarten Class and the first thing I noticed was that they had a big sign on the door that said "SPECIAL EDUCATION". This wasn't a handwritten sign just for open house night for the parents who might not otherwise have a hard time finding it--it is a permanent sign on the classroom alerting everyone that this is definitely the special ed classroom for the special kids. Because we wouldn't want them getting mixed up for a minute and thinking they're in a real classroom for regular kids. We need to label them and the classroom door.
As if I didn't know before I entered the classroom that I have a special boy in a special class. Thank goodness for that special sign on the door.
Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.
Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.
His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).
Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.
So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.
We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.
Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.
Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry.
I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.
P.S. Oh, you know I called that bus company back...six times in fact--demanding to talk to a supervisor-trying to get a straight answer as to how they possibly forgot to pick up my son for school and that the alleged 8:28am pick up time was not at all acceptable since I didn't want him being late to school every single day.
For being autistic, this little Doodle has one of the most intense gazes I've ever seen. My friend was over the other day and said he communicates so intently with his eyes. And she's right. He may still be nonverbal, but that doesn't stop him from speaking to us with his eyes and gestures. He is masterful at letting us know exactly what he wants when he wants it. He'll take your hand and lead you or grab your face until you look at him and he knows that you get what it is he wants. If you happen to not understand him, he's tenacious and makes sure he can get you to figure it out whether it be with pictures, pointing or screaming if you're taking too long. No words necessary.
If he could talk he'd probably say: speech can be so overated.
But he was fine. Really good actually. Only a couple of melt downs and issues with Doritos. He had a lovely Thomas the Train Birthday Cake and loved-loved-loved blowing out the candles...a couple of times. He would clap and get so excited! It was hard not to do it again. And again. People were nice and obliged the singing of that song a couple of times.
My favorite part of the party was watching the Doodle finally drink out of a big boy cup. He loves drinking out of a cup now and for the first time ever he is drinking juice! Now when he drinks out of a cup he wants the whole family to clap. He takes a drink, puts the cup down and claps and he gets pretty cranky if people aren't showing their support and clapping along. So he was drinking out of his cup and clapping for himself and the whole party was clapping with him and cheering him on. He was so happy and I was so proud. Then it dawned on me...he's FIVE and finally drinking out of a cup. I looked at a few of his little cousins faces and they looked confused as to why this would be such a big deal since they've been drinking out of a cup for years and no one ever made a big thing about it. But that's OK. When the Doodle hits a milestone, no matter how far behind he might be--it makes it that much more special for Us. And we celebrate. And we clap.
So I had a small gathering. I decided not to invite a big crowd of my friends with kids who would come out of pure obligation or even worse, dream up the perfect excuse as to why they couldn't make it. I kept it to just a few of his cousins and his only two "friends". I figured that the family and cousins would have to come; after all, they are legally bound to come since they are family; and then also his only two little friends from school (which I am friends with their mom's) and guess what? Neither showed up. Thankfully, the Doodle didn't miss them. He didn't know I invited them and it's not like his feelings got hurt; for me, one of the only positive things I've found so far about autism.
I tried not to be irritated, offended or take it personally...after all, I have a child with autism and both of these people have a five year old child with autism so who would understand more than me about not wanting to take my autistic child to a party of all places??? I get it. I completely get it.
But as I thought about it more and more--it bothered me more and more. If ever you were going to take an autistic child to a party, wouldn't you want to be in like-minded and similar company? Wouldn't you feel more than comfortable taking your child with his/her unique behaviors and characteristics associated with autism and feel accepted and understood at another autistic child's party? Wouldn't you, for once, feel like it was OK and you weren't being judged? That's the part that bothers me. If I can't count on my friends without children with special needs to understand what This is like...and I can't count on my friends with children of special needs to get it, who can I count on?
I think it's time for some new friends.
The Doodle turned five yesterday and I would have blogged about it yesterday but I was too busy giving him a Time Out. I'm not sure if he realized it was his Birthday and thought he could get away with more, but he was definitely on his worst behavior. He was put into a record number of Time Outs--9 to be exact....for various Doodle Bug infractions; the usual: throwing himself on the floor, screaming, throwing things, dumping dinner and so on. He was in a pretty crappy mood all the way until bedtime;then it got worse at bedtime trying to get him to go to sleep. It was one of those days where alcohol seemed like a pretty good idea (for me, not him). But I refrained from any libations since it was a Monday and the Real Housewives of New York Reunion was on. I needed to have all of my faculties about me to understand the craziness there.
We had enchiladas for dinner, which the Doodle spit out--so he ate his usual salsa and Doritos--I was a little bit offended, although he did love the guacamole and salad. We skipped the birthday cake since I knew blowing out the candles over and over and over was going to be a problem on this particular type of day. We will have the appropriate cake and ice cream at his little Birthday party this weekend. It will be a real blow out--he has invited both of his friends from school. Hopefully they like salsa and chips and don't mind singing that song over and over and over.
Reflecting back to five years ago--when I was expecting a standard and mundane experience with child number 2 since child number 1 was so easy....who would have thought we would have such a silly, cranky, cute, hard, challenging, rewarding, patience and character building little man to raise and worry about so much? I could have never guessed things would be this remarkable.
I'm happy that he is moving on to bigger and better things but sad because his classroom and his teachers were like home. He was comfortable. He knew what to expect. He had a routine. He knew what was expected of him and finally got familiar with the program and it's rules and structure. We'll have a little break for summer and then he will start his special ed Kindergarten--where he will have to start all over again. Besides not being ready developmentally, emotionally and physically, transition for autistic children isn't always the easiest and while he's probably going to be anxious starting a new school with a new teacher--and a new bus route, so will I.
I will close my eyes and pray. Here's to hoping for a smooth transition into Kindergarten.
Every day is like the Fourth of July when you have a child with Autism.
Spectacular colorful explosions in the form of salsa flying and fantastic displays of emotion rather than blowing up fireworks in the sky.
Similar. But different.
It was hot here--so we hung out in the back yard and played in the water.
We skipped the fireworks for obvious reasons.
The over-stimulation factor.
The irony of the predictable amount of unpredictable; our life in a nut shell.
On the bright side, the Doodle is really getting good at throwing a ball.
On a more positive note, he's really into trains right now and pushing cars around. My mom bought him a Thomas the Train battery operated set but he wants nothing to do with playing with the train on the tracks. No, he would rather turn the train on and watch it fall of the counter.
We really thought we hit the jackpot when Jimmy brought him home a couple of balloons from the dentist. But all he wanted to do was release them and watch them get stuck to the ceiling and then freak out when we couldn't get them down. Never again can we bring a helium balloon home; it's just not worth it.
And the best news....no seizures to speak of, except those annoying things that wake him (and me) up all night.
He's still trying to figure out which school he wants to go to next year. He can either stay at his current school and be a big 6th grader....or start Middle School and be a 6th grader in Junior High. I'm letting him make this important decision but I told him he can't keep changing his mind. He needs to decide and stick with it.
An old man, a boy and a donkey were going to town.
The boy rode on the donkey and the old man walked.
As they went along they passed some people who remarked "What a shame the old man is walking and the boy is riding."
The man and boy thought maybe the critics were right, so they changed positions.
Later they passed some people who remarked "What a shame.... he makes that little boy walk."
So they then decided they'd both walk!
Soon they passed some more people who remarked "They're really stupid to walk when they have a decent donkey to ride."
So, they both rode the donkey. Now they passed some people who shamed them by saying "How awful to put such a load on a poor donkey."
The boy and man figured they were probably right, so they decide to carry the donkey.
As they crossed the bridge, they lost their grip on the animal and he fell into the river and drowned.
The moral of the story?
If you try to please everyone, you might as well 'Kiss your ass goodbye!'
(To The Rhythm Of "Green Eggs & Ham")
Do you like these IEPs?
I do not like these IEPs
I do not like them, Geez Louise
I do not like them, Geez Louise
We test, we check
We plan, we meet
But nothing ever seems complete
Would you, could you like the form?
I do not like the form I see
Not page 1, not 2, not 3
A brand new box
I think we all
Have lost our rocks
Could you all meet here or there?
We could not all meet here or there
We cannot all fit anywhere!
Not in a room
Not in the hall
There seems to be no space at all
Would you, could you meet again?
I cannot meet again next week
No lunch, no prep
Please hear me speak
No not at dusk. No not at dawn
At 4 p.m. I should be gone
Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight
Sign here, date there
Mark this, check that
Beware the student's ad-vo-cat(e)
You do not like them
So you say
Try again, try again!
And you may
If you will let me be
I will try again
I almost like these IEPs!
I think I'll write six thousand three
And I will practice day and night
Until they say
"You've got it right!"
And so it went....Jim and I went to the Doodle's IEP on Thursday afternoon, it was Jim's first time at an IEP. I warned him that they were intimidating, sad and not at all fun and that I usually cried at some point and would probably have to get bitchy and demanding. He went anyway. He was surprised at how many people were there all sitting around a board room table ready to talk about our son. So we sat for close to 2 1/2 hours talking about the Doodle and his progress and lack of progress in some cases--we were told how far behind he really is developmentally; which is no surprise but so much harder to hear when hearing it read monotone in a crowded room from other people. An IEP, as personal as it might be, feels very clinical when they talk about the "subject" (your child) in terms of where he might be on the vast autism spectrum, what age level he is functioning and how much support he needs.
For the most part, I held it together; maybe because Jim was there with me. Instead, Jim cried. All of the people involved in caring for the Doodle go around the table and give their reports and talk about if he hit his annual goals--the teacher, nurse, speech therapist, ocupational therapist, shape aid, etc. And when they were all finished, Jim thanked them for being so very kind and caring so much for our special little boy--that's when he got all choked up; which, in turn, made me cry.
It's hard to make a decision on where to send the Doodle to Kindergarten since nothing feels like a good fit right now and especially because they can't tell me the definitively who, what and where--they have given a few options and I went and looked at what I could--I can either put the Doodle into a mixed class of different types of special needs kids--or I can put him in a very structured class for just Autistic children. But, they cannot tell me yet where the class room is going to be for sure and who the teacher may be. Without that pertinent information, I cannot yet make the determination, therefore, I did not sign the IEP in full and won't make that decision until I can weigh all the facts involved. Sigh.
Happy Number 500 Post!
Watching television lately has been more than depressing...probably something I ought to stay away from but it takes my mind off of my reality living with a little guy with Autism and Epilepsy. It’s nothing but bad news and Real Housewives. Devastation from the surge of Tornados in the Midwest and the South to the Giant’s fan, Brian Stowe, who is still fighting for his life after being brutally beaten at a season opener. There’s the constant threat of terrorism, the world coming to an end, tax increases, poor judgment from politicians (so what else is new?), the state of our school system, abducted babies taken from their cribs, senseless crime, unemployment, increase in Cancer and other diseases….need I go on?
Dora the Explorer and Blue’s Clues are beginning to make sense to me in a different way than before and I don’t mind having them on the T.V. instead of the alternative. Even watching the Celebrity Apprentice finale was depressing—yet enlightening. One of the finalists, country singer John Rich, was doing the show to raise money for St. Jude’s Hospital and seeing the many children and families who are fighting for their lives and trying to save their kids from devastating diseases like Cancer was a huge wake up call for me. Sadly but gratefully, it woke me up and reminded me to be thankful and blessed for everything I have and for my family. There could be much worse things than having a nonverbal special needs child with autism and a seizure disorder so I think I need to get over myself and remember to look at the bright side of things more often instead of dwelling on this unfair hand I feel I have been dealt.