I haven’t blogged in 3 years. I know why. I didn’t want to deal with what we were dealt. We stopped going to the apraxia walks last year because I wanted us to move past it. Selfish perhaps but I was procrastinating my feelings for a long time.

Fast forward to first grade.  Pre K stunk.  Luke was in a class that was understaffed and wasn’t able to help his needs.  We pulled him in April.  Kindergarten went very well, his teacher was awesome and determined and patient and communicative.  We were very lucky, for 9 months the stress was at its lowest level, Luke seemed happy, almost.

Now, we are in first grade, 3 weeks in and he’s been sent home 4 times and suspended once. The staff hasn’t been trained on how to deal with all things Luke.  The principal hates me.  We have a lawyer involved.  Being treated as a “bad kid” rather than one with a disability.  Stress is back up to an incredibly high level.  The calls from school are taking a toll on us as a family, we both work so leaving to pick him up us not too easy depending on the day.  Emergency IEP meetings.  FBA done by autism consultant per my request.  Knots in my stomach every school day waiting for a call that says he was swearing or hitting his aide or throwing his shoes.  Sister has said multiple times “I wish Luke didn’t have autism.”  Pulled strings to get an appointment with his developmental pediatrician to see if she has other recommendations.  Luke told me he hopes she can help him.  I will do everything in my power to as well, buddy.

It’s been over 6 months since the last post, how far my guy has come.  Luke turned 4 last month.

He’s chatting it up.  Big time.  I think I’m currently stuck in a lovely, maybe naïve, spot where I feel like everything is going to be fine.  However, there are moments that I remember a really shitty word called regression.  He is slamming doors again, turning lights on and off, I know it’s all stimulating to him and sometimes out of anger but it reminds me of when we first started therapy and how horrible that time was.

He’s in general ed this year which has been helpful socially.   I went on a field trip with the class to the Apple Orchard and definitely was able to tell that he’s different than the rest of the kids (thanks to the slight meltdown the entire way back on the bus) but it’s fine.  I feel that I’ve matured as a parent in the past 6 months a lot.  He knows every kids name in his class and comes home singing songs, he still has a long way to go but has come so far.

Sleeping is still terrible, we have an appointment in a few weeks with a new sleep doctor.  I feel like it will never get better.  4 years of this already.

Little sis is awesome, they have become buddies (most of the time) and chase each other around and argue over Katy Perry and Rihanna.  She has a lot to say too, so the more vocab around the house has helped everyone out.

We had the apraxia walk in August and raised close to $5K for the charity.  Maybe in our lifetime they’ll figure out what the hell causes it and how to prevent it.

Autism Awareness Day just passed and Apraxia Awareness Day is in a couple of weeks.   Luke has Apraxia, Sensory Processing Disorder and Autism.  His Apraxia and SPD are severe, he may lose his Autism diagnosis someday but maybe not.  In any case, what we deal with primarily is Apraxia.  Very few really know what it is, but this is what it means to us.

It means at 4 months, noticing that my baby isn’t as physically strong as other babies.
It means at 10 months wondering why my baby isn’t crawling yet.  Other parents telling me “Oh he’s your first, he’s a boy, it’s normal.”
It means at 12 months rejoicing because my baby starts to crawl but the rejoicing is more of a relief than a true joy.
It means my baby starting to walk at 19 months.  See above for parental feelings.
It means going through 4 doctors to find out that my baby is head banging because he has something known as Sensory Processing Disorder, and that he’s just not “getting used to a new baby sister.”
It means my baby starting Occupational Therapy, Speech Therapy and Developmental Therapy at 20 months.
It means taking my son to private OT and ST while on maternity leave, and spending hours away form my newborn daughter each day.
It means hours of research in the middle of the night while nursing my newborn to find out exactly what all of these new terms mean.
It means people that we were previously close to pull away, even family.  We don’t know if they are uncomfortable or scared, but we are too tired to even find out.
It means sleeping through the night maybe once every 3 months.
It means resentment between my husband and me for who has to deal with waking up with my son every night when he wakes up having full blown meltdowns.
It means an Apraxia diagnosis at 30 months.
It means an Autism diagnosis at 30.5 months although the doctor’s are “on the fence.”
It means going through phases of obsessions with fans, air conditioners, finger crossing and satellite dishes.
It means being so thankful for my mom because she is one of two people that we can trust to handle our lives.
It means being torn between being happy for their “Aunt CaCa” that she’s headed to graduate school, and sad because we’re losing the only other person that we can count on.
It means hitting a plateau at 3 years old and changing to Applied Behavioral Analysis therapy which is 22 hours a week.
It means my husband taking on 2 jobs to cover the out of pocket costs of therapy.
It means that there is rarely a night where both mom and dad are home.  Subsequently, it means our kids being thrilled with excitement when both of us are home, even at the young ages of 3 and 2.
It means starting special needs pre-school a year early.
It means overwhelming guilt for favoring my special needs son over my daughter.
It means not making a big deal about any developmental milestones that my daughter achieves because I feel guilty celebrating.
It’s realizing that all of the anger and frustration and meltdowns are because not even I can  understand what my baby needs, although in his brain he knows exactly what he wants.
It means being completely non-verbal until age 3.5.
It means getting hit in the face, kicked, punch, bit mostly at 3am when he wakes up in a fit of rage and doesn’t go back to sleep for 3 hours.
It means my closest friends are other mom’s I’ve met on blogs or Facebook pages with kids who are similar to my son.
It’s having barely anything in common with my old friends.
It means almost no one in my family understanding even half of my son’s struggle.  Or asking.
It’s cringing inside when I hear other parents talk about their child who is the same age that won’t shut up.
It’s experiencing this word explosion that other Apraxia mom’s talk about and finally having the feeling of HOPE.
It’s having to really concentrate when my son wants to say “go shopping for root beer ” but it sounds like “go sopping woo bee” and being a constant translator.
It means having a pediatrician, developmental pediatrician, pediatric neurologist, ENT, Sleep Doctor, and 9 therapists.
It means the parking attendants at the children’s hospital knowing us by name.
It means not having the worst situation but also not having one minute go by without worrying if my son will be able to have a normal life.
It means absolute joy to hear my son say his first sentence, “More ice cream please.”

Apraxia is a neurological disorder.  Those who suffer from Apraxia know what they want to say but the brain has difficulty coordinating the muscle movements necessary to say those words.  It’s often misdiagnosed, or not diagnosed at all.

Please consider that this is a very real disorder before telling a parent that Einstein didn’t talk until he was 3.

Something that infuriates me?  Bragging about a kid because he’s walking.  Or talking.  Anything developmental.  It’s something that I never would have even thought about before having Luke, but now when I see people posting on Facebook about how smart their kid is because they’re walking at 10 months…it literally drives me mad.  It’s ignorance, I understand that, but it still makes me so mad.  Today it was one of my best friends.  We don’t see each other often, literally every couple years, so she has no idea about Luke’s struggles, and she doesn’t understand that bragging about her kid brushing his teeth has nothing to do with how smart he is.

Being a mom of a kid that started talking at 3.5 gives me the right to be mad, right?  I don’t care if it does, I’m mad anyways. I really should just remember that my friend, along with all other parents of typical kids, are just bragging because they love their kid.  And they’re proud.  But today I am too crabby to give anyone the benefit of the doubt.

Luke’s talking up a storm, it’s truly amazing.  I never thought the day would come but he’s saying “Go get milk” and “so cool” – stuff like that!  His teacher sent me a note saying the he should be in general ed next year, already!  I’m so proud of him, he has worked so hard and come so far.  The feeling inside as his mom is indescribable.  I have such an amount of love and admiration, and he’s only 3.

His behavior isn’t great lately….he has this shrill high pitch scream when he’s mad or doesn’t get what he wants.  We try to ignore but sometimes it’s just not possible.  It scares his little sister.  Heartbreaking.

We were so desperate to help Luke sleep that we gave clonidine a shot.  It didn’t work.  In fact, it made his sleeping even worse.  I believe he was having nightmares, he would wake up screaming and thrashing.  He was sweaty.  We gave it a week and that’s what happened, and immediately stopped.  He is sleeping terrible but at least I know he’s more peaceful and not having bad dreams.  So at this point we have come to the conclusion that he will never sleep and we will be tired for the rest our lives as well.

What a difference the past 6 weeks have made. Luke is saying a lot of words – like A LOT. He can pretty much say his ABCs, granted not many would understand but it’s huge. Poop. Pelican. Gummy. Sucker. He’s really trying! ABA has been focusing mainly on verbal, and the goal is just to get him to make sounds. He just needs the confidence to know he can speak….and he’s begun. The more verbal he is, the more clear it is that he has apraxia. He says road block “rah-jahk” so the speech therapy will be for years but so what. He CAN talk.

His 6 month follow up with the developmental pediatrician was a couple of weeks ago. She couldn’t believe the progress he made. Any thoughts of him being on the spectrum are vanishing, she said he appears to be falling off the spectrum. His sleep is still terrible, she recommended a sleep med which we are literally at our last resort and may just do it. 3 doctors now have recommended it. I hate that it’s come to this but the dude just doesn’t sleep. Sleep is important. Imagine how much more he’ll blossom if he sleeps. You owe it to him. You owe it to yourselves. You’d give him medicine if he was having seizures, right? Being a parent and having to make decisions like this is so painful. I couldn’t imagine the parents of kids with severe illnesses. Heartbreaking.

Little sis is awesome, they hug and dance together now. She repeats everything and loves her baby dolls. It’s so funny to see the difference between a boy and girl. Some day she’ll be convincing her friends to date (or not date) Luke.

I’m hoping 2015 is better. 2014 kind of sucked. My daughter was born in June 2013 so really, 2014 should have been a great year with fun firsts but it did kind of suck. With everything that Luke has been going through, my poor daughter was on the back burner. She even has a UTI right now and I’m feeling so guilty about it because I didn’t even know. Her aunt was the one that figured out something was wrong. I feel like shit because of it, not to mention sad because my poor little girl is in pain and I didn’t even realize it. I’m just so goddamn tired that it’s hard to even function properly.

Luke is still sleeping terribly. I just tried to type up an example and cannot even remember the dates of when things happened. But one day this week he slept from 11pm – 2am, and then from 6am – 8am. Of course I was up with him, he actually got so mad that he grabbed his neck and pinched it and it looks like a little bat bit him. It’s so hard, I don’t know how to handle him when he’s so mad. He knows the alphabet and numbers (side note, amazing right?!) so he is smart enough to know right from wrong. There is no doubt. I don’t know how to deal with him being up in the middle of the night, he just wants to go play but I can’t allow that because it sets a bad precedent. But then I have to deal with him fighting for 4 hours. It’s exhausting. I am getting a headache just thinking of it. My husband works nights and gets home late and is with the kids during most weekdays so he doesn’t get up with Luke. Besides I would rather because I have more patience but it sure as hell would be nice to have one night every so often to just sleep. Last night I slept 12am – 7am, woke up once in the middle because Luke was rustling around for 10 minutes or so and I feel like I slept for 4 days. It’s ridiculous. I don’t even want to know how my health is…

I follow this facebook apraxia page and all these moms say their kid had a huge breakthrough around 3.5 or 4. Luke will be 3.5 in April. I don’t want time to pass but I do…I am so anxious and worried and nervous about the future. What if he doesn’t have a breakthrough? These moms say their kids were like Luke and then all the sudden they start talking. I don’t know if that is going to happen. I think his apraxia is so severe that maybe he won’t talk until much later. And I don’t know how I’m going to be able to help him if he isn’t able to communicate with us. Do I get an AAC device? I don’t know. Maybe we should but am I jumping the gun? It’s so frustrating to not know what is going to happen. He can’t even tell us a story, that kills me. I know he wants to, he has so much in his little mind but he can’t tell us about it. He can’t tell us how he went #2 in the potty on his own and was so proud of himself, he can’t brag about it, he just smiles and then the moment is over. He can’t tell his grandma about it. He can’t tell his aunts about it. He has to rely on us to speak for him. It’s so unfair. Why does this happen to an innocent little child?

I’m just wondering how 2015 will be. Will Luke be able to say more? Will he get more frustrated because he can’t? Will I get my shit together and be able to notice when my daughter is sick? Will we ever sleep through the night again?

I forgot to talk about the holidays. We didn’t go anywhere. It’s way too much for Luke to be in a crowded house with a ton of people ripping presents open so we stayed home. It was fantastic. I had a small portion of my family over a few days after Christmas and that was plenty. Most of my family is good about it, even though very few of them talk about what’s going on with Luke. I don’t know how to feel about that. I’m pretty pissed that only my mom and my cousin and his wife even acknowledged Luke’s walk for apraxia. My mom was there of course, and my cousin/his wife gave a really nice donation and really did take the time to tell me they wanted to be there. I don’t know if people don’t know what to say or if they don’t think it’s as serious as it is. Not sure. My friends are amazing though, we have so many friends that are so supportive. I should count my blessings but today I feel like complaining.

Purple.  Luke said purple.  He’s been saying a few words here and there (car, ball) but purple takes the cake.  He wanted purple pedialyte so he walked up to it and said purple.  He actually let us know that he wanted something out loud.  He VERBALLY COMMUNICATED.  He also answered the phone the other day and said “hello”.

Luke’s dad and I look at each other in a way that no one would ever be able to understand unless they were a parent of a child with special needs.  The fact that he’s started to say words without us telling him to offer us a whole new hope.  We are now hopeful that he will talk.  That he can talk.  I don’t know if it’s ABA or preschool or a combination of both but whatever it is, it’s helping.  Hearing his sweet little voice melts me.

His words aren’t clear and that is classic apraxia, he will for sure need lots of speech therapy but we know that he is capable of speaking.  The fear isn’t completely gone (that damn regression word still comes to mind way too much) but there is a new feeling of hope.  He is so proud of himself when he says a word, he knows what a big deal it is.  I think he’s even more aware because little sis is saying new words what seems like every day.  She says cocoon for christsakes.

On another note, just to be a downer, Luke has had a terrible time with this transition of preschool and ABA.  His sleep is for shit.  He beats the crap out of us and himself just to get out of sleeping.  He has a really short fuse.  He did have a cold and seems to be acting better because he’s feeling better but Jesus.  It’s been rough.  He hit me in the eye twice yesterday and it was like a boot was thrown at me.  I hear “typical” 3 year old’s do this too…

I had a call with his preschool teacher the other day after he finished his 3rd week of school.  The call was amazing.  Luke is catching on to PECS already, much faster than the teachers thought, he is strong willed (that’s a nice way of saying it), compliant, joining activities,…he smiles a lot.  I’m so so proud.  The teacher also said she doesn’t think that she’ll keep him in her class for that long, just because he has a language impairment doesn’t mean he shouldn’t be in general ed.  I knew he’d do good because he learns fast but how. amazing. is. that.

I hate this word.  Hate it.  When Luke is sick, he regresses.  It’s also my biggest fear with him overall.  He’s had a cold the past week and he has regressed as he usually does.  Hits himself, hits us, bangs his head into anything that he can get close to.  Throws tantrums many times a day.  I get it, he doesn’t feel good and doesn’t understand why so he gets angry.  It’s pretty unbearable though, it is actually difficult to control him and when it’s typically just either myself or his dad with him due to us having different schedules, it’s near impossible.  I feel bad for little sis because if they’re both crying, I have to deal with Luke because he can potentially hurt himself.  He’s actually cracked his own head open before during a tantrum.  So poor sis just cries until he settles, the guilt is overwhelming.

He’s been more verbal which is great but since I’m on the topic of regression, it really is a huge fear.  I have followed other autism blogs and have actually stopped following because I can’t handle reading about how the kids were doing awesome like Luke is doing and then they regressed tremendously.  Luke is definitely high functioning ASD, some question if he even is on the spectrum and say if so, it’s at the very mild end.  Some days I agree, some days I think he’s not autistic but it’s his apraxia and SPD that cause the issues, some days I think he is on the spectrum and potentially could regress.  Those days are the worst.  Days where I see him regress and head bang and twist his fingers into weird shapes.  Or lining up his dinosaurs, which he never has done but the past few weeks has randomly done it a few times.  Not obsessively, but when you have a kid on the spectrum you are looking for every sign.  It’s terrible, I hate that I can’t enjoy some of the days of our kids just being kids, and I’m always looking for some other sign in Luke or looking for any kind of sign in his sister – which she’s not displaying any thank goodness.

He completed his first week of preschool and claims that he is having fun.  I had to call off today because of his cold, but I think he is going to catch on fast.  He did with ABA.  But my fear is what happens when ABA stops, will he regress?  Will he be able to adjust to living a normal life?