Summer camp; very affordable therapy time

Since the school district dumped Shea's summer school or ESY (Extended School Year), we decided to try something new.

Vashon Youth and Family Services do Chautauqua Kids program at the elementary school cafeteria. It is a nice big open space with an air hockey table, games, art projects, bike riding club and a different field trip each week. Off island even!

The program directors and teen mentors take the kids swimming 2 times a week and stick to a loose but structured day. Lots of variety, lots of supervision but not much hovering.


This was about self sufficiency and independence and doing for yourself. Sure there was help near by but Shea just got into the habit of taking care of stuff himself. A huge step for us.

This is mainly for kids whose parents work and the times are from 6:30 AM to 6:30 PM. For $180 a week, it could be perhaps the most affordable day care set up around.

And, I am so glad we tried it! I considered it intensive social and behavior therapy and WOW! did it work.

We were tentative at first but Shea zoomed and soared with the structured fluidity, friend making, playing with the big kids and generally just having a great time.

The program directors were extremely sensitive to Shea's allergies and his speech issues. I just feel like I struck gold. So much so that I signed him up for several more weeks and ended the summer fully in love with the program.

When school got out in June, I was nervous about 1st grade. I thought it could go either way and was poised to worry. But now, after all the growth and talking and socializing and resolving issues this summer, I feel that Shea is really ready to go for 1st grade and give it his darndest!

Thanks VYFS and Chautauqua Kids! You made our summer!

Special mommy lunch; sanity over tomato soup

I have said it so many time that I am a broken record. But since I have your attention, I will say it again. Connecting with other parents of kids with special needs makes all the difference. Not all THE difference. ALL THE DIFFERENCE!

It has taken awhile but I have finally pulled together my special mommy posse and we had lunch together yesterday at a local restaurant.

You know how it goes, its that table over there that will not turn over, been there all afternoon not having desert, talking, talking, talking and getting their glasses filled and refilled with water.

Sounds annoying perhaps but it was so nice and so needed. I recommend it to everyone!

I feel lucky to have found them and spending the afternoon listening to the play by play of each of their stories about their child's IEP meeting reminded me that no matter how isolated we feel, there are others out there feeling the same way.

The trick is finding them.

It took a while. Our kids do not really know each other, being years, grades and genders apart. But we speak the same language. I always learn so much and am fortified and reinforced by them, the stories, the passion and the pain.

We are devoted cheering squads for the good news and, yes, there is always good news. And, we are the dedicated backup fighters quick to take sides strongly with our posse member against all comers. The school district. Teachers that don't get or are too tired/lazy/indifferent to practice inclusion. Parents that shun. Kids that exclude.

All of the above got our well deserved wrath yesterday. Happily, joyously we had the special - perspective and I could probably eat it every single day if it was possible.

Thank you ladies. My feeble words could never completely explain how important that was to me.

On keeping the communication flowing....

I haven't heard a peep from the teachers since the fall conference where we were told (again) that he was having a tough time at Kindergarten recess. You know, the one with 50+ running and screaming all over the place. It seems he gets a little over excited. (really?) and can't keep him hands to himself.

But I hadn't heard anything so I sent this e-mail to prompt an update.

"Hi there, Could I just get a brief update on how Shea is doing out at recess? Is he still hitting and terrorizing the others kids when he is getting over excited? Or have things mellowed some? Please let me know so we can help reinforce the appropriate play behavior when we talk about it at home. Thanks so much!"

Sent mid-day, I had not gotten a reply by the time I picked him up at school for OT. "Hi mom!" he says and promptly bursts into tears. This never happens. This is not at all normal. I try to get him to tell me what is up. All he can really spit out is that his pal keeps on calling him "Dude" which has been their game for about 2 years now.

I asked him if he had fun at recess and he told me he had to sit out. Uh oh...

I get this e-mail from Kindergarten teacher with an add on from the aide the next day in response:

"Thanks for your email. As I am not at recess with Shea, I forwarded your email to J ...the following is her reply. Hope this information helps...thanks for continued support at home."
"Shea is still requiring frequent prompts about not grabbing other students. This applies to both recess and line behavior. Shea seems to have relatively lengthy stretches of time (4-7 days) where his behavior on the playground is mostly age appropriate punctuated by several days of difficult behavior. He requires frequent time outs on those days. I have been asking students to use deliberate "stop (fill in the blank with the unwanted behavior)" when Shea is getting too grabby. Shea then is prompted to apologize. He is compliant. In comparison to the beginning of the year, Shea is on a positive behavioral track but, again, still needs frequent reminders about keeping his hands and body to himself, both in line and at recess. We continue to work on this behavior."

Shit!

I reply:

"Thanks, you guys. I am not sure how or if we can do this but I think it would be helpful for us to know when his tough time is occurring so that he will loose privileges at home if it continues. Would it be possible to just get a quick e-mail when he is getting in trouble so that we can talk about it at home with him sooner rather than later? Obviously he is not telling us about any of this. Sorry to add more work but I think that would help because we do not know when it is happening, he is thinking he can get away with it. Let me know if that is possible. Also, yesterday when I picked him up for OT, he burst into tears. Which is so rare that it has NEVER happened before. I couldn't really get a straight answer but something about X calling him "Dude" which has been their running joke for 2 years and hardly an insult or teasing. Still not sure what happened. I asked him if he had a good recess and he said that he sat out. I was always pretty nervous of that recess time, knowing it was going to be a bit too much for him. If it really isn't working out and significant progress isn't being made, I guess I would rather try something else for the 2nd half of the year. Thanks for all you do."

Then I got a better e-mail from his IEP case manager:

"So, a new plan is for me to email you every couple days/week to let you know "how it's going" on the playground. Just a reminder that this "grabby" behavior is never considered to be malicious. He really gets so excited! He is able to tell J what he "did" every single time. Reinforcing the preventative strategies have helped. As agreed, if we are able to catch him as he is winding up...Jennifer intervenes and practices the steps towards "reorganizing". He and I practice facial cues." Show me a happy face." "This is a grumpy face. If your friend shows you this, do you think he likes what you are doing?" He has made significant improvement as compared to this time last year, and even as compared to the beginning of the school year. He leaves the playground appropriately when recess is over and listens to redirection and complies with time out requests. As you suggested, the toys in his pockets help him reorganize when he does have to sit for a few minutes. There are usually one or two little Kindergarten buddies needing to sit and reorganize at recess for a few minutes. The frequency of these instances for him as Jennifer are sporadic, cyclical and decreasing in intensity. Shannon reports incidences during preschool recess as much more rare. I was absent yesterday, but X, Shea and I can try to figure out what is going on with the "dude" game."

Now, that sounds better. And, in which I respond:

"Thank you so much, K! I am glad that you guys have a strategy and he seems to be responding and improving. I am also relieved to know that he isn't necessarily the only kid who has to sit out sometimes. Whew... But please let me know if you feel home reinforcement would benefit. A little talk about not getting to play his DS because he was naughty is incredibly powerful with him. So, feel free to use that stick or cue me! Thanks again for all your quick responses. All in all, I think it is going really well. I just feel sort of out of the loop."

Sometimes its hard to push for the information you want and it can be intimidating at times. But just keep at it. Know your rights. Know your kid's rights. Be an advocate.

If you inquire with tact, kindness and genuine appreciation, they will (usually) respond accordingly.

Also, it is not a bad idea to do the Special Ed correspondence in e-mail. Not only for the reason that you can quickly make it into a blog post but you have documentation and you can sound a little less emotional. The worst encounters I have ever had was when I was talking directly on the phone with the teacher. Some things I never would have written slipped out, never to be retrieved again. And, in a system that documents everything in the IEP form, having it all out in writing with a date on it, is mighty good.

But keep your cool folks. Let's remember MOST of the people who work with kids with special needs are wonderful, caring people who are doing this job for the best of reasons. Be extremely taciturn about escalating because these folks have your kid under their thumb on a daily basis. If you feel that you might have too much of an edge to your correspondence - STOP - pull back. Either send it to a calm friend to proof read and/or sleep on it. Sometimes after I have slept on it and re-read it, I can barely believe it was me that wrote it!

Rough patch

Shea got into trouble today at school. Something about hitting or bugging the other kids? It wasn't quite clear and I, of course, wasn't there at the time but I can imagine.

His teacher came out to have one of those heart to heart talks with Shea and I just as I picked him up. Shea must've just been pulled for a time out or something because he was in full crying, melt down mode. Not a common thing which makes me think he was pretty tired or maybe could be getting a little sick.

"I think Shea was playing at being a fierce tiger or dinosaur or something and was growling and pretending to claw at the other kids. Some of them did not want to play that way and told him so but Shea would not stop."

I said, "Oh. So you were bugging the other kids, Shea? Did someone pop you in the nose to make you stop?"

Teacher was horrified, "No, no, no! Nothing like that." I never really did find out the full story of what really happened because meanwhile Shea is still sobbing and really beginning to work us over. In this situation, my strategy is to move on to something else, change the scene, transition to something else. But, he was still worked up and hit me as I was getting his stuff to go.

The teacher kept apologizing. I am not sure why. I guess she was sorry that I had to pick up a crying kid. Hey, everyone has their moments; Shea included.

But, this is an example of something that has brewing for a while and I can't quite put my finger on it. Part of it has to do with the way Shea and Molly play together which is very physical. They wrestle and tickle and hug and jump on each other. This, of course, does not work with the other kids. Other than yelling myself hoarse anytime Molly and Shea play rough, I don't know how to change the dynamic. I mean, they love each other to distraction and frankly they should be able to play with each other the way they like to. Within reason, right?

But, then again, how does a kid like Shea learn appropriate social dynamics when Molly is throwing conflicting cues into the mix all the time? Don't get me wrong, this is not Molly's fault but I do wish there was a way to help her see that she is teaching him how to interact with the world. And, those lessons may be making it harder for him to get along.

Another part of this is his Sensory Integration issue which makes him very excitable and frustrated in crowds. He gets really worked up and, of course, can't communicate at the pace or volume as anyone around him. Sometimes he just stops trying and hits the wall. I have seen him strike out from pure frustration; everything is moving too fast for him and he doesn't know how to cope.

Sometimes Shea's progress seems dazzling and I am filled with hope and enthusiasm for the future. And, then sometimes just a little thing like "don't hit" derails all the optimism and shoots me down a road of worry, concern and pessimistic thoughts.

There really isn't anything else to do but soldier on. Some days are better than others.

Siblings of special needs kids

I remember on Molly's first day of 4th grade, her wonderfully creative teacher gave each of the children an old fashioned key. As a first day ice-breaker assignment they were to write about what that key would unlock. Understandably, there were a wide variety of ideas and the kids all got a chance to stand up and read theirs if they wanted.

Molly's key, she told the class, was to open up her brother's power of speech. She told a little about how talking was very hard for him and that we were all working very hard to help him.

Well, I can't even write this story without tearing up again. And, it's been over a year!

First, I think it is testament to the kind of kid Molly is; compassionate, empathetic and thoughtful. But I also think it is very illustrative to how siblings of specials kids commonly feel. They, somehow, want to make it better for so many reasons; to help their parents, to help their sibling and to make it easier on themselves. Let's me honest, a lot lands in the laps of these kids.

I recently heard about a program called Sibshops.

"Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities. The Sibshop curriculum is used throughout the United States, Canada, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Mexico, and Argentina."

For a long time I have been feeling that Molly could use something like this. I don't want to make a big deal about it but I think it would be a fun environment to share some feelings and thoughts about having a brother with special needs. And, now that I am writing this, I think I am going to look for some activities nearby.

To blog or not to blog, that is the question

Where do the words come from? Do they spring fully formed from our heads? Is is slow, arduous or creatively constipated? Or do the words spill, wash then overflow?

For me, all of the above. I didn't really know what it was going to be like when I began my blog and I was mighty nervous when I first hit that "Publish Post" button. Since then, it has gotten easier, faster, more cathartic than I even thought it would.

But, let's remember, this is SELF publishing, stream of consciousness to the Nth degree. These posts never get run through an editors sieve and have the choppy intellectual jumps of a journal. This blog is a tribute to self absorbed focus; all about me and mine. One doesn't apologize for this, it just is that way.

I write about what is bothering me or what makes me happy. I write about stuff that strikes me as odd or just rattles around in my head for too long and needs to get out. I write about sad, scary feelings that are hard to express even to my GGF. And, I write about victory and triumph. In a word, it's a mixed bag and not always pretty.

Do I sometimes go too far with my opinion? Definately. Do I sometimes beat it to death? Perhaps. Do I take too much of my life and smear it liberally in my blog? I am afraid so.

I have always been a passionate, opinionated person. Old habits die hard. And, part of the attraction of blogging is the assumed anonymity. Sure, friends and family read my blog, bless their hearts. I expect they are the majority of the hit count. But I like to think about the people I will never know or meet who stumble upon my blog and stay to read a bit.

If I have offended or ticked off anyone, near or far, with my over the top rhetoric, I apologize. I am not always politically correct. For this I appreciate your understanding. But, I promise that I will always be real.

"By...my...self..." Shea insists often.

Shea's really working on the old independent spirit thing these days. Actually, it's nice to see. He still wants me to do plenty for him but he wants to decide what and when for himself.

You know, normal kid stuff.

In the past, if he even tried using his words, I tended to honor the request just to support the attempt. But, like any kid, Shea will say "cookie" all day if allowed. So, to keep it all in check we need to re-evaluate periodically.

Last week he got into a little scuffle at school. I asked him what happened, he said in that stilted, deliberate way of his, "Hit him." Oh boy! A+ for honesty but a D- for hitting.

"Hitting is never ok, Shea." I predictably repeat, way too many times. I worry if his frustration level is rising or things just got out of hand this one time. Without being a fly on the wall, it is really hard to know.

Up until recently, he has always been such an even tempered kid. I remember starting with Bubble Lady when he was three and there was not a hint of the contrary kid. I pointed this out to her but in her wisdom she predicted that it would probably appear...eventually. Of course she was right. With a vengeance.

Shea won't throw full scale tantrums usually but will be contrary just for the sake of contrariness. Or as they say, oppositional behavior. This plays out about 400 times a day with his sister. I hear he is a little better behaved with other kids at school, thankfully.

I expect this is just normal kid stuff and he will work through it eventually. But, I am aware that Shea is on his own schedule and may need to be reminded again and again about certain social lessons.

No hitting is a real big one.

School: when it isn't going well, Part 2

Communication is obviously the key to any relationship. So, when my non-verbal kid started school, one of my biggest worries was he wasn't going to be able to tell me if he didn't like it. Or if he had a problem with a teacher or another kid. I still worry about stuff like that but because Shea is in a Developmental Preschool you would think that the teacher would be sensitive to that issue.

Lesson learned; even though it should be true doesn't mean that it always ends up that way.

I found out Shea was having some problems in school by accident. His teacher described his usual classroom behavior as: anxious, stressed, threatening, angry and that he was "attacking" other students. These characteristics were described in a multiple choice questionnaire that the UW CHDD wanted his teacher to fill out before our full neuro-developmental screen last Spring.

When I got it back from the teacher, I was stunned. There was no explanation attached, no note saying please call if I had any questions, etc. It just seemed odd. I barely recognized my kid from her description.

I sort of sat on it for a while but grew more and more upset and concerned. I gave copies to our private specialists which is when my head popped off my body! Both, OT and Speech Pathologist were equally concerned with the behaviors described and asked for more detail. The UW CHDD was surprised and quizzical about the teacher's questionnaire because it didn't seem to jive with what they were seeing from Shea either.

I figured it was time to ask the teacher directly but I always wonder about the best way to approach a teacher on delicate issues. In writing? So that you can edit, re-edit and make sure you do not offend plus document the issue all in one fell swoop? Or in person, face to face? Over the phone? What really is the best way to do it? I still don't know.

In this case, I called the teacher and asked her point blank. I didn't go very well. She was defensive and dismissive. I suggested it was time to have the IEP review, she suggested bringing in administration staff. Oh boy! This sure mushroomed fast.

So much of life is posturing, this situation was no different. I remember going to the meeting with Jake and there were 6 or 7 to our 2. It would be pretty normal to feel intimidated or out numbered in a situation like that. Oh, and it was plenty uncomfortable but I have a trick to share. Bring a tape recorder. It doesn't really even have to work although if things get really contentious, I bet you would be glad to have the conversation documented. At the beginning of the meeting, quietly whip out the recorder, hit play and set it down in the middle of the meeting table and watch the mood change.

Another good strategy is to go to the meeting with suggestions, so you aren't just complaining but offering solutions too. My suggestions were; I wanted a different teacher for Shea the next year and I wanted consistent communication from his current teacher for the remaining of the year. I suggested that I would put a spiral notebook in his backpack and if any of this "angry, threatening" behavior occurred they were to document the situation in context so that I could reinforce appropriate behavior at home. The administration did not like me dictating his placement but they made sure it happened.

And, what ever happened to all that weird, scary behavior that I had never seen before? The teacher never mentioned or documented any additional occurrences. Am I to guess it sort of just "went away"? Good question.

Underneath is all, I think the teacher and Shea just didn't click. Maybe he was a lot more work than the other kids or they didn't particularly like each other. I am realistic. This will happen. But, any teacher still needs to hold to appropriate standards and practices. If they don't, it your right and responsibility as the parent to call them on it.

Call it parental advocacy. Call it squeaky wheel. Call it what you want but no one else will do it for your kid. After all, you are the expert on your child, sometimes you have to be aggressive.

What is it about bunk beds?

I can't think of anything else that gets an almost universal positive reaction from a kid like bunk beds. Suddenly bed is not only cozy and snuggly but super-duper elevated fun!

My GGF (Good Girl Friend) recently upgraded her bunk bed system for her son and had a starter set up for grabs. My husband would say that I have an uncanny ability to acquire stuff but in this case we could really use it. And, the price was right.

They brought it over while I scoured the IKEA website for assembly instructions. By the way, who knew they had all the instructions on-line to download? I didn't! What a brilliant idea.

Anyway, despite the instructions, they both took pity on me and actually set it up for me too! Kudos goes to Mark, my GGF's very pleasant and helpful husband. Shea assisted as well, to the extent that he could which was mainly staying out of the way most of the time.

And, voila! Bunk beds; perfect for a little prince. It goes without saying what any kid would choose when asked, "Do you want to sleep on the top or the bottom?" "Top" Shea immediately answered. The top, of course! Why would there be a ladder if I was going to sleep on the top? Shea did not say that but was probably thinking it.

We set up the top bunk for eventual slumber and the bottom is a full time fort. We stuffed it with comfy pillows and hung some fabric for curtain/walls so it feels like a separate little room. He didn't want to be anywhere else in the house for a good solid week but now he is getting used to it.

He does sleep up top mostly but likes to toss it up a bit depending on his mood. All in all a pretty inexpensive and fun room face-lift. And, a real shot in the arm to a kid who tends to always be in big sister's shadow.

Now she is jealous of his bed which gives him a little bargaining power.

Mommy guilt or battling the many headed Hydra

"I wonder if my egg was too old?" I remember actually saying this several times and thinking it many. How could anyone not be just a little bit horrified to hear a mother say that. Oh, they were, I am sure of it.

Mommy guilt is a natural part of motherhood. I say motherhood because I don't think fathers bludgeon themselves to the extent that mothers do. Maybe I am wrong but it always seems fathers are just a bit more pragmatic about parenting.

I would describe it as tap dancing through a mine field. When you least expect it; Pow! I wonder if I breast fed long enough? Pow! Maybe I didn't sing to him enough as an infant? Pow! Is he getting enough; food, time, therapy? Pow! It's a no-win war with your own worst enemy and there is no winner in sight.

I think that if your child has special issues, you tend to beat yourself up even more. Maybe it's because it's really one of the only things you can do. Not being able to "make your kid ok" is the hardest, most vulnerable feeling in the world. Being out of control, not being in charge is excruciating for many of us. At least with mommy guilt, we apply the pressure ourselves even if it can be unfairly placed, anxiety provoking and many times irrational.

I feel guilty about Shea all the time. As I try to give voice to the worry it seems flimsy and unsubstantial. Yet, when I wake up in the middle of the night unable to sleep, the guilt is black, deep and amorphous as storm clouds. During the day, guilt is an annoying mosquito; never far from my ear yet easier to ignore as you go about the tasks and duties of life.

I am from the generation that felt like we could have it all. The first generation of girls who grew up with Woman's Lib as a done deal. We didn't have to burn our bras or do epic battle with the status quo but we saw our mothers, teachers, aunts and heroes do it. They did it so we didn't have to, right? Tail end of the boomers; we knew we could have careers, interests, lovers, a full rich life before we settled down to motherhood. Oh, and we did; those were the days my friend. We were the ones that put off babies until later and later in life. Look at me; Molly came when I was 34, Shea when I was 39. We didn't think anything about it. It wasn't odd; in fact it was considered modern, wise, the smart way to do it.

And, yes, there is some wisdom to this. Older parents tend to be more relaxed, financially and emotionally stable. But, there are down sides, of course. And, maybe this is where the guilt comes back into it.

There is something a little wacky about having children during the classic mid-life crisis years. What we we thinking? Or having them so near Menopause. Again, what were we thinking? Then there is just the physical demands. Parenthood is exhausting; even more so if you have some years under your belt. Yes, we are more emotionally stable but maybe we are too thoughtful at times, too circumspect after seeing all we have seen. Dare I say too controlling, set in our ways? Plus, there is the reality of time. I will probably be an old, old lady (if I am lucky enough to still be around) by the time Molly and Shea have children. I probably won't have the luxury of being the spry, springy Grandma like my mom.

So, unfortunately I don't have a silver bullet for this particular beast. I sure wish I did; I would make a fortune. What to do? Get some exercise so that sleep comes easier. Cultivate a small select garden of good girlfriends who will listen and bring you back down to earth. Listen to your husband when he says, "Don't worry, honey." Love your kids, try to be a little kinder to yourself and count your blessings.

Why we do it

I know it's been a little heavy so far so I thought I would lighten it up a bit with a reminder of why we do what we do.

So, let's take some time to focus on what is really important; the kids.

Shea is so sunny; easy going and naturally generous. He possesses the innate wonder of a curious of mind. He loves his family, his cats and the comfort of home. School pals, especially best buddy Gordon, have a very special place in his days. Athough his verbal challenges can be very frustrating for him, tantrums don't last very long and his happy nature comes back almost immediately making him a favorite with all who know him.

We love him as he is, hope for a bright and beautiful future and will do ANYTHING we need to do to get him there.

Good golly miss Molly!

First let me say, despite the teasing, bugging, and incessant pestering, she really is the best big sister Shea could ever want. She is viciously loyal and protective. She is his most ardent teacher and devoted playmate.

She has a sense of justice with an honesty barometer that makes us marvel. She still possesses a guilelessness that makes me afraid sometimes. But with her strong wit and sense of self, she tends to throw the plodders off balance. She enjoys a sharp yet empathic intellect that makes me wonder just how far she will go. As far as she wants to, is our hope. She is our first born and there will never be anyone like her.

Parents, as you all know, are never objective about their own. My truly hilarious cousin-in-law Mike said once, "Why are our kids so much more interesting than any one elses?" How true.

I have heard it takes multiple generations to raise a well rounded child. My kids are lucky. My mom has been poised to be a rock solid grandmother since before the egg split. She takes adoring grand mothering very seriously and has set a new high water mark for our family. Beloved Grampa John sets a new standard for grampas in our family as well and treasures each hug and smooch. He is appreciated for his humor, sense of fun and good graces. Bless you both.

All the above pictures are from our wonderful trip to visit John & Ruth in their super terrific Hawaii beach house last Feb. 08. Lucky us!

In the beginning....

This is my first blog entry...ever. So, lets see if I can figure this out.

What do I want to accomplish with this blog?

1. Tell Shea's story
2. Connect
3. Give hope
4. Not over think what I share; just share.

Thanks. Ok, here goes...