If you are going to make big sweeping changes to how something is done, you need to communicate early (and often!) to the people those changes will be affecting. This seems like a simple rule, but it’s not always put into practice.
Over the past few months our district has been talking about upcoming changes to the autism program. I have zero issues with the current program, it’s been fabulous for the boys, and they are thriving. We are very happy in Minneapolis Public Schools. At the Monthly SEAC meetings I’ve attended, any discussion about the changes have made sense to me, and I have been comfortable with what is being rolled out. There has been very little push-back to the changes at the meetings I’ve been to.
If the changes are implemented well, this could be a great way of getting kids back into their classrooms, back into their community schools (vs being segregated into cluster schools), and more aligned with the federal settings.
I am not so naive as to believe there will not be stumbling blocks, or that the changes will be right for every single child, but I think the reasons for the changes are sound, and I think the changes are overall good, and I think this could really work.
I seem to be very alone in my opinions, at least I haven’t found many other parents who agree (or are willing to speak up on the matter). I am starting to think this is because the vast majority of parents do not know about the changes yet, and those who do are being informed by a very vocal group of parents who are absolutely outraged (Call the media! This is Criminal! This is detrimental to our kids!) vs by the people who should be sharing the information: the people who came up with the plan- the Special Education department.
You can not imagine how much this has made me question my sanity or intelligence. How can I, an educated mother of two autistic sons entering 1st grade, be so daft as to think these changes are OK, when everyone else is screaming for every advocate in the sate to take up the cause of putting an end to these changes? I’ve asked nearly everyone I know who has seen and heard the same information if I am missing something, and I have been assured I am not.
Am I just more level-headed? Maybe I can see past the knee-jerk reaction to freak out whenever something will affect the boys, and give it a chance? Maybe I am more trusting in my boy’s abilities? Maybe I am too trusting of the boy’s educators to want the best for them? Maybe I can see the good the changes will bring? Maybe I am right and they are wrong? Maybe we are both right?
What I want to know is this- what would the motivation be for a district to set up kids for such failure? Because that is what these parents are saying these changes amount to- nothing but detrimental, criminal level failure of our children, who will be no doubt ostracized in the process, and left on their own to fumble through. Apparently in this world, IEPs don’t exist, and neither do federal settings.
So far all I’m hearing is the token “it’s all about the budget”, but I hate to break it to you, in a school district EVERYTHING is about the budget.
There has to be more. I don’t think the district would do something to cause this much blowback, if they didn’t think the changes were good, and important, and that kids would be supported.
At this point I want to completely remove myself from the conversation. Those who are talking the loudest do not want to hear dissent. They are only interested in finding people who agree, or those who haven’t heard any information yet, because they can be easily swayed. And really, what could I possibly say? I have nothing to back myself up- there is nowhere to direct people to get information at this point.
Do you see what I mean about communicating early and often? The district has already lost on this, because they are letting a group of unhappy parents write the script. As we go into the last week of the school year, with the last SEAC meeting this Thursday, I just want to skip ahead to August, and have the changes in place.
Let’s get some information out there MPS. Stop letting this conversation be based on fear and negative propaganda.
It’s been just over 4 years since the word “autism” was brought into our life.
The boys have had many (MANY!) evaluations. They have logged countless hours of speech, and OT. They have graduated from an autism day treatment program, and they stand before me looking far different than they did on that December day, when Early Intervention came for a speech evaluation.
Today, after 3.5 years of speech and OT, the boys have “graduated” from Fraser.
This is most likely just a break from speech and OT, and a much needed one. We are now mentally in a place where this seems like the right thing, the best thing, and we are not afraid of scaling back to “just” school, and the services they get there. I couldn’t say that two years ago. Who am I kidding? I couldn’t say that a year ago!
The absolute hardest thing for me, is leaving Lincoln’s amazing speech therapist. All of our therapists have been great, but Maureen has been with Lincoln since day 1. From early on, she was his “person”. It certainly wasn’t me or John. It was sometimes Grandma, but mostly Maureen. It took much longer for Lincoln to find his words, we were preparing ourselves for him to never talk. And it was really hard to imagine, considering Wyatt had started picking up sounds and words just a few months after starting ECSE.
But then, he started naming letters. And making more sounds. And then words. And then came the reading. Oh the READING! And now, we have a 6 year old who is constantly narrating life, navigating all of our adventures, and telling some very tall tales.
Today, as we walked from our car to the front door of Fraser, I remembered those first months, when they were not quite 3. The boys had to wear their backpack leashes just to get through the parking lot safely. I was an emotional mess at every session. Everything was overwhelming. Autism was scary.
I recognize that although they still have some issues in waiting rooms (Wyatt can’t walk by a reception desk without checking on the state of the computers), it’s really hard to leave the building without making a dash for the “big gym”, and they still have countless hurdles ahead of them…they have come a really long way. I have come a long way. Autism isn’t nearly as scary as it seemed in 2011.
These are the numbers that have swirled around the Autism community for the past year or so. That 1 in 54 is important to me because it most closely represents us- 1 in 54 boys will be diagnosed with Autism. At least that is the finding from a study of 8-year-olds in 2008.
That 1 in 50? That is from the most recent study.
1 in 50 kids has autism, according to a 2012 study. Of course, this study, along with all of the other studies, has it’s detractors. But really, 1 in 50 doesn’t seem too out of the ballpark to me.
So, what can you do?
Well, for one, if you have an infant or a toddler, and you have a nagging feeling that something is up- even if it’s “just” a speech delay…do me a favor and call Early Intervention.
If you have a friend who is worried about their child- let’s say he isn’t acquiring language at the same rate of his peers. (I’m using language because it’s usually the thing that triggers and evaluation, yet most people blow it off.)
Please, do NOT say any of these things:
– Boys talk later than girls
– He has an older sibling/ twin who communicates for him, it’s OK
– You always meet his needs for him, he doesn’t *need* to talk
– He was premature, he will talk later
– My cousin’s uncle didn’t talk until he was 4 and now he’s a lawyer…
Instead, LISTEN. I have a son who was a late talker and I have twins who lost language and became non-verbal. The gut feeling was completely different. The fear and worry was different. I knew pretty quickly that something was not right with the twins, and I didn’t worry at all with my youngest. It’s different.
If you have been in this place of worry, if you have ever called Early Intervention, if you have ever had a child diagnosed with Autism or another special need- please, SHARE your resources. Support a mom or dad when they have worries, do not blow them off. You should be their first shoulder to lean on, you have been in their shoes!
It is a really isolating place to be when the mothers around you abandon you in your greatest time of need. Telling someone not to worry is the equivalent of telling a mom to sit down and shut up. Sometimes things are not OK. Sometimes things warrant a professional opinion.
Why are we so quick to tell moms that everything is fine? Is it because we are afraid we are missing something with our own kids? Is it because their fear is also our fear and we desperately don’t want to peek behind the curtain and deal with what might be waiting for us?
Don’t wait. Don’t tell others to wait. Resources are available and completely irreplaceable. You do not want to “wait it out”- waiting is just wasting time. The only thing we have in this fight is early intervention, the key word being EARLY.
And one more thing- if there is a mom you know who is taking steps to figure out what is going on with her child, don’t tell her that she should stop looking. Don’t tell her that she can instead fix her child with oils (or herbs, diet, a warm bath before bedtime and spinning around 6 times upon waking up in the morning)- it only serves to prolong the inevitable, which in some cases takes away free and affordable supports.
I have been dragging my feet on making dietary changes for the boys since we first got our autism diagnosis just over 2 years ago. (Sidebar: has it only been 2 years? It feels like it’s been forever!) For every study or anecdote that says a gluten-free casein-free diet makes a difference, there is an equally compelling study or anecdote that says it makes no difference at all. This is pretty much how it goes with anything regarding autism treatment.
So, considering the boys are frustratingly picky eaters (at least at home) and probably 75% of what they will eat is dairy- mostly milk- I really hoped no one would ever suggest we try one of these diets. Because they know as well as I do that it might not, and probably won’t, make any difference. At least not the kind of meaningful difference that they are looking for: a calm body that leads to sitting and attending.
But, it happened. Lincoln’s OT suggested we look into it, so here we are. Gluten-free.
Well, we are in the process of getting there. Monday is the last day they will have school lunch, so starting Tuesday they will be 100% gluten-free and anything we eat as a family will be gluten-free.
Over the past week- they have refused to eat every dinner I prepared (Fresh20 Gluten-Free menu, you are not kid friendly). Which really isn’t unusual, it was just different in the fact that we didn’t have a peanut butter sandwich to fall back on. Peanut butter and apples or bananas is getting a lot of play in the snack and breakfast department, so, milk it is! It’s like have 35 pound infants over here with the amount of milk they drink.
Our old breakfasts were Corn Chex, Rice Krispies, or Life cereal with fruit, and sometimes waffles or oatmeal. They are suddenly not fans of cereal, so bananas and milk have been the go-to breakfasts the past few days.
Snacks used to be granola bars, fruit leathers, string cheese, fruit, or goldfish crackers. They aren’t fans of my gluten-free granola/ breakfast bars and all of a sudden are not fans of cheese, so I purchased any snack I could find with “Gluten-Free” stamped on it. They are now huge fans of Pop Chips.
Tell me again how eating this crap is better?
I haven’t tackled lunches yet.
If it were just me and Yogi Dad, going gluten-free would be easier- we enjoy food, and the fact that fresh veggies, fruits and meats are all part of the diet makes it a little easier. Rice, rice noodles- I can hang with that*.
But, when your kids already don’t eat, it seems like you are just setting them up for a drastic weight loss- you cannot survive on milk and a multi-vitamin.
Which brings me to my next point:
This is all probably in vain considering we haven’t taken away dairy and we don’t plan to in the near future. I have a hard time substituting milk with sweetened milk substitutes. And yes, I am aware they come unsweetened- my kids would be on a food strike if I tried to replace their milk with unsweetened almond milk. We have tried. Hemp milk, goats milk- we go through a gallon+ a day. Unless you can show me goats milk that costs less than $3 a gallon, it ain’t happening.
So, here we sit. Doing this for some unidentified amount of time- 3 months? 6 months? Considering there has not been identified gluten allergy or intolerance, it kind of feels like a waste of time and energy. Right now it’s just a total crap shoot. These are the hoops you jump through when there are no answers, when there is no cure, no identified reason for a disability. You just go from therapy to therapy, latching on to ideas. God help me if I ever get to the point where subjecting my kids to a bleach enema sounds like a good idea!
To be honest, I don’t in any way think this is going to make a difference in their behaviors. But, we have to make an effort, so I will be putting in the effort.
Did I mention Yogi Dad went vegan for lent? Seriously. I need a personal chef right about now.
I will try to keep updated here or over at www.MinnesotaMom.com as to our progress.
*We are not forcing ourselves to go gluten-free- there is no way in hell I could give up a good beer and cake. Anything eaten away from the boys- after bedtime, meals out etc. is fair game for whatever kind of flour-fest we can muster.
All week I’ve been feeling sad about the impending first day of school and how it’s so much more than preschool but not quite kindergarten and will I feel jaded and left out when kindergarten finally gets here since we’ll be old hats at the bus and the teachers and separate classrooms and all that jazz.
But as I sit here on the night before your first day of school, I want to remember where we are today, so I can see how far we have come.
Last year at this time, you were not saying a word. That would come right before Christmas break and then explode in the following months. Now, you practically carry on full conversations and as we all know, you can read.
A favorite Lincolnism of mine is how you label everything as a store, park, restaurant etc.
Minneapolis Children’s Hospital Restaurant Store
State Fair Restaurant Park
Fraser Child and Family Center School
Everything gets a label, I guess that is how you keep things filed away in that brain of yours. This is where we play. This is where we learn. This is where we eat. This is where we buy things. Smart kid.
You have so many wiggles and not enough ways to get them out. Your hand (or chew) goes to your mouth about 900 times a day as you bite down and erupt into a giggle. Your giggles are contagious. You laugh and I can’t help but smile. Your teachers have always said you are nothing but joyful.
I am so thankful for this gift!
You gravitate towards adults and given a wide open space you will gallop around like a wild pony. I hope you find some kids in class to gallop with you! So many new friends to meet: teachers, therapists and classmates alike.
You will be in two different schools and will be separated from your brother for both. I don’t have many worries about this (other than how I will keep track of what team belongs with what brother) and I am sure your teachers will keep us in the loop on any apprehensions they detect, but I expect you will be just fine.
I will miss you and look forward to your floppy haired head bobbing down the aisle of the bus tomorrow afternoon!
You are my sensitive kid. In every possible way.
Right now you are starting to stand your ground verbally, and I love it. You tell me what you want. You tell me what you don’t want. You tell me when Judah or Lincoln are getting on your nerves. It’s great to see you standing up for yourself and finding your voice when just months ago you would have dissolved into tears or a tantrum. Of course that happens sometimes too, but not nearly as frequently.
You are currently testing some boundaries, no doubt brought on by some of your brothers less likable behaviors. Pretending to pull hair. Pretending to bite. Pushing, but only halfheartedly and always with an eye out for me to see if I’m watching you do it.
Of course if you do catch my eye you stop immediately and smile.
I’ve got your number kid- you don’t have a mean bone in your body! I hope this phase is short lived and you move on to something new.
You are all skinny legs and knobby knees. You barely eat but can drink your weight in milk on a daily basis.
Super Why is still your first love, although I have an feeling I am somewhere in second place (close or distant is yet to be determined). You have a way of pulling a line from an episode and inserting it as your answer to a request or a question and the person you are talking to usually has no idea you are scripting. You are like a scripting ninja. I love to catch you in the act with someone who has no idea you are doing it.
The way to draw out your vowels makes me smile and I kind of hope you keep your unique inflection. You are like a Minnesotan crossed with a New Yorker, who knows where it comes from but it suits you.
As with Lincoln, I hope you start noticing the kids in your classrooms and find someone who loves to play “chase” as much as you do. Of course no one will ever turn away your friendly smile, shiny eyes and contagious laugh. Everyone who meets you thinks you are a pretty great kid. Maybe aim for some friends more your size though!?
I want you to be brave and remember that Lincoln will be there on your bus rides and you can always ask your teacher to see him. He will always be near and he will always be home with you at the end of the day. I know you miss your brother when he is not there and I know you notice his absence more than he seems to notice yours and I kind of love that about you.
I will see you tomorrow on the bus! Judah and I will be waiting patiently on the porch and I know he will be as excited as me to see you come down the steps!
Over the next 2 weeks we will try and keep things flowing as smoothly as possible as we transition to a full day of school and therapy punctuated with 3 different bus rides. I think you will handle it well and I hope to God I notice right away of you are struggling. (It’s never as obvious as you think it will be.)
Tomorrow will be a busy day. I hope you aren’t nervous. I hope you don’t struggle to keep up. I hope it’s the beginning of great things and a great new year!
Well, I still have a week or so, but yeah. Autism Awareness month flew by.
Last April I tried to write a post every day and although I didn’t make that goal, I had quite a few posts. This year I feel like I am dropping the ball right and left.
I did have an article published in the newest edition of Multiplicity Magazine (I start on page 70) about the importance of Early Intervention and that was pretty exciting.
But I think this year, Autism is just so much part of our routine, I kind of tend to forget about it unless we have plans to go out beyond our front door. Because that is when I start to break a sweat and become hyper aware of everything around me and how my kids are acting. I’m not to the point where I don’t care what people think.
But, that is not what I was planning on talking about!
I was going to talk about how far the boys have come in the past year. (Among other things.)
So, for starters. Lincoln. He didn’t talk until December. And now…well let’s just say the only time he is NOT talking is when he is asleep. I love it. He wants your attention all the time. He will come right up to you and grab your hand and force you to engage him, saying over and over what he wants until you acknowledge him and what he is saying (it’s just so damn typical!). It is just so amazing I don’t think you can fully wrap your head around it unless you have had a non-verbal kid who does not engage.
Last July I wrote this post and at the time we really thought there might be a chance he would never speak. Actually, we thought that all the way up until the moment that he did. And then I thank God that I did not listen to anyone who told me I jut needed to wait it out because holy shit, what has happened in the last year has been amazing and it wasn’t going to happen on it’s own while we sat around and waited.
And then we have Wyatt. Wyatt is a different animal than Lincoln. Wyatt has his speech down and he does engage but he has a pretty typical trait of autism that Lincoln does not: he likes to script. Wyatt will recite episodes of Super Why from beginning to end even though he has not watched TV on a regular basis since our TV was retired to the recycle bin in January. After the boys teamed up to push it onto the floor. That was a big crash.
The end of TV in the living room was the best thing we ever could have done. The engagement of both boys has grown by leaps and bounds. The other thing that has helped is finally getting our playroom back in order. Last spring and summer we dealt with a flooded basement every time it rained until new gutters were installed. It took us almost a year to actually trust that we wouldn’t be pulling back carpet and sucking up water with our carpet cleaner after every downpour to try and make it a usable space again. But we did it and it’s got a few finishing touches left but I am hoping to have my reveal up next week! Now that they have a designated place to go, we are there all the time. Our house is less chaotic and everyone seems a little happier. I am loving it!
I’m back into brain dump territory here so I am just going to cut myself off!
This was the first “event” that we’ve participated in since the boys diagnosis in December 2010. Everything else was a bit too soon but this year, we were ready!
I’ve never been a fundraiser and I was a little be apprehensive about setting a goal at double the suggested minimum team donation, but I figured we could scrape together $300. I chose $300 because the cost of an initial evaluation at Fraser (not the medical eval, the get you in the door and explore eval) is $150 and since we’ve got two guys there it only makes sense to raise enough to cover two evaluations.
Well, we covered five and some change! Up until last week I was one of the top fundraisers, not something I expected at all. In total they raised over $75,000. So that was pretty awesome.
Thank you to everyone who donated on behalf of Team Clotfelter. Family, friends, people I have never met in my life. I am so grateful we were able to give that back.
So, the walk.
It was good. We got there and the first thing I thought was “which kids have ASD?” It was different to be around so many families just like ours where our kids and their quirks don’t stand out quite so much. It was a good feeling.
I had one little break down. Well, *almost*.
Before the walk they had some dancers from a local dance school preform. It was great, Lincoln was laughing and clapping through each dance. Out of the corner of my eye I saw one dance getting ready, she had Downs. I thought that was pretty cool. When her group was called up the announcer talked about how this group of dancers was made up of 20+ special needs girls (Downs, ASD, CP etc.), some who had been dancing together for 12 years and their partners- other girls their age.
Turn on the water works.
It was just so awesome to see pre-teen and teenage girls spending their free time to help these girls enjoy something like dance. I have to say I don’t think 14 year old me would have done that given the opportunity. Of course we were in the very front so I was begging Yogi Dad to tell me something funny so I could pull it together.
I have a feeling there will be moments like this at all the events we attend over the years.
The walk itself was fun- it wasn’t a 5K or anything. It was just walking around the 1st floor of the Mall of America and they had booths set up along the way. The boys got to hold a bunny from a therapy animals group on their lap. Lincoln looked at the handler and said “Does this bunny have eggs?” (I think the Easter Bunny book has really left an impression!). Then we met a Peep from the Peeps store (another big hit with Lincoln). And then we ended at the sensory booth put on by their therapists at Fraser.
That was probably the most fun of all- music, ball pit, art projects, bubbles. And of course seeing their therapists outside of Fraser! (Sorry for the blurry pic- Wyatt was a squirmy worm!)
Judah had fun too:
It was a good way to spend a morning. I’m sure we will be back next year.
I feel like all I’ve done this month is talk about diapers (and mostly I have!) I love them, but I am happy for a little break. Last month both flew by and crawled at a snails pace. It’s been chaotic and stressful and also full of some great moments (like when Lincoln pointed at a picture of fat Elvis and said “Daddy!”- I can’t make this up).
On the home front we’ve had a lot of autism issues to deal with. Just when you think you have a handle on everything you get thrown a curve ball. When the curve ball comes from family it hits particularly hard. We like to think everyone is on the same page, that we are lucky, that we aren’t one of the families who on top of the awesomeness (heh) of autism, has to also deal with the super critical eye of family. But we were kidding ourselves. Or maybe we just wanted to believe everyone got it and was on board. We’re now to the point of being self-conscious of our kids and bowing out of family functions. I never wanted to be here, but here we are.
Anyways, we are happy to have a super supportive team of teachers and therapists behind us to reinforce that we are doing exactly what we should be doing (and also remind us that they are only 3). We need to hear that. We need to hear that often. This is autism, autism is hard and weird and sometimes destructive and sometimes you just have to roll with it. There are no easy answers, this isn’t going away- you just deal with it and find the things that lessen the tantrums and bring around the eye contact and the engagement. In the case of our sensory seeking boys- jumping and knocking shit over.
I think it’s hard for people to remember that this wasn’t exactly what we imagined when we decided to become parents and we are doing everything we can for our kids. It’s like a punch in the gut when we get criticized and emotionally it sets us back to square one, wanting to hole up with our kids and avoid everyone and everything. Not where I expected to be after a year, especially since the boys have made some amazing strides.
In the past 2 weeks we added in a new therapy that we had been waiting to get through the holidays to add because it is so intensive- the Wilbarger Protocol (brushing and compressions). Lincoln has been doing this on a weekly basis for a few months now but it’s new for Wyatt and doing it every few hours all day every day is new for them both. The eventual intent is for them to be able to regulate and engage better between sessions and we can definitely see glimpses of that.
On the other hand, we have also seen some setbacks in other areas (which is to be expected)- more biting/ hand chewing, more tantrums, more destructiveness. Maybe we’re just more quick to jump after our vacation but it’s wearing on all of us at this point. I am in a constant state of high alert and my nerves are completely shot. It’s pretty much endless whining and screaming from Wyatt (on top of him taking his pants off every chance he gets) so needless to say, our days can be pretty stressful.
Did I mention they all work together (sort of) to open doors and knock down baby gates?
I’m crossing my fingers that February is an excellent month and we can all relax a bit. Yogi Dad took an impromptu day off tomorrow so I could get out of the house and away from the boys.
When we arrived here a week and a half ago, my In-law’s house was sparkling clean and beautifully decorated. (Not overly so as my MIL had read that too many decorations might easily overwhelm their senses.) There were toys collected for the boys to enjoy while they were visiting. A bedroom made up with Thomas the Train bedding.
Everything was perfectly festive and inviting.
Until the boys actually stepped foot into each room.
Within days of our arrival:
The couch was pulled away from the wall so they wouldn’t climb through the cut-outs in the wall and escape into the rest of the house.
A glass topped coffee table was removed to the garage. A fancy sitting chair that proved to be quite bouncy soon followed. Then a torch style lamp that they thought was the perfect thing to knock over (after being carefully glued back together) was moved outside. (Along with anything else that was easily destroyed.)
A cabinet with glass doors was turned to face the wall.
The doors on the entertainment center were tied shut.
Things started to migrate north.
A small trunk with a lid that made a most satisfying crash was tied shut and pushed to stratigically cover a floor vent that Judah found and started pulling out.
I am kicking myself for not bringing the trampoline.
Baby gates were borrowed from neighbors and each day we get a *little* closer to having a room that is completely free of things the boys can break or ruin in their quest to satisfy their sensory needs: jumping and crashing.
There is a reason our living room at home consists of a couch, a chair, a TV on a low table and a trampoline.
Thank you Grandma and Grandpa C for rolling with the punches (and the crashes and jumping and screaming and whining…)! I hope the smiles and giggles and calls for “Super Delicious Chocolate Milk” are the things that stick in your memory the most from our visit.
Last night after we tucked the Three Amigos into bed I sat down to check Twitter before starting the dishes. The first thing I noticed was a super long hashtag: #YouMightBeAnAutismParentIf. I love me some hashtags but I don’t usually jump onto something that might be trending unless I’m at a Twitter party or something. This one though, this one I couldn’t pass up!
I clicked to see what other parents were saying and I was hooked!
These were my people. Telling it like it is. The good. The bad. The weird. The embarrassing.
I talk to autism parents all the time on Twitter, it’s one of the things that makes me feel sane. But last night? It was like an event! It had me alternately laughing out loud and in tears with each new tweet.
I followed that hashtag for 4 hours before I finally went to bed, leaving my dishes to sit in the sink until today. Where they are being further neglected as I write this post.
We are almost to the 1 year mark for the boys diagnosis. If you would have told me a year ago that I would be able to laugh and cry at what autism brings in the the span of 2 minutes, I never would have believed you.
First I wrote about living in Northeast with my husband, at Stanley in the City. Then I wrote about my first pregnancy (Surprise, it's twins! Surprise, being pregnant sucks!), at Player to be Named Later. After our third son was born I migrated everything over here, to The Slacker Mom. Two cross city moves, and one more son later, and here we are.