Our Autism world

Every household, every set of kids and parents’ world with Autism looks totally different from the next. Some have school and some therapy. Some baseball teams some video games. Some are filled with words some are quiet. Our world is so full, and I’d love to share some of what it’s filled with. 🙂

Our world with Autism is filled with preschool and church and dancing and music. It’s filled with McDonalds and pizza and pancakes and bananas. It’s filled with bubble baths and movies and stuffed animals and snuggles. And jammies and favorite books and laughs and hugs. It’s filled with words, some that make sense and some that don’t and some that take a very long time to master. It’s filled with transitions from thing to thing and place to place that are sometimes really hard and with repetitive questions about our schedule for a greater part of the day.

It is filled with noise and light and smells and sounds and sometimes these things are really hard to push past. It’s full of toe walking and jumping and flapping and spinning circles when we are excited. It’s full of swimming and dirt digging and car playing and kung fu. It’s full of emotions that come very heavy in waves and sometimes not at all. It’s full of drawing and coloring and learning to read and write and frustrations because these things are super hard.

It’s full of excitement for things like birthdays and fireworks and morning prayers and car sing alongs. It’s full of adventures to the zoo and the discovery center to the park and around the corner to Walmart for doughnuts. It’s full of abcmouse.com and Anamalia books and spiderman and legos. It’s full of smiles and frowns and yells of joy and tears of pain and frustration.

But more than anything else listed, our world is FULL OF LOVE. Between one another, we show it to our neighbors, the homeless, our extended family and our teachers and each other. Our friends and animals and the grocery store clerks and waitresses we encounter every week. The love is what makes the good great and the rough patches easier to pull through.

Living in a household driven by speech delays and sensory issues and stimming and constantly having to repeat conversations is draining, both mentally and physically. I’d take away every stutter, flap, nipple pinch, loud noise and bright light that Leo can’t handle in a heartbeat. I’d take away every struggle Max has with his words, his head hitting, his spinning and his toe walking so fast. But it is who they are. And it’s okay. And it’s okay because we love.  Our family is just like everyone elses, with kiddos learning their footing in this big old world and teaching their mom and dad how to open their hearts and minds even bigger to accept them as they are.

I’d love to hear what your world with Autism is like. 🙂

lets light it up blue!

 

More worry. Always with the damn worry.

We had Max’s Psychology evaluation with our local regional center. The Psychologist was the same initial psychologist that did not diagnose Leo with Autism. ( we went back a month later and he was diagnosed within minutes of a different Psychologist meeting him) So I have my reservations with his decision.

We also had his evaluation with our school district. They blew through it. Parts of it made me uncomfortable because they assumed he knew things without testing him. Is he smart, very much so. But there are problems, concerns, issues. And I can’t figure out how to help him right now.

His speech is slipping backward more in the past week. He is losing more initial letter sounds, he has “language” right now but most of it is not recognizable to most people. His current speech teacher said this week with his lack of words she was able to hear a very pronounced lisp and is wondering how much of that is effecting the rest of his attempted language.

The Psychologist through the regional center said he was going to write his report that his speech delay is still a huge concern and we would not lose funding for speech services. Then last week our liaison tells me that they never have funding for children over 3 for speech services. So we lose his regional center help in a month. We have an IEP meeting with the school district next month, but if they don’t find enough of a delay he will not be given services through the school district either. So there is a chance that my child, who still cannot communicate and has an overload of sensory issues will lose all services next month and I don’t know how to help him.

There are so many things with him that are worrying me.

His hands are clenched in fists almost all of the time, he can’t speak in understandable sentences, he can’t answer simple questions a better part of the time, he melts down when he gets frustrated, If a bath towel touches him he screams, washing his hair is like a wrestling match, he can’t handle that water on his head.

Every interaction with him ends up like a speech session. Trying to get him to slow down and very intentionally make his sounds. But putting them together it doesn’t happen. It’s like his mouth literally will not form certain letter sounds. I watch him fight and fight and then get frustrated and shut down. When he shuts down, it’s over. I can’t get him to even try again.

Trying to get Providers and Insurance to acknowledge his sensory processing issues is hard. And his sensory issues are so outside my scope of knowledge. Even with reading and listening to his current O.T. and trying all kinds of things I can’t get a grasp of his problems. I can tell you what sets him off, what he can’t handle. I can tell you how I try to make him comfortable with any of these things, but it doesn’t last long or at all and I feel defeated.

I want him to be able to talk to me, to tell me that something hurts or that he just doesn’t like it. I just want to be able to communicate with my little guy, and I can’t. And I don’t know how and right now my spirit is pretty squished.

So pray please, that we get some help so that I can continue to learn to help him learn and grown.

“momma whats for tomorrow…”

This is the first thing out of Leos mouth every morning. If he wakes up at 5 or 7 the first thing he always asks is “Momma whats for tomorrow?” Tomorrow, this time is his birthday, he turns 5 and gets to have friends and family have ice cream with him at our favorite ice cream “store”

This morning he flew, like faster than the speed of light flew out of his bedroom, naked and needing to go pee with a GIANT smile on his face:

“MOMMA, WHATS FOR TOOOOOMMMMOOOOOORRRROOOOWWWWW????” *bounce bounce bounce*

“well bud, it’s your”

“ITS MY BURTHDAY!!!!! why I gonna be 5 mommma, my burfday at the icecreamstore? wif my fwiends? and da minions? momma? TOOOO MORROOOWWWWWW??????? THATS CRAZY!”

Totally dude, it’s totally crazy. These past 5 years have seemed to move so dang fast with a learning curve the size of sun. My excitement today comes from his realization of time, and dates and the progression of both. Last year we talked for a week about his birthday. He had tutors that made his birthday week so special and then we capped it off with a party and Spiderman.

This year I told him about his birthday party about a month ago. He’s been asking the date, looking at our giant fridge calendar and counting to the square very boldly labeled “LEO IS 5”. About a month ago I got him to tell me why he needs to know what tomorrow is and what it is going to bring. He told me he gets scared if he doesn’t know. Usually we have a 10-20 minute long conversation every morning about what tomorrow is, what today is, what we are doing today and tomorrow. I’ve thought about bringing back his visual schedule, but I love how this instigates a conversation and he has to stop and think. If we’ve already talked about it 2 times I tell him I am all done but he can tell me what we are up to today and tomorrow, and he usually recalls it all pretty spot on.

So today, on the eve of his BURFDAY I’m sure the entire world will be told tomorrow is his day, that he is going to be 5 and that he is so excited. And he should be, because he is pretty amazing.

 

Seasons of change, not just summer to fall

California is finally getting the memo that it is in fact autumn. It’s still a smidge confused but the brisk mornings are a nice way to start days. But weather and month changes aren’t the only things that are changing around here. Surprise surprise. (One day all I’ll write is- everyone is alive and nothing has changed and that might come in about 35 years….)

Leo is still majorly rocking preschool. His questions, conversations and general talking is loud and never ending but I love it. Even when it’s 5am and I don’t feel well. He tells us when he’s excited and happy and angry and sad, but never when he’s tired. 🙂 admitting that at 4 would for sure be the end of the world. Wednesday we have his first Parent Teacher conference. I can’t wait to hear all about how he’s doing. With all of the advances he’s making, regulating (stimming) has become more pronounced. You can tell it’s totally involuntary movements and it’s amazing how it helps him get his words out when he’s excited or calm him when he’s upset. I’m proud of him. He’s understanding his own body and that is HUGE.

Max is talking up a storm. His fits are more appropriate to being 2 or tired or a boy that just wants to throw pumpkins. His therapy is changing totally. We are actually backing out of ABA and he will be having more focused therapy to work more on speech and O.T. for some super testy sensory issues. I get one on one time with him to talk and read and sing and play with playdough. I love it. I’m proud of how he wants to be a big boy. He wants to go to school with Leo. Wednesdays are library day and he just loves it. It’s slowly coming together for our boys.

Last Wednesday was a hard day. Max spiked a fever and had a seizure. It was definitely the scariest thing I’ve ever seen. He was purple from not breathing, he was unconscious for way too long and when he finally came too, he wasn’t Max. It was like the sparkle in his eyes was gone. It freaked me out. I just wanted, no I needed him to say “momma”. If he said that somehow I thought it would all be okay. He slept most of Wednesday after we got home from the hospital. And Thursday morning it was like watching a miracle unfold.

He woke up, happy camper style, walked into the living room and started talking. 2-3 word sentences. Words he’d never said before. Rewind to Wednesday night when my husband asked me very honestly “when enough is enough for our boys”. They have had so many hurdles already and we just need them to be able to be. I feel like God hear him. This was his way of saying, lemme show you that things are going to be okay.

We had already made the decision to pull him from ABA, but his communication becoming so much better since Thursday made it easier for me to confidently remove him from ABA services this morning. Because I felt God saying, you’ve got this because I’ve got you. And I am so thankful. I am thankful for what ABA did to help our boys, I am thankful for my husbands teamwork with raising our children, I am thankful for the tutors that are more like family and I am thankful that when it feels like we can’t handle another thing that God tells me, I got this. Because you put your faith in me.

I know there are lots of people that don’t believe or are skeptics about faith, but I’ve gotta tell you in my shoes it’s a real deal.

Now I’m looking forward to the next season and what it will bring to my family.

Break? Who gets a break?

No one tells you when you first become a stay at home mom that the work you did, and were paid for, is NOTHING in comparison to the work you will be doing at home. That the work at home is never ending, lacking thanks, expected, demanded, 24 hours a day 365 days a year. There is no lunch break or vacation time. That trips to target alone become the most amazing part of your month and that when you leave for an hour and a half you will come home to a disaster and your mild relaxation you just achieved will be squashed the minute you walk in the door. That every morning, even if you try your hardest to have the house picked up the night before there will be dishes in the sink, there will be toys randomly stuck places and a mountain of laundry that you know you tackled all of just the day before. Your mind never turns off, sleep isn’t restful and holiday stress adds to it all. There is always something that needs to be done, someone that needs something or to be taken somewhere. A meal to be cook, cookies to be made, therapy to be ready for, school to get to on time and appointments to fight for. Always something.

2 1/2 weeks ago we headed off to the Pediatricians office for referrals for the boys- none of which have been handled yet. Last Friday I had to take Leo to the E.R. for tummy issues- they ran tests, all of which came back fine there are no infections, his blood counts and iron look fine. But something is wrong. And until we get a damn referral from the doctor the G.I. Specialist scheduler won’t even talk to me. So now he won’t poop, at least he won’t poop in the toilet. He will poop in his pants. GIANT potty training step backward. And frustrating and gross, but I get it, I’d be pretty potty shy after having strangers look at my butt too.

Max is trying to communicate, so very hard but it’s just not happening as fast as he’d like it to. So he throw fits. Epic meltdowns. With a scream that could break glass and gives me an instant migraine. But I don’t always know what he needs. Pair that with his not wanting to sleep unless his daddy is holding him. Yeah so daddy works, and Max needs a nap during the day, but refuses to take them because daddy isn’t here to hold him. I’m not good enough to rock him to sleep so the screaming starts and almost doesn’t end. And it gives me a migraine almost instantly.

I’ve said it before and I totally mean it, I get so mad when I’m talking and my words aren’t understood so I get where both of the boys get their anger with lack of communication, but damnit. I read to them, I sing to them, we talk, we walk and talk. But it’s not working, and I don’t know how to fix it. Got a call from Max’s advocate at the regional center (the place that is suppose to get us started on speech therapy and motor skill issues for him) yesterday. The gal was very nice, but she was the 4th person I’ve told that Leo is also a client of theirs and she is the 4th person that has told me that they like to keep siblings with the same advocate and someone would call me back. Sigh. Broken communication from the place that is suppose to be teaching my children to communicate. Maybe that’s part of the problem.

I have overloaded myself with projects, as per usual and all I really want to do is cross stitch and drink coffee. Cross stitching relaxes me. I love the repetitive motion. I love how pretty the thread looks against the background, and how at first it looks like an abstract piece of art but by the end is something so beautiful. But I can’t. I have that mountain of laundry to tackle, presents to finish and wrap, cookies to bake, dinner to fix, appointments to take people to, therapy to prepare for, and a house to clean.

But there will be a day where I can. And when I can I’ll thank God for the break that I am so desperately in search of now.

Max

Max is 20 months and now 3 days old.

He tested at 21 months for gross motor skills- the nurse said you can tell he has a big brother to run after, 18 months for fine motor skills, 13 months for receptive language and 11 months for expressive language. He also failed his mChat Autism screen.

What this all means. He is developmentally delayed pretty much across the board.  I knew his language was behind but I didn’t think by this much. It does become more apparent when I see friends kiddos that are the same age and hear what they are saying and realize that Max isn’t even close to matching 50% of their words. The mChat screening isn’t just the child is not meeting these milestones, but the lack of certain “normal” characteristics. There are 20 questions, 5 of which are “crticial” (put the risk factor up high) anything over 3 answers missed out of the twenty- or any two missed in the critical category scores your child as having a risk for being diagnosed at age 3. Max missed 9 total.

The Providers that evaluated him yesterday said they think with early intervention he will hopefully pull his scores up. That it seems like he has more words than we with he does- they are all just sounding the same right now, that maybe with finding his words his aggression and head hitting and screaming will relax and we can see if there is actual concern. His eye contact is good, he seems to understand things some of the time and can follow a simple command every so often.

So now we wait to be assigned an advocate- they are going to try to get him in with Leos so I am only having to have one contact person. And we wait to be placed into a place for therapy.

So I promised I was going to be honest right? Here goes. (I want to preface this entire next section by saying that I am fully aware that my boys are two different beings, that their journeys in life are different but there are some similarities in them right now that shake my core)

Max is almost at the age that Leo regressed. I didn’t realize it at the time, but looking back there was a definite marker for stopped progression in his everything. When  Leo was Maxs age he had eye contact, he had lots of labeling words, he was sweet (still is) his tantrums seemed appropriate for where he was at and what he was doing. Then everything stopped. He lost his eye contact, he stopped gaining words and started making more sounds. Things that he was fine with made him have a full body melt down. he couldn’t function around other kids. We went trough his evaluation-( he was about 26 months old when we found out he couldn’t hear, then eval then tubes). and the same things were said- he’s smart, he failed his mChat,  once his tubes are settled and he can hear with some speech therapy we should be able to bring him above all of his deficits. And he gained words. And when the words came so did other things I wasn’t expecting.

Then came the sensory issues- that he couldn’t tell me what was wrong but he couldn’t and still sometimes can’t function in certain situations. I have had to restrain him more times that I would like to talk about, physically to stop him from throwing himself or something at another person. There are stores we just don’t go to because I can’t handle both of them having a melt down. Leo is strong, and with that when the melt down comes and I have things thrown at me, or I’m being hit, or trying to pick him up it trashes my body. He is 54lbs of tank child, add in flailing and punching and it feels like 400.

Most people don’t see this side of him, because I keep a tight reign on him when we are out or we pretty much only go places I know we can have a chat if we need to and it won’t go into fully hysterics. So what if these same things happen with Max?

How in the world is there enough time to get them where they need to be, to get them both the help they need, to find the places he will feel comfortable, then try to get them both to be comfortable in one anothers comfy places so we can leave the house. How am I going to deal with the looks and the comments from people that don’t understand when they are BOTH having a rough time. How am I going to be able to make them both know how special they are, how it’s okay and we will work hard but sometimes Mommy is going to cry, that sometimes Mommy isn’t going to handle things the right way. That sometimes Mommy isn’t going to know how to help them. How?

I am scared

We made it through Halloween!

I know, I know- it’s fun, it’s full of smiles and spookies and friends and treats. Well it was this year! (so happy about that). The past couple of years have been struggling to keep costumes on, wanting to go into peoples houses and me running after Leo while trying to make his way through  (thank goodness it was just two of our neighbors that adore him). But this year it was different, this year he is 3 and excited and talking and understanding when I tell him that we aren’t going to walk into peoples houses- even though he did ask before ringing doorbells.

We made it to 4 houses on our block this year- past years have been 2. He helped me hand candy out to all of the kids that came to our door with an excited “HAPPY HALLOWEEN- TRICK-OR-TREAT-HI FRIENDS” every time. And then, he met “Spiderman” and was totally mesmerized. He grabbed candy from our bucket, looked up and there he was- in all of his about 10 year old Spiderman glory. Leo’s eyes got big, he stopped dead in his tracks and with an adoring voice said “Hi Spiderman, wow”. As  Spiderman was walking away he proclaimed “Momma- look its Spiderman, Spiderman Momma!” It cracked me up, as well as Spidermans mom.

He got to be around kids and teachers in costumes at morning ABA, and did great. This has totally jazzed me to what this holiday season is going to be for him. Exploring, learning, wanting to see new things and be part of things that he was totally unsure of last year. We started talking about Thanksgiving, and I am hoping it will be a jump off point to tasting new foods. I think we are going to make some fun crafts for our house and Oma and Papas and Great Grammas.

Max, just wants to be like brother. He’s picked up a few new words. He doesn’t seem to use them many times over but a few are coming none the less. So I’m excited for this Holiday season. And that I totally made Leos costume. (He told me 3 days before Halloween his didn’t want to be a hot dog, he wanted to be a Bat. Not Batman, a bat “with the spooky hands and the fly momma, the fly”

So a Bat he was.

Rollercoaster week

These guys. I have to remember when it’s a rough hour, hours, day, days or week- they are why I do what I do. They are what my life is about. They are my everything and I thank God for putting them in my world.

 We had a few rough days with our Leo, but overall it was a great week for him. We had his first monthly meeting with his whole ABA team. Directors, Supervisors, all of his tutors. They all agree that he is totally rocking everything they are throwing at him- with Art and Circle time being the exception. They brainstormed some new ideas of how to tackle those and try some new things. They brought up again wanting to have some cube chairs here for therapy. Those things are crazy expensive- and I can’t just buy one because the wrestling match of the world would end up taking place over said chair. They also mentioned a swing- they look kinda like a deflated bean bag chair. We are on a tight income and it’s hard to come up with $300 dollars for things, I can try but it’s rough. I don’t have to. They have grant money to help us with the tools we need for Leo. I AM FLOORED. I sat in the meeting with the director telling me this with my mouth open and looking and sounding like a total moron. Having this team of amazing people working with Leo to make everything about him stronger is a blessing, having it be totally funded through his insurance is a Huge blessing, having something like this happen is a miracle.

And Max. Oh Mr. Max. It’s been a very rough week with Max. Gas pains, hitting, kicking, general tying to beat down anyone he comes into contact with. Oh wait, nope just me. This season with him will either make me the strongest woman or break me into a million pieces. Trying to hard to get words to come out of his mouth is a no go so far. I know he’s frustrated , I watched this same frustration when Leo had a hard time talking, Max is getting more and more aggressive the more he can’t communicate.

I’m hoping to at least calm his heart in the next few weeks, but until then it’s going to be rough.

Now- pumpkin chili time.

Delayed speech, big lil dude and the sweetest 3 1/2 year old on the planet.

Max had his well visit, he’s a big boy. Our Peditrician said he’s on the path to being bigger than Leo and Leo is a DUDE. (My thoughts on purchasing a grocery store and a pants store to get us through the teenage years may need to come into reality..) Max measured in at 31lbs and 33″ tall. He is solid, and smiley and only has 2 words. It seemed like he had closer to 5 maybe a month ago, but “wassat” and “momma” are it for right now. So I racked my brain trying to remember where we were with Leo at a year and a half. (I know you can’t compare your kids, but he’s all I’ve got to go on)

Leo never had a problem with words. He had lots, never in sentences but lots of words- labeling words. And then one day or a month went by and there weren’t any new ones. And his Leo jibber jabber was in the forefront of his speech. Max hasn’t ever really had words. Our Peditrician referred him to speech therapy. And I’m worried. He is what he is, and he will be amazing and full of love regardless, but damnit. I don’t want him to struggle with words like Leo still does at times. I don’t want him to go through the frustration of not being able to tell us what he needs.

I started with the PEC book with him today. It’s going to become part of his and my one on one time while Leo is at “school” 3 days a  week. But, I’m worried. A lot.

Leo rocked his first day at the clinic. He has different tutors when he is there. He played with another little gal there, and I guess the ball pit was his favorite. I am really excited for some sensory integration into his therapy. Bouncing, ball pit, finger paint whatever. He licked a baby carrot and some ranch dressing this week- and last night ate a quesadilla with some apple in it.  Made me a super happy momma.

When we were leaving the clinic he stopped, looked up at me and said “momma, I have friends”. It’s a good thing I had my sunglasses on because I cried like a baby. I have been so worried he wouldn’t be able to make friends. It was always so hard for me as a kid to make friends and I don’t want that for him. I want him to run and smile and laugh and play. I want there to be kids at his birthday parties, and I want him to get invitations to different things with his peers. Being accepted. I want him to be accepted.

It’s been a week. I’m happy for a zoo trip tomorrow and some family time Sunday.

Sea horses, see horses, Free Willy and paint brushes

One of the first non animated movies the boys are willing to watch- Free Willy (first is Hocus Pocus). I shouldn’t be surprised with the infatuation Leo has with all things from the sea. A trip to the Monterey Bay Aquarium needs to happen soon. But I am afraid he will want to live there.

The Big Fresno Fair is in town and we headed to it as a family. I was trying to explain to Leo that we would “see horses”, you know the racing kind (horse rasces are a big deal at the fair) and he replies “Yes Momma, and whales and dolphins and octopus and barracuda (that is pronounced ‘bayrnacoonta’) At first I was totally confused, hes telling me this as I’m tryingt to get the boys and myself dressed and out the door for an appointment.

We get in the car and he’s still talking about it and when it finally registered I cracked up. The English language- downright confusing. On the heels of seahorses comes the boys first time watching Snow White. Animals and music, can it get any better? Perhaps, if Leo sang Heigh, ho correctly. Nope, it came out “My Ho!” over and over with Max as his backup dancer. We might have the future Eminem on our hands. I couldn’t stop laughing.

Tried to correct him numerous times but he is very sure its “My ho”. Oh goodness.  And Max smiles and laughs and dances because he wants to part of everything his brother does. He might not want to get in the swimming pool, but he wants to shoot his brother with the hose. He might not be hungry, but if brother is sitting at the table he’s right beside him. Peas in a pod, terrible twosome, louder than the monkeys at the zoo, Leo and Max.

Max is a booty shaker and singer, he has amazing taste in shoes and always brings them in pairs and will try any food put in front of him. He helps unload the dishwasher, “feeds” the dogs and demands snuggles. I can’t get many  words out of him or get him to go to bed without a bottle but it’s all okay. These things will be gone sooner than Iam ready for them to be gone. Shoot, he was just a baby last year at the fair. Slept the whole time in his infant car seat. This year he was so excited to see the animals.

Too fast, its all going too fast.