No Sugar Coating-Our Autism

Most people understand autism as extraordinary behaviors but really the behaviors are the RESULTS of barriers and overstimulation for a billion different reasons that are specific to each individual. Today I am sharing something very personal because autism has become debatable, cliche and sometimes even cool, some people even choosing to “identify “as being autistic like it’s a choice. So to all those people I’m here to tell you, this is not a game, this is some serious shit right here. To the lady who uncomfortably stared at my son at a community event yesterday , sucked her teeth , rolled her eyes and shot me a disapproving look for daring to bring my son out JUST to apparently make her life miserable. All you had to do is stand there !! Noah wanted be there, he fought to be there, he spun,stimmed and banged , he was determined to stay !! I’m so proud of him because he did it !! It’s 24 hours later and he is still feeling the repercussions from all the stimulation, my son is a warrior! Autism is not a choice, it is a battle…. it is painful. The video you about to see is not my little guy having fun , this is what he looks like when he is trying to process a bunch of new , confusing or stressful information . This is painful for him, not only because of the way he feels but because of the way the world responds to him. He is curious and intelligent so he will bravely continue to seek new experiences even though he understands the pain they cause him and I will always support him in that . So let’s stop with the debates and step up beside him and others in their journey and just be human.

 

House Keeping With Your Special Needs Child ! Theres No Maid HERE !!

So I’m cruising on Facebook and see this post on one of my Autism mommy groups written by a mother of 6 and how she is able to keep her home clean and organized. The comments under the post were mostly by furious exhausted autism mommys as they did not feel the post was even relevant to them and guess what, they are probably right ! House keeping and having a child and some more than one child with special needs brings house keeping to a whole different level. When my adult children were small(there were 6 of them)my house was a hot mess ALL the time ! Now I just have my 6 year old with autism and I have to tell you he can make 3 times the mess of all my children in half the time BUT my house is NOT a mess, not anymore anyway. I finally have this figured out after 35 years of raising kids. For me the question is not “how to clean a house with a VERY active 6 year old on the spectrum” its more “how not to get stuck cleaning your life away ! I have better things to do with my life than clean, so take it from an old pro, this IS how you can STOP cleaning SO much. Though my focus is mostly for families with kiddos with special needs this would also work for any family with small children.

TAKE OWNERSHIP OF THE TOYS ! :

Face it we love our kiddos and we want to get them their hearts desire but I’m going to be honest with you if you have a kiddo with autism and special interest they are probably only playing with a few of those toys, the other toys are more than likely just contributing to the billion things in this world that are over stimulating to them and triggering behaviors. Keep the few toys they are actually playing with and put the rest away. When I say put them away I mean, make them inaccessible even if you have to lock them up. I watch my lil mr and when he starts getting bored with those toys, I will go to the BIG toy box and exchange the toys in his little toy box. My guys has been playing with the same 4 super heros for the last week without complaint and seems waaay more content in not having to spred ALL the toys he owns out in front of him. The bonus is when he does exchange his toys its like Christmas everytime.

SPECIAL BOXES:

Make some of your childs toys work for you:

I have 2 boxes I keep up out of reach, one with games, one with art supplies, playdough and playdough toys. These are “special boxes. They only come out when I can sit and play with him and he earns them with accomplishing expectations(like cleaning up after himself). I really make these times special and give him my undivided attention when playing with these “special boxes BUT when we are done he helps me clean them up and they get put away.

ALWAYS, ALWAYS HAVE A MOTIVATOR:

We always have to clean up what we are doing before we can do something else, its just the way it is. With a kid with special needs if you want him to clean up ALL his toys you have to make that something he manage and be successful at and you always have to have a prize at the end. Some kiddos just need a kiss others need a prize box, the best thing you can do to get your kiddo more independent is to find out what motivates him and set him up to succeed. If that means you have to pick up 2 toys with him hand over hand and the reward is a M&M then do it.

KEEP A SCHEDUAL:

As we all know our kiddos work the best when they able to predict what is going to happen next. With my guy he plays with toys for 20 minutes in the morning, I set a timer,the timer goes off, he picks them up (his 4 super heros) and is motivated to do so by the next step on his schedule which is eating breakfast and watching one of his favorite shows, other wise we would get stuck on picking up the toys for the majority of the morning. I try to keep that carrot dangling in front of him all day, he does something hard and gains something good. Build in things that motivate him on the other side of things that are difficult for him and put it on the schedule until it becomes a habit. When he just does it automatically then build in something else.

The bottom line to not having a messy house is to not have the stuff readily available to mess it up with. Do nothing for your kiddo that he can do himself, don’t take that from him even if that means doing it with him hand over hand in the beginning…in the end he will be more confident and you will both have less chaos if you both know and follow through on the expectations. Always do things in the same order ” first get dressed, then put clothes in the dirty laundry” ect. this will help him become more independent and establish a habit.

Find out what your kiddo CAN do, what YOU can do to help him achieve those things and resolve that it WILL happen, if it takes a week or a year, fight for his independence and yours. Build in motivators in the areas you see him struggling.

For me when I decided we were moving into our tiny house I also had to take a long hard look at what we REALLY needed, it was tough but in the end it was a huge weight off my shoulders to have less stuff to be responsible for. Face it we parents of kiddos with special needs have a lot on our plates…it does become easier if we have fewer plates to clean. Less stuff and working hard at establishing good habits has been key for us and though we aren’t always successful we are a long way from where we were !

I hope these few tips have helped, I have many more where those came from so feel free to ask and to comment on things that have worked for your family. We all need to support each other because the job we have can be hard. I look forward to hearing from you all !!

Tiny House- Big Life !

Sitting here snug in this tiny house in Maine, the temperature outside is -1 degree, inside an easy 70. This place super easy to heat and right now I am feeling very thankful for that. Everything is not ideal but really is it ever for anyone? The forecast for this weekend predicts a whopper of a storm with a possibility of 20 or more inches of snow ! This will be the big test for this tiny house and for our endurance here. I heat with a electric fire place and I’m really thinking we might be in trouble if the power goes out. I think that might be the case for a lot of people not just us. With this in mind I’ve been thinking of alternative heat sources. I’m not really crazy about heating with gas in such a small space, wood isn’t a good option either as Noah has asthma. A heat pump or pellet stove would still leave us without heat if there was a power outage. At minimum I do see a generator in our future. Watching the monster storm on the horizon knowing that my little mr is completely depending on me to keep him safe and warm is a little unnerving. The last several weeks have me a little unnerved, being out of work with this shoulder injury has taken a toll on my finances and my personal endurance, the lack of sleep, the pain is wearing on me. I just keep taking one step at a time and thinking of the blessing in the here and now, so far its is working. God has a way of putting just the right people in my life at just the right time, this time is no different. Though we have and will continue to face challenges we have also been gifted so much joy, adventures and beauty in the last few weeks. If I were to just sit here and keep my eyes, my heart looking up I would be so much more confident in HIS ability to provide for us, he always does. If I could just keep looking up I could let go of this fear because I know he has never let us down. I find proof in what I see… let me share with you my hope.

Beautiful Frozen waterfalls
Noah found Bigfoot Foot Prints !
Tiny ice shelves
Mr Moody Blue !!
That smile !! That joy !!

This is what keeps things in perspective, these moments in time that we would just miss if we spend our time not believing in miracles. These are the miracles, this is what I am working for, these very moments. They are here inspite of hardship, the lesson is to see them, stay in them, not to miss them worrying.

The Witness

Woke up this morning to lil mister tapping on my cheek at 4:30a. I didn’t want to get out of bed, I didn’t want to do this day, I tried to make a deal, to bribe, even blackmail mister to sleep just a bit longer. He was excited because his worker was coming to take him out for breakfast, but Noah doesn’t tell time yet so breakfast is when he wakes up. Ive been sleeping on the pullout couch because my shoulder injury makes it difficult for me to get in and out of the loft, so I rolled out of bed and walked the three steps to make coffee only to find out the coffee can was empty. I knew this yesterday but even though I have been to Walmart two times since I still have not remembered to buy coffee, as a matter of fact, I still have NO COFFEE ! As a I said yesterday, the pastor of my church passed away on Friday of this week, today would be our first Sunday without him. Really, I just did not want to do this. If I just stayed in bed I could just pretend everything was fine and I was just playing hooky from church. I’m still in shock. Our church is small with the core people numbering around 50. I knew I needed to be there with my church family but I just hadn’t had time to process the reality of this, I still haven’t in its entirety. Noahs worker came and I did manage to build up some emotional fortitude, get my big girl pants on, got myself out of my pjs, put on my face and started the 20 minute drive to church. The reason I’m telling you all this is because this little church out in the middle of nowhere Maine is the absolute best when it comes to messy, after I tell you what happened today you will see why. I pulled in the parking lot and saw all the same familiar cars I see every Sunday, all but Pastors. I noticed that right off, it was getting a bit real, I panicked for a minute but I pushed through. I stared at the front door with a lump in my throat but forced my self out of the car. As I reached the front door it opened and standing there to meet me was one of the men of our church, he greeted me with a hug and talked with me for a few minutes about Pastor. The sanctuary was full of the same people I have grown to love over the last 10 years. Tears running down their faces. I forced myself into my seat. Over the next hour and a half I watched in awe as this little church did the most beautiful thing with their pain and tears, they didn’t fall apart like we all feel like we might do when tragedy strikes, they pulled together. The ladies sang with tears running down their faces, the men came in between each song and gave testimony about our pastor and they fought tears too. Love filled the church and in our mess no one was left alone. As a matter of fact they turned their tragedy into strength , honor and love. The men in our church stood up and lead in compassion and humbleness with a drop of a hat. It was the most powerful witness I have ever seen. It was a testimony to our Savior and to the Shepard who led us for 14 years. I could tell stories about pastor all night and all the selfless work he did in the shelter ministry and our congregation but my real point in sharing this is mess done right breeds love.

Go Ahead !! Do It ! Whats Your Mess Today ??

The last month here at the tiny house has been happening at warp speed, there doesn’t seem to be any rhyme or reason to it. I was sitting here tonight watching Noah spinning around in circles, a Marvel character in each hand, scripting lines from the movie “Spider man” and teared up because that’s what happens to us autism parents sometimes, we just tear up because there is this wall between us and our kiddos that sometimes just seems impossible to hurdle. Really I just wanted to snuggle him and he just wanted to spin in circles and script, he didn’t want to be touched. Scripting is a big part of our lives, he hears or see something that impacts him and he mirrors it back, sometimes it’s entire movies,even in other languages other times its a phrase that shocked him, lately its been “shut the fuck up”, a phrase that he heard from another kid at school that has infiltrated his until now innocent scripts. Do you know what I want to hear ? I want to hear how my son feels about something, anything and know that it was his thought or idea I want to know what he thinks Warp speed I say !! The good bad and ugly. I’m writing this from so many lenses right now. I am a professional that hasn’t been able to work due to a shoulder injury. I am the sole supporter that doesn’t know where the next paycheck is coming from. I’m a church member who just found out her pastor has died. I’m a tiny house owner who has stepped outside of the normal to attain the dream of the stability of home ownership. I am a Christian who flails around in her walk. A mom that works hard to do her best for her children and often fails miserable more than succeeds. I’m a single woman who hasn’t given up on love but is terrified all at the same time. I’m a blogger who writes all this personal stuff about our lives for everyone to see simply in hopes that being a mess, being human will some how be the excepted norm so we no longer have to hide our messes, so maybe we will start to feel more alike than different and do our messes together. No one should have to bear the weight of the world on their shoulder out of fear of rejection or shame. I saw a post on Facebook yesterday that really ticked me off. The lady who wrote it was shaming mothers with ASD children for “complaining” about their children. It made me furious !! When a mother who is probably isolated due to the behavioral barriers of her child reaches out on social media to either find support of find a place to vent I applaud her because I know she hasn’t given up the fight, she’s looking for what she needs to do this another day. This lady would nail me to the cross !! As Ive said before, lets do this mess together ! As for me and my blog, if you want to jump on here and post what your struggling with today, you just go ahead and go for it, type away. You are welcome here with your messy self ! 🙂

The Secret Part 2

Its been a few days since I posted. Partly because I’ve been really struggling with mouse shoulder and partly because I’ve been feeling a bit blah. I know imagine feeling blah this time the year ? Its a weird blah that comes with getting up and going to work in the dark, working in an office all day and then coming home in the dark. DARK, DARK, DARK !!! BLAH !! But then I see the Christmas lights and feel the blah lifting a bit. Noah and I take different way home from day care every night just so we can see all the lights , I love to hear him squeal in the back seat “MOM ! MOTHER, MOTHER, LOOK AT THAT ONE !!!” I could just drive around with him all night. Then we get home and that’s when I realize my porch light is blown again. I’ve realized this every night for almost two weeks but still have not remembered to buy a new light. WE get out of the warm car and I fumble around on the freezing cold porch trying to find my key, Noah swinging from my coat ,Josiah on the other side of the door “MEEEEEEEOOOOOW” and there’s that blah again.  Finally in Noah races for the remote and I race to the fridge to find the easiest thing I can find to make for supper. Corn dogs was the cuisine of the night tonight. So much for my dedication to one ingredient foods, organic, white free…. my solemn vow to eat healthier just went right out the window with a little bit of blah . What is that you say ? Secret ? Oh my YES ! The SECRET ! Get ready for this !! Last Saturday I went on the very first date I have been on in 3 years !!! How did it go ? Well it was wonderful !! We had Thai food, went for a walk and found some beauty in the out doors, the sun on our faces, full bellies and great conversation. Super nice guy ! AND he even called me back ! I’m telling you folks I told him the whole truth !! And he still called me back, I even told him there were possibilities of meltdowns and biting, I didn’t even specify if it would be Noah or I delivering and he has talked to me every day since the date. I think I might be on to something here. Even if nothing comes of it, I am sure he will continue to be my friend. Us renewable energy, cool idea, tiny house loving people have a tendency to stick together. You know I think there was one thing about the date that I didn’t like, after being alone for so long at night when the house is quiet I am now keenly aware of that aloneness. So what is a girl to do ? BLah ? I could just not date and sink back into my hermit hole or I could get my big girls pants on be okay with a bit of this kind of humaning messy feelngs stuff. Well enough of that for now . Speaking of tiny house people, Jay is almost done with the next tiny house !! I am hoping to have pictures for you all soon see !

Have a great in blah evening folks !!!

Humaning The Tiny House Way !

I wrote about humaning a few blogs ago but its been on my mind a lot. How to human is something we try to avoid especially when it gets messy, looks different or is a type of humaning we just don’t know how to do. In a tiny house we are forced to face those things head on often times because there is no place else to go. I’m not saying that like its a bad thing and if it were a bad thing its good because it is the perfect opportunity to resolve it, really we just simple have to. That goes for everything from meltdowns to the potty and feet smells to where to put the Christmas tree. In the short term it can be rough at times, I’m not going to lie but in the long term it is stretching both Noah and I and even the Josiah (our cat ). We are learning to be more patient with each other, more respectful in sharing our space, excepting and embracing the closeness. We have always been close but we are like two peas in a pod in the most literal sense as well as the friendship we are building as a result of that closeness. Everything here is personal. In this impersonal world my son needs this, we need this. This is what its like to live in a tiny house. We have been here 4 months, so now I can tell you all truthfully what its like. I realize more everyday it is the best decision I could have made. The snoring and the tripping over each other the always being able to see each other, the kitchen floor is the living room floor, the playroom floor the project floor the yoga floor  and the whole house can become the most amazing train track. We don’t spend our lives cleaning, or buying.  In the end its the coolest most useful place to learn how to human. Humaning is quickly becoming a lost art but here in this little house it is being found.

Good Night Folks

Meltdowns In The Community YOU Can Help- What Every Autism Parent Needs You to know !

The Christmas season is here ! So is the hustle and bustle of Christmas shopping, crowded stores, Christmas lights, love and caring for our fellow human beings. Well we love Christmas here at the tiny house on the spectrum but along with anything with so much stimulation attached to it we can struggle. Some autism families have come to dred the holiday season because it is associated with such high anxiety. With so much autism awareness a lot of us are aware of the struggle. In fact a lot of people understand how challenging it can be to take any kiddo shopping during the holidays, they absolutely get the idea taking a kiddo on the spectrum shopping is that experience times a zillion . With that said even though countless people have told me they really want to help, they just don’t know what to do. Well folks I’m here to tell you ! So if you see us, or any other family with a child in the community and we are struggling here’s do’s the don’ts

What not to do:

Think that you have to be a professional with 25 years experience to help.

Engage with my child ( hes already overstimulated)

Offer me advice (Although I know your intentions are good , I’m not currently working for the mother of the year award, I’m just trying to get what need and get out of the store)

Roll your eyes, suck your teeth, stare or imply your negative feelings to myself or my child. Really its five minutes of your life, please keep your opinions in check, because my kiddo will notice and perseverate on your reaction making this trip and the next trip out and probably the rest of our day even more difficult.

Try to have a conversation with me about your third cousins nephew who has autism, though I appreciate the sentiment and I would love to connect and have that conversation with you, I’m really just trying to get what I need and get out of the store while we still can.

What you can do :

Open a door so I can wrestle my overwhelmed kiddo out it.

Let us by, I’m really not trying to be rude, again I’m just trying to get what we need and get out.

A reassuring smile. There has been times when I just thought “this is it ! This is the moment I will actually loose my mind”.  Then someone shot me a reassuring smile and it gave me just enough will power to get through it.

Let us butt in line. Waiting inline is the hardest part for us, there is candy bars and toys and noise and people in very close proximity to us, all a recipe for disaster.

Offer to help with a cart. Its hard to push a cart through a busy parking lot while trying to keep a kiddo in full meltdown mode safe.

Offer to help with putting bags in the trunk. Trust me, I fought hard to get those items .

Offer to put the cart away.

I know none of these things are fair, I would never ask you to do any of these things for me nor would most parents of autistic children but people have done all of these things for me and my son and they made all the difference in the world for us, that is where I got this list. I wish I knew the names of every person who has offered 5 minutes of their life to help us through 5 minutes of ours. Its never gone unnoticed even if it seemed to at the time. If you could be a fly on my wall you would see that five minutes was very special to me and I tell everyone what you did. Its people who do things like that, that help me to write posts like this, posts that spread the word that people are still mostly good . Thank you in advance !!

Happy Shopping ! 🙂

Not Your Usual Thanksgiving Thankfulness Story

Why would this be your usual Thanksgiving thankfulness story ? This is the tiny house on the spectrum, nothing is your usual around here and that is the first thing I am thankful for. What else  am I thankful for . I’m thankful that I have found a place in my life were I can be me and stand for what I believe in and still be flexible enough to love people who believe diffently from me (I haven’t always been that way) I’m thankful that I no longer worry about what other people think to the point I’m tied up in anxiety. I’m thankful that on my way home tonight there was a big truck riding my butt with their high beams on and a car in front of me going 15 miles under the speed limit, instead of going straight to being up set, I noticed the car in front of me had Florida plates, I thought to myself they must have been terrified of the winter roads. The guy behind me forgot to hit his dimmer button and really he wasn’t on my butt, his butt was just big. I am thankful we were able to spend time with family and Noah did not meltdown even one time. I’m thankful for my 13 year old car and quarter tred snow tires, I know that I am doing the best I can and these things keep me depending on my faith and have given me the experience to know that I can. I’m thankful for being alone because if I ever get married again I will not take that gift for granted. I’m thankful for this story , this journey and that you are here right now sharing it with me, it will make us both stronger people. Most of all I am thankful that there is a God that is bigger than all this and he is looking down on us, he is standing right beside us through all of this and he loves us….he knows the whys and the why nots and he is working everything just the way it should be because he knows the end of the story.

Happy Thanksgiving Folks !