Mamazen

IFSP WTF?

Today we had and IFSP (Individual Family Service Plan) meeting for Ruby. We met with her community preschool teacher, her service coordinator, her other preschool teacher and the speech and occupational therapists (that haven't had time to work with ru yet, since it was a short summer session, and she was sick all last week.) 

Unfortunately the meeting started with a bomb. They are closing the program at Edwards Elementary, and all of these kids are being shuffled around. WTF? It feels like every time we turn around, we get told "well we're changing the program" or "people are being shuffled around". I knew going into the educational system with a special needs kid would mean I was going to have to stand my ground, be an advocate and occasionally get loud, but from day one? I feel like I've already had to fight for services (speech and occupational therapy) that never really materialized in the end anyway. I feel like I've already had to stand up to 'specialist' who weren't stopping to hear and see who and what we are about before trying to 'help' my kid. 

In the end, this past year has been a HUGE growth year for Ru, her language has expanded (mostly because I paid a ton of money for speech therapy, and our insurance for all adjunctive therapies ran out in June) her social skills have increased tenfold, she's learning how to play with friends, how to communicate her needs and how to get her needs met. How much of this is due to the 'services' we've received from PPS? I can't say much, but I'm not completely ready to give up on them. Shit, I pay my taxes and would like to see some sort of benefit come from what the public system is supposed to offer my child with a disability.

One of our choices is to go back to the class from hell or check out another classroom at Lewis Elementary which is a k-5 and from what i was told, the preschool classroom is run by a much different teacher than H is at Edwards. The reason Edwards worked was because it was small, quiet, contained, perfect for kids with sensory and special needs. Putting her into a bustling school with BIG kids running around? NOT READY. Our service coordinator (MB) who's worked with Ruby for a year, and has seen Ruby in action at our community preschool (MVCS) and who knows me and what I will and won't like, made it pretty clear that she didn't think I'd like the other teacher/classroom, that it was much more restrictive. Clearly, not really an option. (also, they start at 8 am. too effing early)

Our other option is to choose community placement (ie: have her at MVCS) and have H and the speech and OT come to Ruby. Because of the changes they are making to the program this year (i am guessing they change stuff constantly, cause last summer during the eval part, the evaluators  seemed to have no clue what was really going to happen after the eval, just that ruby would qualify for services. Shit, it seems like no one really knows who is scratching who's ass in this whole effed up system) they will offer much more to kids in community placement. Apparently the goal is to move kids into community schools and have all services come to them. Is this better? maybe? but guess what? You have to pay out of pocket for a community school. The program at Edwards was a class that (because Ruby qualified) didn't cost us anything. 

So what? you say... ruby is already in a community school, we were already paying for it, what is the difference? Well, the difference is that in the past few weeks, having school or class every day, has been brilliant for ruby. Mornings have been a breeze, 4 days a week we get up, have some quiet time around the house and bustle off to class. Like every other kid on the spectrum, she seems to thrive on a routine and a regular schedule. So... if we don't choose the Lewis program, and we do want to have her in class 4 days a week, I have to find and pay for another preschool program. Of course this second program will be short, like 2 hours just to give her ample opportunity at social skill practice and interaction with other kids/adults. On top of this, we're also hiring a (fabulous!) professional to intern at MVCS and then to spend 3-4 hours a week one on one with Ruby on the afternoon that I see patients. AND, we're out of insurance money to cover speech therapy, so when we return to it in august, every penny has to come out of our pockets, and occupational therapy? ante up, buddy, cause we're paying for that too. 

In the end, I feel like this plan will work out, assuming we find another fabulous preschool that has an opening for 2 mornings a week and that I start shooting money out of my ass. I'll get to work on that. 

49 months

My Dear Ruby 

A few days ago you turned 49 months old. I didn't get to writing your monthly letter cause we've had a rough week. You've been sick with impetigo (a mild, and common bacterial infection that kids pass around) and haven't been able to get out much, and you've been pretty crabby and uncomfortable. I've not been feeling my happy mama self either, so mostly we just get through the days. 

Ruby and Grandpa at a zoo trip earlier this month
 
 I'll be honest, it's been rough around here  lately my sweet monkey. You're clearly gearing up for a developmental leap because you're having a lot of trouble getting your words out and you've been doing a lot of 'stimming' behaviors. By this I mean, you're toe walking a lot, you put a lot of things in your mouth and your language is challenged. You seem to be in constant aimless motion unless we keep you directed, so we're all pretty tired. 

I've found that you really seem to think and learn better with music. A lot of kids like you seem to think in pictures, and maybe you do, but I truly think you think in music. If you're having trouble engaging in a task, or you're frustrated with me, I can sing you a little tune about what we're doing or need to do and most of the time you latch right on to what is going on and you can get on board. It's a relatively new revelation for me and I'm trying to employ it as much as possible. You also love music so much, playing it, hearing it, listening to other people play. It's truly such a joy for all of us.  

 

You may be having a tough time, but still, each day is filled with joy and laughter. I think I've laughed harder at your silliness during this challenging week than I had in a while. Maybe you've been funnier, maybe we just needed a laugh, but whatever, the laughter is powerful medicine. 

 

Strangely this week you've not wanted anything to do with going swimming, much to your father and my dismay since it's been in the 90s the past few days. I have no doubt that you'll go back to being a water loving kid, but for some reason, whatever is processing in your brain, it wants nothing to do with the power of water. And so, we keep working, keep waiting to see what happens next.

 

My dear sweet girl, no matter how hard these days are, any day with you is still better than a day without. It's true what they say about parenting 'the days are long but the years are short'. Somedays it seems like an eternity till bedtime arrives, and then the next thing I know you're 49 months old. You are by far my favorite person to wake up to and to spend my days with, even when the days kick my butt. Let's just hope tomorrow is a good one. 

All my love, Mama 

 
 

Reminder

A blog post is only a snippet of my day, my week, my feelings. I share it because it's the truth, good or bad. I've gotten the impression that some people read a rough post and assume that there is no joy, no happiness, no pleasure.
No, quite the contrary. My life is made up of mostly joy, mostly pleasure, mostly happiness. Pain just makes for better writing. If all I ever wrote about was the joy, you'd get the wrong impression about life with infertility and autism.
Just remember, amidst these post of pain and frustration, there's actually twice as many about the good stuff. I'm not on the edge of sanity, I'm not miserable in my life, I just tell the whole truth.

Trust and Anxiety

As a (relatively) new sufferer of anxiety, I can tell you it sucks. I started having anxiety last year after our first failed IVF (a frozen one) of the year and assumed it was from the hormones and crazy making drugs. Sadly, it was not because it stuck with me all year, culminating in a complete loss of sanity whilst doing our 3rd (and final) IVF of the year. All of it was happening while we were trying to suss out what was going on with Ruby, and while we were getting her autism diagnosis. After I started therapy, it seemed to abate a little, and then just this week... WHAM it's back. Almost constant feeling of panic, dread, inability to take a deep breath and focus. I'm not hungry and then I'm starving. I can't fall asleep, and will wake up randomly in a state of complete panic. It sucks, I tell you. 

Wanna know what sucks more? Seeing your 4 year old have anxiety. As an adult I can mask my feelings and no one in the room knows what I'm feeling but she doesn't have the ability or desire to do that, nor should she.  Ruby's had anxious moments like any kid her age, but seeing her truly panic, begging 'it's time to go home, it's time to go home' when my only answer can be "almost, it's almost time to go home, my sweet" is incredibly heartbreaking. When we were at the bad classroom she was clearly anxious, and I didn't just leave, even though I also felt bad being there. Part of me feels like I lost her trust in that moment. Usually when she's clear with her language I do what I can to get her what she's asking for, in one way or another. But in that moment, I didn't. I spent the entire 2 hours  telling her it would be ok and that we were going to have fun, that she would love it, but what she was crying and screaming and yelling at me was that she wasn't ok, that she wasn't having fun and that she hated it. And I didn't listen to her. 

Now this week, she's been not feeling well, and both days she went to class she left in tears. One of them she lasted 45 minutes and the other I stayed by her side trying to get her comfortable.  Today I took her to the doctor and although the doctor (whom I adore) was soft, and kind and gentle, Ruby was immediately anxious and cried "it's time to go home" over and over, only allowing the doc to take a peek at her after she'd exhausted herself in my arms. She practically fell asleep on the 5 minute drive home from the doctors office, and only pepped up after some raspberry sorbet and a bit of alone time in her favorite snuggle spot. 

I truly feel I've lost some of her trust and am going to have to work my way back into her believing that I'm doing what is best for her. I have a feeling I'll be spending the rest of the summer in class with her showing her that H, B and A are wonderful and that the classroom is fun and safe. Seeing her panic and run for the door, the same feelings I have, completely breaks my heart. I've lost the trust of my favorite person, and now I have to gain it back. Sometimes it's hard to be a mama. 

Blindside

You think you'll see it, right before it hits you, but you can't because it's on your blindside. You think you're prepared, but then *wham* right in the kisser and you don't know what hit you... only you do. 

Sometimes it's the surprise pregnancy announcement even though you knew that they were trying. Sometimes it's not the first announcement, but the second or third in a week that knock you down. You know people are going to get pregnant, whether or not they try. People are going to continue to reproduce and you probably won't again. You know this, but it still kicks your ass.

Sometimes it's the well meaning comment about how well your special needs child is doing, even though it's true. Your wonderful and loving, and supportive friend tells you how awesome it is to see your child doing/saying/reacting something and although you want to feel elated and overjoyed, you feel it's just another stark reminder how different your child is. 

Sometimes it's the random happy 'hey my kid just did this!' facebook update. No matter how hard you try, your friends kids are going to continue to progress at a rate far faster than yours. No amount of therapy (hers or yours) is going to change the fact that your child has autism, and will always be different. 

Sometimes it's a crappy night of sleep that puts your 'things are going so well' theory back on the shelf and makes you reach for that second cup pot of coffee. Just when you think things are moving forward, your kid gets sick and sleep goes in the shitter, and you go straight to the crazy house.

Sometimes it's having to explain to the fourth person in a row that no, she won't answer your question about what her name is or how old she is because she can't. When you get used to being in your happy safe bubble of people who understand your situation, it's a stark reality to walk into a building and have to tell every other professional that your child has autism. 

The worst is when all of these things converge upon you when you're clearly having PMS anxiety and your kid has a cold. Infertility sucks ass, but autism sucks more fucking ass than infertility, any day of the week. 

*disclaimer* this isn't about you. If you're newly pregnant (and several of you are) or your kid learned how to speak her fourth language by the age of 7 months, or if you recently said something kind and loving to me... it's not about you. Keep on getting pregnant, I'll still be here, being bitter and unpregnant and sad. It's not about you. Keep on telling me about how your kid can shoot stars out of his ass, and how she can spell xylophone backwards in her sleep, I'll still be here trying my best to get my kid to use three word sentences on a regular basis. It's not about you.  And by all means, please  keep telling me that you notice the advances my child is making, because that means you're noticing her, not pretending she doesn't exist or that she's a nuisance or someone to take pity on. Please keep telling me that you love her, and that her smile brings you joy, because she's awesome and amazing and perfect with all of her tiny, yet glaring imperfections. Because, it's not about you. 

Now that's more like it.

Today we visited what will be Ruby's (second) preschool home. To preface, we're incredibly happy with the care and learning she's getting at MVCS, but wanted to supplement it with a slightly (key word) more restrictive environment with specialists that work one on one with special needs kids to see if it would be beneficial to Ruby. Last weeks experience left me nervous to say the least. Just the phone messages and short conversations with and about this different teacher and classroom made me moderately hopeful, but to be honest, I went today with reservations and prepared to walk out at a moments notice. 

We arrived halfway through the preschool session (2hr15min) to an empty classroom. Immediately it looked like a place kids were welcome. The lights were dim, but a full wall of windows kept the room somewhat bright and there was quiet music playing in the carpeted (and lots of beanbags!) area. Ruby went straight for some dinosaurs that were left on the ground where clearly someone had been playing freely and started to explore the area. A few moments later the teacher (H) came in (she knew about what time we were coming) to let me know they were in the gym and we could join them. I chose to keep ruby in the classroom playing since they were coming back in soon. I immediately liked H, as she was kind, and respectful of Ruby's needs and gave us the space to get comfortable. I asked her if she knew about our previous experience, and she said she'd been given an update. I told her I was anxious, and she said "I would be too, we'll try to make this comfortable". Whew. 

She went to get the rest of the class while Ruby and I made pizza in the play kitchen and soon after the room started filling with calm and happy kids of every persuasion. Seriously, this was a completely different place than last weeks experience. There were no 'off limits' toys, no one physically directing children to do things they don't want to do and no stern voices making kids (and me) feel anxious and demeaned. The other teachers (B a tall dude with curly hair... and a guitar! and A a sweet woman with a soft voice and kind smile) helped the kids slowly filter in, allowing those that needed to one last run down the hallway or stop at the fountain. The room felt respectful and joyous and calm (well as calm as preschool can be). There was some free play, and then snack time. Snack was fresh fruit, crackers and raisins and the kids were allowed to eat as quickly or slowly as they pleased. Some chose not to snack and instead went for the painting project that was set up, or toys in one of the play areas. 

After snack most kids continued painting (which ruby chose not to do, surprisingly enough) and Ruby and I explored the room some more. She played some instruments, checked out some bouncy pillows, drew on one of the many easels and then settled in with some magnetic blocks while another child fed us pretend tastes of something delicious. When there was an argument over a toy near us, B came and gently, respectfully redirected the kids to different things. 

Soon after that, the kids were invited to join circle time and B brought a guitar and started singing a song about a tree (that I think ruby must know from school) and Ruby was entranced.  Then they had 'show me your moves' time when each kid could volunteer to show off some dance moves. H pointed out that there were new people in the class, and they all said "HI RUBY!" but she declined a chance to dance (which was not a surprise). There was some more music, then we all went out to play on the playground. 

The parents were picking up on the playground that day so I got to chat with a couple of them, and they were all clearly happy with their experience at H's classroom. This was also where my one negative experience was. A mother came to pick up her 2 kids and one of them said "M (a kid clearly on the spectrum) bit me again!" and the mother said "M sure does like to bite. he's mean, stay away from him." (as a mom of a spectrum kid, this makes me cringe. M isn't mean, he's just learning how to communicate and how to function in and with the world around him. telling your kid to stay away from him doesn't help anyone, a little compassion, please) 

Then Ru and I spent about 45 minutes sitting with H, B, A and the speech therapist (all who know our private ST and adore her) talking about ruby's plans and what they recommended. Because ruby was supposed to have 2 days of preschool with 2 hours of one on one intervention after... and because of the way their one on one intervention works, we're doing 2 mornings of preschool and one afternoon. The afternoon class is super small, so she'll get a lot more chances for one on one, with the added benefit of extra social learning. 

Don't get me wrong. I'm nervous. We'll have some sort of school obligation 5 days a week till the middle of august, although two of those days we'll be free at 11:15 am and one at 1:30 pm. There will still be ample opportunity for swim parties and zoo dates and park lunches. This class and this teacher seem like the perfect compliment to the awesome school experience ruby is already getting. It could be absolutely wonderful... but I'm keeping my guard up, just a little. :)

Compared to yesterday....

Today was pure heaven. 

Other than the fact that Ru woke up at 4:30 am after I fell asleep at 12:15... that is. 

She went to school at her amazing school and although she seemed apprehensive at first (2 week break) as soon as Izzy brought out the guitar and started singing one of her faves (Hit the road, Jack... and don't you come back NO MORE NO MORE NO MORE NO MORE!) she was smitten. I must say that the feeling of leaving her in the care of Susan and Isaiah where she's happy, loved, respected and challenged in an environment that supports who she is, is a completely different feeling than the classroom we visited yesterday. She was welcomed with love and compassion by her teachers and her classmates and I left her there with a buoyant heart. 

Much different than yesterday, no? 

After school we got burgers and did puzzles and then had friends over to swim and by the end of the day I felt like all was right with the world. Of course I did have a LONG conversation (almost 40 minutes and I did most of the talking) with the supervisor for the MESD preschool, and feel like not only will they follow up (and hopefully change) on my concerns about the teacher and classroom but we're checking out another classroom and it sounds like a much better fit. The supervisor spent most of our conversation in stunned silence, especially when I talked about how upset i was for these children without voices that were being unheard, unrespected, unloved. We shall see what the future brings, and you know even though my daughter will not be attending that class, I will be following up to make sure that those other kids get what they need. I may only be the mama to one Ruby, but I can be the mamabear to MANY children. 

And that's when I walked away...

Today was to be the first day of Ruby attending a public school. Because of her autism designation, she receives 'services' from the school district, one of which is free preschool. She could have attended last year, but I wasn't ready for her to be in such a 'school' type of environment, so we chose a private (and awesome) home-preschool and Ru received one on one with a specialist (MB). We decided (with ruby's private teachers and MB) to try the summer program at the public school before enrolling in the fall program. We met with and spent time in the classroom of the teacher (N) we thought would be there, and thought she was wonderful. She was kind, and compassionate, and seemed to really try and connect with each kid. One of the aides (S) was great, she really played at the kids level and clearly had connection with them, the other was, meh. We were excited, and hopeful that this program would offer Ruby something supportive and helpful as we prepared for kindy (or not). We had this grand vision that it would help supplement the awesome connection and growth she was achieving from MVCS by providing a different type of structure, and teaching all of us how to better support Ruby in a learning environment. 

And then I got a call that N would not be teaching this summer (and probably not next fall) because she was moving to a community support role like MB. Awesome for some kids, not so awesome for others. I spoke with the teacher that would be taking over the classroom (Mrs. B) and felt concerned from the short conversation that she would be a little too structured for a kid like mine. She mentioned that when a kid had a meltdown they had to sit in a chair, cause it wasn't safe to freak out and roll around on the floor.  Um yeah, freaking out in a chair is awesome. She said that when a kid had a meltdown, they would have to sit outside the circle, because what they all really wanted was to be IN the circle so they would straighten up really quick. Um really? most kids on the spectrum have to work harder to connect, so removing them from others is going to motivate them? I think not.  This is a classroom of typical children and special needs children, mind you. So, I'll admit I went in feeling less than hopeful. 

We arrived and Ruby made a bee-line for a shelf of toys and began happily exploring. Another child (also new to the classroom) joined her and I felt like maybe this would work out after all. Within a few minutes Mrs.B informed me that those toys were not to be played with, that they were reward toys for extended care (one on one time with the special needs kids), but that since Ruby didn't know she would enforce it on the next day. I replied "well maybe you shouldn't have them where the kids can reach them" to which she said "Oh, she'll learn".  Really, I thought? really? why not set these kids up to succeed rather than fail? Why not set the room up so that the things they can access are safe and available for play and learning?  So, when Ru finished playing, I put it away and when she reached for it again, I explained that she couldn't play with it till later. Mrs. B said "oh we'll enforce it next time" to which I replied, "no really, it's just better to set the boundary and direct her to something she can have." Duh. I'm not a special ed teacher, but I do know a few things about kids. 

At this point, Ruby got upset. Another child was having a terrific melt down, loud and sad. The noise clearly was aggravating a lot of kids and I think the energy just took Ru over the edge. She kept running from door to door saying "time to go home, time to go home! Shoes on, time to go home!" I tried over and over to soothe her, saying "let's just play a little while and then we'll go home" all the while, my heart telling me to "GET OUT", but I didn't want to make my decision based on 5 minutes and a meltdown. 

After one of the longest and saddest meltdowns I've seen my child have, complete with sweat from crying, she calmed down when the kids went to circle and started singing. Most times when you imagine a preschool doing circle time, you think of all the kids on the floor or on mats... nope, these kids were sitting in hard wooden chairs, even the one girl that was still melting down and bucking her body all over the place, while an aide tried to get her to sit in the chair, saying "you're going to hurt yourself if you don't calm down". yeah. that works. We moved closer to watch them singing, and ruby joined in a bit, but never left my lap and wouldn't let me join the circle. Fine with me, I believe that it's better to spend a week outside watching and jump in when you're ready than push her into something... call me crazy. The teacher kept interrupting to say "Come on ruby, don't you want to join us" and things like that, which infuriated me. Every time they tried to do that, she started crying again, for effs sake, let her warm up already. I'd never EVER seen her react this way to a setting and no way in hell was I going to push her. 

After circle time it was snack. The 4 special needs kids were all having meltdowns at this point yet they just seemed to be shuttled along to do what everyone was doing. Ruby sat happily and ate raisins and crackers doled out to her by the sweetest little boy with the bluest eyes I've ever seen. The teacher offered her a peanut butter cracker, and then asked if she had any food sensitivities. Um, peanuts kill lady, don't serve them at school. The kids were rushed to have snack and clean up and then finally we went outside to play. 

Here's where it gets bad. 

All the kids took a hold of a rope to walk out to the playground since it was up some stairs and down a hallway. Ruby and I took up the rear, as she was still not really ready to join the crowd. Just in front of us was a special needs kid with a helmet on and an aide. As we were walking down the stairs, he went into meltdown mode and became a noodle, flopping on the floor. There were 2 aides and a teacher with this group of 10 children, and the aide could have easily stopped, connected with this child and helped him make his way outside. What actually happened was something that I doubt I will easily forget. 

She yanked him up by the arm and hissed "we're walking here, not doing THAT". 

What really struck me was that this little guy didn't talk, he couldn't complain, he couldn't tell his mama and daddy that someone was so mean and disrespectful to him at school. I wanted to call this boy's mother just to let her know what was happening to him at school. The thought of my child having a meltdown and being treated this way should have been enough for me to walk out, but no, we stayed. 

After playground time Ruby desperately wanted to go home, but since my purse was inside, we went back to the classroom to stick it out and see how the morning would end. There was more singing/circle time, where they sang a song about two birds and each kid got two little birds on sticks to dance around with. At then end, they took turns putting their birds in the basket, but when ruby ran up to put hers in (not in order around the circle) she was chastised for not waiting her turn and the threw the birds on the floor. Hey, I'd do it too! She was just trying to fit in and do her part and was told she was wrong. Bleh! After the song the kids got some table time and Ru chose to do an alphabet puzzle. We sat together for 15 minutes doing the letters over and over as she correctly named most of them and the animals depicted on the pictures. She was clearly learning and enjoying herself.  

At this point all of the neurotypical kids left and it was just the 4 special needs kids left to have one on one time with the teachers and specialists. We were undecided if we'd stay, but since Ru was having fun I thought we'd try.  The one aide (S) that I thought was fantastic was working a puzzle with a sweet little guy when he decided to leave the table and wanted to run trucks down a ramp. Mrs. B said sternly "NO. put that away, one on one time happens at the table".  S sat down at the table with the now melting down kid and smiled a weak smile at me, mentioning that the first day can be a little overwhelming, to which I replied "yeah, it's a bit too rigid for me" and she said "yeah, me too". 

And that was it. I know that S was really doing the right work. When it's time to connect with a kid one on one, you don't force them to do what you want, you follow them to what interests them and you find a way to develop language, learning and social skills. This was the final nail in an already rotting coffin so I stood up, and told Ruby it was time to go home. She RAN for her shoes and jacket singing "time to goooooo home!" 

Mrs. B said "oh, you're leaving?" 

And I replied "Yeah. I've had enough."

My child is already in a school where both the teachers AND students work to connect with her and each other. She's loved, and respected and is learning new things every day. I spoke with her special ed coordinator (MB) and will speak to the supervisor tomorrow about what we experienced and witnessed at this classroom today. I know there are other special ed preschools, and hopefully we can check out another one, but there is no way in effing hell we'll ever set foot in that woman's classroom again. 

Slow down, please.

When did they become such KIDS? 

 

 

 Our kids? sitting quietly at a cafe having a snack? WHO'S KIDS ARE THESE? 

In truth, that lasted about 5 minutes, tops.. and Max was running from one end of the cafe to the other, trying to break into the bathroom or the kitchen alternately. 
 
 

what saved the day:

1. Salt water pool to make swimming kinder to your eyes and skin

2. Tankless hot water heater to add enough hot water to make it tepid on a 70* day

3. Stirfry and noodles for dinner, that was still good even when it was cold

4. Incredibly tired kid, and  an easy bedtime (although starting an hour later than usual) that will (with the grace of god) result in a slightly later than usual wake up... truthfully, anything past 6am rocks.