I just realized it has been a bit since I blogged. In the spirit of feeling guilty, I thought I owed you a little somethin' somthin' to tide you over until I can really blog. So, here are a few cool updates.
1. J-man is using 3 word sentences. Now, before you go having a party and breaking out the Three-Buck Chuck, each and every word must be prompted and 50% of the time he has a hissy fit when we try to get him to do it. But we can get him to say "E-ye wan cone" (ice cream) with a bit of effort. And, I have managed to get him attempt a TON more words, with prompting. He is trying, even though it is hard... so props to him.
2. I think J-man might be able to read. Ok, so that might be going a bit far, but he has... on two separate occasions.... pointed to words and said them. On one occasion, he saw the word 'shoe" in big bold letters, said "sho", and ran and got his shoes. And then wanted to go outside. So, I'm not saying, I'm just saying...... weird things run amok.
3. I got a new car. That has nothing to do with the J-man, it just makes me happy.
So there, now you have something to chew on until I write something really inspiring.
So let me take you back to last week, Meeting Day. Head Honcho leaves with promises to "look into" what they could do and if they could "work out" an exception, and to get back to me as soon as possible. And she did. The next morning I received a call from Head Honcho, and it goes something like this (note liberal use of paraphrasing):
HH: Good morning. I wanted to let you know that I have looked into the issue of getting J-man summer service at his child care....
Me: Yes?? (note hopeful sound in voice)
HH: ... and I consulted with Advocacy Agency and two other school districts and they all said that summer sessions are not required to provide those services, so we will not be making any accomidations in the plan that we can provide. We can offer your son ESY in a special needs classroom.
HH: ... I know this isn't what you wanted, but it is what we are willing to provide...
GEMM:So, what you are saying is that you just called Advocacy Agency and they said you don't have to do it? And you aren't going to try to help us ...?
HH: Well, yes... you may call Suzy Advocate and talk to her yourself. Her number is .....
GEMM: Yes, I will call her and get back to you.(note cold tone of rage in voice)
So, GEMM calls Suzy Advocate. After an hour of discussion (or arguing... whatever) with Ms. Advocate, she has basically told us this: Because the Extended School Year Rule does not address Least Restrictive Environments, they don't have to comply.
What?!?!
Basically, the argument is that the rule doesn't talk about it, so they don't have to do it?
To me and GEMM, that is complete BS.
I called the Department of Education and talked to the specialist there. I explained the situation, and my confusion about why they would say that they did not have to comply with IDEA/LRE in the summer. She laughed. I asked her if she could provide me with something that explains it. She said "Well, the reason you can't find anything is because there isn't anything! That is not true, and if I was you I would request a mediation meeting" (fancy talk for a sit down with the Department of Ed and hash it out... not to be confused with a Due Process meeting, which is bigger and scarier).
'Nuff said.
A little research later (and lots of Law reading), we wrote a Letter. Allow me to dazzle you with just the highlights:
J-man qualifies for ESY via the "Self Sufficiency requirement. Specifically, J-man needs to maintain skills regarding his IEP goals for social development and communication as reflected in Minnesota Administrative Rule 3523.0755 Subpart 2 D 6 'development of stable relationships with peers and adults" and 7 "basic communication".
ESY is able to comply with IDEA 2004 requirements for Least Restrictive Environments. J-man's educational setting does continue into the summer. Additionally, Minnesota Rule 3525.2335 governing Early Childhood Program Services, Alternatives and Settings states in Subpart 2 B 3 that "A school district must provide direct and indirect special education services by district special education staff attending a community based program". There is no stated waiver or exception for ESY services noted in this or any other rules. Additionally, nowhere in the ESY Rule is there any reference that suggests they are exempt from complying with the requirements of IDEA 2004 for a Free Appropriate Public Education. Indeed, the Minnesota ESY rule apparently only addresses criteria for these services, not the services themselves, and therefore should still need to comply with IDEA. Additionally, IDEA states when implementing ESY services the public agency may not "unilaterally limit the type, amount, or duration of those services".
Yeah. Bite me.
It was sent, and we waited. And waited.
And today... SUCCESS! Apparently, they have found a way to "work it out" for us.
I am exhausted and rocking a major headache, so I will give you all a brief low-down on our school district meeting and go to bed.
Essentially, here's what happened. The entire team (Birth to Three, Three to Five, and the Head Honcho) came to the house and we all sat around the table and pow-wowed. The Head Honcho came out strong and a wee-bit hard-assed, and if I was anyone but me I might have caved at that moment and laid down like a rug. She informed me, with a lot of academic high-flalootinprogramy wordage that they are not required to provide the same services during the summer, they are not held accountable to the Least Restrictive Environment requirement, and that what they have to offer is good enough. Now, this is not what I have read, or heard, and I have done some research....
I didn't cave. I am not sure I came out swinging, but I do believe I made my point clear: J-man greatly benefits from where he is, will not benefit from moving his services to that location, they cannot provide what he needs there, he does qualify and should be able to get services where he is at. I explained that while I understand they don't have the program he is in during the summer, they should. And that, given his unique needs and situation they should make an exception to the hardcore position they have, since what we are asking serves him best and the other option does not.
My hubby popped in and provided our united front, plus a steely eye and presence that says "we mean business". Plus a few well placed (yet polite) words.
She didn't cave.... exactly. What she said was that she would "look into" whether they could make an exception for J-man for the summer. She needed to "consult with others" and will get back to me "soon".
So where does this leave us? Not sure. I know that if they turn us down our next step is to go into mediation with the Department of Education. While we did not out-and-out say we would take it that far, I am fairly sure she got that vibe from us. And we would... in principle alone. However, I find it utterly amazing that we might have to go there.... for 3-4 visits over the summer??? Really??? Don't they have better way to spend their time? So, I am hoping that they can "work something out" so we really don't have to make a mountain out of molehill.
Link UPDATE: For those of you interested, this is a wonderful commentary: Into the Mainstream
Books. I love books. I always have loved books. As a kid I used to go to great lengths to read my books: under the covers with a flashlight, in the car, in the bathtub, at the movies. Yep, my mom will still tell stories about how I used to bring a book to the movies because... heck.... what else is there to do before and after the movie? And what if the movie is boring?
Exactly. I was... am... a complete, total, 100% geek.
Before I became a mother, I dreamed of reading aloud to my children. I would read my favorite books from childhood... the Little House Series, James and the Giant Peach, Winnie the Pooh. We would snuggle together in bed and stay up far too late reading stories. I would cave into all their pleas for 'one more story mommy'. A love of reading would flow into them from me, and we would share this one thing always....
*sigh*
J-man won't let me read to him.
I tried to do books at bedtime. I would try and read the words (think board books, people) and point to pictures, and he just wants to turn the pages or look at the pictures. I would just try labeling and he would sometimes watch me, but never expresses real interest. I am sure it is a language issue, plus a processing issue, plus another way to have my heart break. But, he is only three... so there is hope.
However, onward.... to books I love.
My Top Books From 2009
Ok, so this list isn't books published in 2009. Just books I read and really, really liked in 2009. Note: not all of these books are high falootin, fancy shamacy books. Some are just great trashy reads, some are brilliant works of art. I will try and distinguish them for you! Also note... they are in no particular order of greatness. I am not good enough to rank them!
1. Schuyler's Monster by Robert Rummel-Hudson. This wonderful memoir that has really affected me. Touching, funny and entertaining at the same time. See my "review".
3. The Mercy Thompson Series by Patrica Briggs. Ok, so the previous 2 books are writing masterpieces. This series is just plain old Brain Candy. But really good brain candy. Pure candy, 100% no nutritional value whatsoever. Think Twilight, but good. Oh, and this is actually a series of 4 books, so it is kinda a cheat... but whatever. Paperbacks are cheap.
4. No god but God by Reza Aslan. Ok, complete geek book. In essence this is a book about the history and explanation about the Islamic faith. I picked this book up after I saw the author on the Daily Show with Jon Stewart. I found this book very interesting and well written. This is a book for the person who just would like to know and understand a little more about evolution of today's Islamic faith and how it effects the world today.
5. The Year of Living Biblically by A.J. Jacobs. Whereas #4 is a serious exploration on Islam, this book isn't nearly as serious. And yet, it is. The author essentially attempts to live the Bible as literally as possible for a year. It is very funny, interesting and educational. I laughed and learned at the same time.
7. My Baby Rides the Short Bus by Yantra Bertelli, Jen Silverman, and Sarah Talbot. This is a wonderful collection of short stories and essays from parents with special needs kids. These stories are NOT the "chicken soup for the soul" type of stories, but are hard and real and filled with truth. (Confession: I think I actually read this in January 2010. Oh well)
So if J-man can't appreciate my love of books right now, maybe you can enjoy it a little.
(oh, and if you have any recommendations... pass them on!!!!)
Let me start with the story, and then move on to the rant. It'll be a little more coherent that way.
A few weeks ago we met the J-man's new teacher and speech therapist from the school district. Over the next few weeks we are going to lose Ms Kristin (much to our deep sadness), and Ms Becky and Ms Jane will be working with him at his preschool. Of course, Ms Kristen has set the bar shockingly high, but I am going to remain hopeful that his new teachers will be as excellent.
During this initial meet-&-greet with the new folks, the subject of J-man's ESY (Extended School Year) eligibility came up. Essentially, ESY is summer school in 'special ed' language. And yes, the J-man qualifies. Apparently, however, they do not provide the community based services in the summer like he is getting now. The only way he can get any coverage of either speech or teaching is if we enroll him in their multi categorical classrooms.
Now, we have already addressed the issue of the multicat classrooms. We toured, we considered, and we rejected the idea. The reason he is enrolled at his current preschool is because we believe, strongly, that typical-developing peers are a tremendous benefit to our boy. He has been hugely successful in this environment, and the idea of putting him in an environment that is exclusively with other special needs kids (many of whom have significant behavioral and language issues) does not jive with our goals for him.
Now, the rant.
See, this all goes back to the idea of Least Restrictive Environments and Inclusion. In a nutshell, inclusion is the ideal in which all children learn together, regardless of disability or ability. According to Wrightslaw, the Individuals with Disabilities and Education Act states that the Least Restrictive Environment policy says that school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers to the maximum extent possible.
Dan Habib eloquently deal with the issue of inclusion for his documentary Including Samuel.
I highly recommend this documentary (check out your local PBS station for viewings!)
Now, the issue of inclusion is a thorny one. I know this. Inclusion is difficult to start, requires lots of teacher training, good classroom supports, and a commitment from all involved to make it work. It isn't always easy. Another documentary series, Educating Peter (and later, Graduating Peter), highlights both the challenges and rewards of inclusion (another series I highly recommend).
I believe that whether or not inclusion is appropriate for a child is truly on a case-by-case basis. However, I also believe that.... done well... inclusion should absolutely be the goal for the vast majority of children. And for the J-man... well, this is a no-brainer. His current achievements in preschool, with appropriate support, is crystal clear. Hands down, inclusion is the only way to go. He needs typically developing peers. They help him learn. It is essential.
So now, we get to have a meeting with All-Powerful School District people to argue about getting him some summer service at Jack and Jill. Have I mentioned that we PAY for him to be in preschool... a lot of money...? And we are only talking about 3-5 one hour sessions over the summer to address issues and help him maintain skills?
Yeah.
So I get to be "that parent", and see if I can convince them that his least restrictive environment IS preschool, and they do have an obligation to continue his current programming. Wish me luck, because GEMM might have to peek out on this one.
And like everyone, I have good days and I have bad days.
.
Lately, my days have been on the darker side. I am not sure if it is because of the winter blahs or if the everyday grind is starting to get to me. What I know is that I feel sad a lot, I feel frustrated a lot. As J-man develops more vocalizations and some awareness of the need to communicate, he has also developed more temper tantrums, more outbursts, and more stubbornness. Ooooh, he knows how to push buttons.
.
For example, today, after a series of outbursts and general crankiness from the boy, I was in the kitchen doing my least favorite chore ever (dishes) and J-man.... for reasons only he could possibly know... climbed on the table and proceeded to dump the entire package of Goldfish crackers on the floor. Now, in the grand scheme of things, this isn't that big a deal. But like an open wound that just keeps getting poked, my patience just fell apart. After what could be termed a complete parental temper tantrum, the J-man and I were both crying. We spent the next half hour making up and snuggling on the sofa.
I am just plain tired of dealing with his delays. I know that other mothers could call their 3 year old to dinner and they would come. They can get their own shoes, own coat, with requests from their mommies. J-man.... no way. Sometimes he seems deaf, and he seems to have zero desire to please me at all. Other mommies just don't have to work this hard all the time, do they?
I don't know how to redirect, regroup, refocus. I feel stretched thin as tissue paper, and more fragile.
Ok, so this is totally off topic, but I just had to share.
I am taking a writing class. Yes, me... a writing class! Why, you may ask?? I have no idea!
Actually, that is not entirely true. I think I have found a lot of solace in writing this blog, and I just want to be better at it. I have no great aspirations of writing an Oprah Book Club best-seller (Hey Oprah, call me *wink wink*), but I like the idea of treating it more like a craft. I'd like people to enjoy my stories and get something out of them.
The course is called Mother Words and is taught by Kate Hopper. Check out her blog here.
Anyway, I may plop a few of my attempts at "real writing" here. I would love feedback if you have the time!
J-man has been going to his new speech therapist for nearly one month. Not long, to be sure. But his mouth has been moving more in the past few months than it ever has, making attempts at sounds and words every day. So our new therapist has had some of the best exposure to his new 'skills'.
I asked her yesterday if, given her experience and what she now sees J-man doing, if she thought Apraxia was the right diagnosis for him.
She said yes. Most definitely.
Of course, we both agree that it isn't the end of the story.... there is more going on that just apraxia. But getting a definitive diagnosis of apraxia has been hard because up until a few months ago, he wasn't making enough attempts to say anything. Now, however, she can "see" the oral-motor sequencing problems.
There are days, when J-man is trying hard and doing good, when I feel like maybe we will see the end of this road sooner rather than later. And then there are days... like today... when I just can't imagine how we will ever make it.
According to everyone who is anyone, Three is suppose to be a Big Year. I have high hopes for Three. I think Three is gonna be Your Year. I don't exactly know what Three has in store, but I see great and terrible things for Three. I am excited for you and the magical Three.
Back from vacation for a few days, I have been meaning to write. And I just can't seem to gather my thoughts in any way that makes sense. So I guess I will just write a little update about our trip and try and come up with something cooler later.
Our trip to Arizona was... for the most part....lovely. The weather was freaky. When we arrived they had just had 3 days of rain, which apparently is freakish. After we arrived, it hailed. And was cold for Arizona.... 40's -50's. Then, it got nice, sunny, and in the upper 50's to low 60's. So that meant J-man could run run run. He was happy.
We saw the sun. He was happy.
He had his first ice cream cone. He was very happy.
Very very happy.
This was Daddy's cone for about 2 minutes.
All was well until the last day. Then the sinus infection... which had been brewing... hit him hard and fast. My once cheery, easygoing little man showed me the meaning of a complete meltdown. And lucky us, we were flying home.
Flying with a toddler with a sinus infection. Mommy was not happy.
So, overall, I give the vacation a "B". Illness and rainy weather aside, it was a good time.
We have flown the coop and are "snowbirding" (for a long weekend at least) in lovely Arizona. My parents, bless them, have fled the cold white winter north to warmer climes for the month, and we are completely using them for the weekend so we, too, can get warm. Too bad for us that we came down during a cold weekend in AZ! Ok, 55 F isn't bad, compaired to the great white north... but it isn't balmy either. Ah well, J-man loves to run outside at least! And we have hopes of 60's before we leave.
Sadly, both the J-man and I have wicked colds. Why oh why, always on vacation?!?! Of course, it isn't holding HIM back. He wants to go OU OU OU.
Stay tuned! Many delightful details of our adventures to come!!
Tonight, the J-man and I attended a Family Fun Night for special needs kids at a local indoor park. Think McDonalds Playland without the french fries. J-man loves the place... and because all the families there were parents and children with special needs, it felt like a place we could be totally free. No one had any expectations, just complete open acceptance. How lovely for all these wonderful kids and their parents!
Anyhoo, at one point the J-man saw the candy machine and insistently signed "eat". I got him a few Skittles and we made our way to the seating area. He signed and said "candy" as he munched. One of the other parents seated next to us asked him his name. Of course, he didn't respond.
Then this man, in a friendly way, asked J-man to 'Give me five'.....
AND HE DID IT!
Jonathan high-fived a perfect stranger! And, to make it even better, he went on and did the "up high/down low" part. I didn't even know he KNEW that.
Now, I believe that the J-man is experiencing some serious brain growth. He has realized the communication is probably pretty darn important and that.. basically... he sucks at it. So he is frustrated. Impatient. And he is two..nearly three... and thus his favorite activity is doing whatever he wants whenever he wants, especially if mommy doesn't want it.
He loves it. LOVES it. He has evolved from this anxious, unsure child to this confident, excited, social boy. He walks in, goes to his locker and willingly takes off his coat and hat. Puts them away, by himself. Walks with me, hand in hand, to his room and knocks ever-so-gently on the door. We go in and he turns to me, gives me a hug and a kiss, and pushes me out while closing the door in my face. Yeah, mom... don't let the door hit you on the butt on the way out.
He joins in classroom activities willingly and joyfully. The other children in the room apparently love him. I am told that there are a few children who are particularly interested in him, will pull him to activities and try and engage him. The amount of things he has learned is utterly amazing. I believe that... for the J-man... being with peers who engage him, whom he can model after, learn from, and enjoy has made a huge difference.
His mouth is moving. And moving and moving. He is starting to imitate sounds...sounds I and hubby make, others make, even things on the TV. He is trying words. Mostly, he gets the first sound in the word, but he is making so many more attempts. It is encouraging. He still doesn't always try to use sounds or words to communicate his wants, needs or thoughts, but the fact we are hearing more noise out of him... aaaahhhhh, heaven.
I am not sure, but we might have had the best IEP meeting ever last month. Definitely, the bar was set very high for every subsequent meeting we have. We made the decision to continue to get the special education services at Jack & Jill Child Care instead of moving him into the district classroom, and it is the best decision we have made so far. The center had TWO staff in attendance at the meeting and they were completely willing to work with Jonathan on his goals. The district folks were wonderful, and we came up with a plan that I think truly addresses what needs to be the focus for Jonathan right now. I am just thrilled with the way things are going...
To add to it all, we are starting new speech therapy next week. We decided to go back to Associated Speech with Janet Jacobs, and they were willing to take us on. She is advocating a different approach with the J-man, and while I am not sure what that will look like, I am optimistic about what we might gain.
Next week will be a tremendous week for the J-man. In addition to starting his new speech therapy, he is also moving into the preschool room at Jack & Jill. With the big kids! I am nervous but extremely optimistic. I think he will love it. And I think that we will start to see even bigger and better things down the road.
Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence. -- Helen Keller
January is the month of resolutions. As a result, you can find every Tom, Dick, and Henretta at the gym running on treadmills and sweatin’ to the oldies. Alas, I am no different. These three years post J-man have not been good for my body, and while I would love to blame him, I have no one to blame but myself. The gym is possible because of daycare. Because of daycare, I can drop the J-man off at the gym Kids Play and he runs off without a care in the world. I get a guilt-free hour or more to partake in one of my least favorite activities knowing that he is happy as a clam.
Yesterday, after what can only be described as a bum-numbing spinning class, I went to Kids Play and peeked in the windows. J-man was running around with all the other kids, chasing balls, climbing on the indoor playsets, and generally having a grand time. As I secretly stalked my own child, this Man-child appears at my side. He was over six feet tall, gangly, pimply and awkward-looking as only the newly pubescent can look. He looks down at me through these off-kilter wire framed glasses and launches into this friendly banter about how much fun the playland is.
How much he would love to be able to still go in there.
How he really didn’t having anything to do because his mom was in yoga and he didn’t want to disturb her. Because that was embarrassing.
How he was with his younger sister in the Kids Fitness class, but they were jumping rope and he can’t really jump rope. Because that was embarrassing.
How he wishes he could go swimming but he didn’t have the proper swimsuit and he didn’t want to go ask his mom.
How it was all OK because he can just wander around and see if there is something going on.
His face, pimples and all, was so open. So innocent. His soul was right out there for all to see. His eyes never wavered, but met mine with that uncomfortable intensity. In fact, his whole being seemed to radiate this intensity. He would have told me… a stranger… anything.
And I wondered: when life was going to beat him up? Will his spirit be hurt by the cruel world… by his peers or by people unwilling to listen to this boy in a growing man-body? Or listen to him in the wrong way?
I wonder if my son will be like him, so open and fragile.
We have been blogging for a full year now! Who knew I could keep this up? But truly, it is cheaper than therapy (for me, at least!). For those of you so inclined, I would love to hear from you about what you like (or don't... but be gentle please) about my little blog. I aim to improve in 2010!
I had hoped to write this brillant piece on how far we have come and what we are hoping for in the new year. I wanted this insightful retrospective on this journey. Something thoughtful and inspirational.
When GEMM rears her head, it is rarely a welcome thing.
However, sometimes her fire is just what is needed.
As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!
I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.
"Couldn't he miss daycare one of those days?"
"Errr.....no"
"Well, I guess we just have to put you on the waiting list for a cancellation."
Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.
Emails flew. Voice mails were left. And management would not budge on the policy.
Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.
So we quit.
What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.
With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.
Actually, not shopping. It isn’t like you can get on Ebay and get a therapy dog. I was actually just looking at therapy dog programs specifically for children with developmental delays. I had gone to a parent support group last week and several parents had therapy dogs for their children. One parent talked about how the dog helped with calming during tantrums, the other with communication issues and safety. It was an interesting discussion because I had been thinking for several weeks that a dog might be good for Jonathan. I hadn’t thought as far as a specially trained therapy dog, but nonetheless something appeals to me about the idea of a dog companion for our family.
So, as I am cruising the Internet, I find this video:
I was speechless and in tears. So much about this boy… his face, his smiles, history…reminds me of Jonathan. Not everything, mind you. I would guess that this boy’s need for a therapy dog is greater than the J-man's. Jonathan does not have the same issues. But this video and its song spoke to me. . "... the way it always was... just isn't good enough... you make me want to be Brave..." (what a wonderful song)
Being brave means doing what you need to do to help your child. Being brave means living with grief. Being brave means having every kind of hope. Being brave means being more than you thought you could be. Being brave also means loving and laughing in spite of... or maybe even because of... the frustrations you experience. I am meeting such wonderful, brave people on this journey of ours.
So, will we get a Therapy Dog? What do YOU think we should do? Most of the Therapy Dogs are quite expensive (think thousands of dollars)... and our needs right now are small. There is a local place that does some companion dogs that I am looking into. But allow me to encourage YOU to look into these organizations and consider donating a little tax-deductible coin toward the efforts. When you read some of these stories .... oiy, my heart!!
There are lots of things to update: recent Word Watch activity, our IEP meeting last week, holiday plans, etc. However, I think I will just tell a little story.
Despite his relatively calm demeanor, the J-Man is a man of action. Clearly, he was meant for parents who are willing to run with the bulls and leap tall buildings with a single bound. Alas, he got us. Much like Tiger Woods, Jonathan likes variety. He likes new and exciting diversions. He is not a “stay at home and veg” kind of kid.
Now, any parent with a language-delayed child learns early on that in order to encourage communication you have to make the kid “work” for the good stuff. They want the cool new toy? Make them say “toy” (or some approximation thereof). A cookie? A drink? A Nintendo Wii? Make’m work for it! Motivation is the key… hookm’ with their heart’s desire and they will try to do the hard stuff for the highly sought reward.
And then … there is Jonathan.
Not much motivates Jonathan enough to really, really, REALLY work for it. He has to want it pretty darn bad. Unless whatever you are asking him for is easy to do, he is likely to move on then keep trying. The list is very short of things he will work for.
So whenever we get one, we pounce, regardless of the consequences.
And this is how we have ended up driving Mr. Jonathan around every night for his “Evening Constitutional”.
Here is how it starts:
Jonathan grabs my hand and pulls me to the stairs. He sits down (2nd stair only, thank you very much) and pulls me down to the floor to sit.
On his own he says, “Coooa” (Coat)
“You want your coat?” I ask.
“Coooooa.” He looks at me expectantly.
“Why?” I ask.
“Gooooo…. By-eeee!” He states impatiently. Emphatically.
And from this point I can elicit any number of other vocalizations. Where are your shoes? Shoo (with the sign) Where is your hat? Haaa (with the sign). Where are your socks? (just the sign for socks… oh well).
But... lest we wish to witness a meltdown… we must go out. Somewhere, anywhere. Preferably the gym playland, but Target will work. And since we are trying to encourage communication and vocalizations, we are giving in to his evening demands.
I don’t mind.
I mean, let’s face it. This is practically a conversation for the J-Man!
So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:
Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!
Sigh.
I have heard comments like this before:
God picks only special parents to take care of these little angels...
I could never do what you do.... you have been chosen to a higher purpose.
God only gives people what they can handle, and you are meant to be his mommy.
These special little angels are sent here to teach us something.
Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.
Don't say crap like this. EVER AGAIN.
Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.
But this is what I hear:
Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.
Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.
I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.
Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.
Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.
In my defense, I had a long night at work the night before, was having some issues with back spasms the last few weeks and had taken a muscle relaxant (Evil Flexeril) the night before and thus had a very bad Flexeril hangover. (BTW, I hate Flexeril) In addition, the week had been long and somewhat stressful. We received Jonathan's re-evaluation from the school district, and while I am not going to go into the details today, needless to say there were many 'numbers' that made me sad. Not that he is doing poorly... actually, he is doing great! But to see how delayed he is in black and white...hard to feel good about it.
Ok, so I have had my issues with ECFE. But generally, it has been going well. However, when I walked into the parent classroom and saw the words "Language Development" written on the blackboard, I knew it was going be a quiet day for me. Since I was already feeling like ka-ka, "being quiet" wasn't going to be far from the mark anyway.
My resolve: Just keep my mouth shut. Do my best to fade into the woodwork. Find my happy place.
Yeah, right.
So, the question posed: what are your kids doing, saying, etc?
And let the brag-fest begin!
It seems petty to be jealous and upset about these things. But GEMM doesn't care. Her giant fiery head rears itself at time like these, and the throat closes, stomach acid churns, and I become an expert on the lines of my hands. Goooo to your happpyyy place..... happppy plaacee...
And then, the teacher turned to me and another 'special needs' parent and made a point of asking us what our little ones were doing. It is well known we are the 'special needs' parents, and J-man's issues are known. I was prepared. I had my script. I rattled off where we were, while aching inside because I knew... as it came out of my mouth... that it sounded bad. Real bad. But it is a script I am used to delivering and questions I had heard before. I could make it!
And then one mom asked me "And how are YOU doing with all this?"
Let the waterworks begin.
I just opened up my mouth and nothing came out. I truly didn't know what to say. No one asks me that. Not really. I just wasn't prepared. I honestly am not even sure what I said, I just teared up and mumbled something and who knows... I probably babbled. With my face in a tissue.
It just snuck up on me.
It is funny. Just when I feel like I have got it together, am working toward some level of acceptance... I find out it is just a lie I tell myself.
We had Thanksgiving at our house this year, which consisted my parents, brother, sister in law and nephew. Six adults, two kids under the age of five. A simple and (mostly) quiet holiday.
The task fell on me to prepare The Turkey. Now, for those of you who have prepared The Turkey for Thanksgiving dinner, you know this is no small task. I mean, sure, it should be simple… put turkey in oven and roast it. Ta-Da! But no, there are a myriad of pitfalls in the preparation of a turkey. First, you must thaw it, a process that takes place over a 3 day period. There is no thing as a "last minute turkey thawing”. Then there are a dozen questions to answer.... to brine or not to brine? How long to cook for maximum juicy-ness and least likelihood of salmonella poisoning? Method of cooking... grill, roast, deep fat fry? Stuffing in or stuffing out? Seasonings? The turkey is the centerpiece. The "make it or break it" part of the meal.
Juicy Turkey = Thanksgiving Perfection.
Dry or Undercooked Turkey = Complete Failure.
Can you feel the drama?
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After dinner, my mom and I were chatting. She confessed that this time of year is not her favorite... that there is too much pressure to do everything "just so".... sorta sucks the joy out of the season. And that got me thinking about the pursuit of perfection.
I think (and mayhap you agree) that many people dread the holiday season because of this pursuit of perfection. The holidays are suppose to be happy! With singing and good food, smiles and perfect presents, joyful church activities and holiday decorations. And family and friends in perfect harmony. And if you don't have those Norman Rockwell moments, something is seriously wrong with you.
The "perfect holiday" is a like a condensed example of our pursuit of the perfect life.
And to not have a "perfect holiday" is some sort of failure....
Much like not having the 'perfect life'.
Jonathan is teaching me that there is no such thing as that 'perfect life'. Not that I didn't know this before Jonathan. But the pursuit of perfection ... the possibility of having the perfect house, job, and family is still there somewhere. The illusion still beckons from the shadows. But that definition of perfection has faded in importance for me. I am trying not to care about those things anymore.
My goals are smaller now, but so much more important. My desires are simpler, and yet so much more complicated. I feel like a square peg trying to fit in a round hole, not quite knowing my place in the world where the pursuit of "perfection" seems so important. I don't fit... we don't fit... and I am not sure what that means. Or how to be apart and yet a part.
The J-Man put together a fifty piece puzzle today.
Fifty pieces.
He turns 3 in two months.
Fifty pieces!?!?
Is that normal? To be honest, ever since we started down this strange road, I have no idea what is normal anymore. To me, it just seems like 3 year old child shouldn't be able to do a 50 piece puzzle. But he does. He sits and works on it with way more patience than I would have now!
I am reading a book by Temple Grandin called Thinking in Pictures. For those of you unfamiliar with Dr. Grandin, she is an amazing woman and probably the most accomplished and well-known person with autism in the world. She has her doctorate in Animal Science and has written several books on both autism and animal behavior (no, not in the same book!). She didn't speak until she was 3 1/2 years old, and yet through her own determination and that of her family has reached levels of functioning far surpassing what anyone would have dreamed of in her generation.
In her book.... of which I must admit I am only 30 pages into... she is talking about how she (and presumably many other people with autism) are highly visual learners. In essence, she thinks in pictures, not words. So, that internal dialog that goes on in your head, or my head.... that is not how she thinks. She sees things in her head, three dimensionally, and creates associations based of memories of pictures.
One of the things she mentions is that many people with autism have this level of visual-spacial ability. Often... and I know you saw this coming... they are highly artistic or interested in design, and guess what.... they tend to be good at puzzles.
Now, while I could take this as a sign that the J-Man truly has autism, I am not really ready to go there yet. His social nature is starting to peek out, and I think we might start to see it blossom in the months to come. But, I am willing to say that undoubtedly he is a visual learner. To my core I know it. As I watch him solve the problems of a puzzle, I marvel at how focused and persistent he can be.... so very different than when the task involves language or auditory input.
The puzzle for me, now, is to find a way to harness this ability.
How many two year olds do you know who have goals?
Next month, we have Jonathan's IEP meeting. An IEP (Individualized Education Plan) is essentially a road map or 'contract' for establishing educational goals and tracking those goals. The IEP not only establishes these goals (and some kind of metric to measure those goals) but also helps establish the ways in which these goals will be met. Generally speaking, the goals are built by information on the the educational assessments previously done, and on both parental and teacher feedback on where the child is and where they need to go. The IEP is like the Bible for special education students. It guides all.
Crafting a good, quality IEP is not an easy task. It requires an understanding of the child's strengths and challenges, how they learn best, how to capitalize on those strengths and minimize the impact of the challenges on overall performance, and how to address the areas of weakness in a way that is most effective.
Parents come to the table with the Child Knowledge. We know our kids. Alas, we don't always know the best way to address the issues and implement them in the classroom. We don't always know the words to describe the subtle problems and issues, and frankly... if we could fix our 'broken' children, we would.
In a perfect world, teachers and therapists have the education and skills. They are suppose to know what to do and how to do it. And we parents look to them to help craft the perfect IEP... the IEP that will provide everything the child needs to progress... no, EXCEL!!
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Do I set expectations too high, perchance???
So with Jonathan's IEP coming up, I have started thinking about what kind of goals we should be establishing for him this next year. I have been brain storming a list of "good goals" for his IEP.... and I found that this was not an easy task! It is so hard to articulate what his goals should be in a meaningful way. It is so much easier to just say what I want....
I want him to say "Hi mommy!" when I walk in the room.
I want him to share with me his interests and show me things he likes, not just get me to do things that he needs or wants.
I want him to play with me, not just by me.
I want him to have friends. Real friends that he likes to see and wants to play with.
I want him to try and tickle me. And chase me. And chase and tickle me.
I want him to be able to use his imagination and play creatively.
We have a fairly standard bedtime ritual in our house, one that is no doubt very similar to most households. After bath and teethbrushing, we get J-man a drink of milk, read stories in the rocking chair, turn out the light and rock him a little bit and then lay him down in bed. One of these days.... no doubt soon.... we will do away with our rocking time. But, for now, it is my favorite time of day.
Tonight, after the lights went out and we snuggled together in the rocking chair for a bit, J-man started wiggling and turning (my signal that it is time to lay him down in bed). As I picked him up and started to his bed, he said... clear as day... "Bye-ie".
He told me BYE!
It both thrilled me and sent a pang into my heart. But thrilled me more.
