Struggles, triumphs, and everything in-between with two boys on the autism spectrum.

One Last Overhaul

if you've met one person with autismIt’s totally official. I’m an autism mom. Both boys are on the spectrum for sure. I’ve known it and accepted it since day one. Friends, family, doctors and school admin have been in denial, which in turn, made me second guess what I knew in my heart all along. Because I second guessed myself I neglected my boys’ needs. That set us back tremendously. So no more follow the leader. No more letting people tell us what they think based on stereotypes and what they see in the media. No more feeling ashamed when I tell people my boys have autism because they don’t “look like they have autism”.

No more making excuses or feeling embarrassed by their loud noises or constant chattering (I yelled at a man in the grocery store the other day for giving my youngest son a dirty look and shaking his head at me. Don’t mess with mama bear!).

My kids might look at you when you are speaking to them, they might hold your hand or ask for hugs, they might smile and laugh at something funny. Autism Spectrum Disorder can affect communication, social skills, and behavior in varying ways and degrees in each individual. One of my boys has been speaking since he was 9 months old. My other boy has significant speech delay. But they both laugh at my stupid jokes. It’s a spectrum. There is a famous quote in the autism community by Dr. Stephen Shore: “If you’ve met one person with autism, you’ve met one person with autism”.

We are a proud autism family! Welcome😊

Blog 2.0

I have neglected my blog so much. My initial intention in creating the blog (I Heart Asperger’s) was to write daily, or at least weekly, as a way to vent and to share, and to connect with others going through similar struggles. When I finally understood and accepted that I was not a bad or neglectful parent and that my son was facing some real and serious challenges I had no clue about the who’s, what’s, when’s, where’s, or how’s I was up against. Who will help us? What should I do now? When will life calm down? Where are the “experts” that are supposed to help us? How the hell am I going to A) pay for all this B) find time for everything and C) breathe! That’s when the blog came into play. But who knew life would get in the way of figuring out life?

Somewhere between school meetings, OT (occupational therapy) appointments for both of my boys, work, and life in general, the blog has gotten away from me. But this might be a good thing. I have such a clearer perspective now…

imageMy sons initial evaluations’ and diagnosis’ were pretty shocking. I had recognized some of the characteristics of high functioning autism in him and that is what led me away from our general pediatrician and to a developmental pediatrician, and then a neurologist. The diagnosis from both were similar- high functioning autism (or Asperger’s), motor skill delays, sensory processing disorder, obsessive compulsive disorder (OCD), ADHD, and anxiety. Yeah, that’s a lot.

My son has been working with an occupational therapist (or OT) for several months now. The initial visit and consultation was supposed to address the Asperger’s syndrome and his sensory issues. How can we get him to focus, develop stronger motor skills, develop social skills, and so on. After two months or so our OT pulled me aside one afternoon and gently suggested another evaluation. She cannot diagnose but she has been working with autistic children for years. She doesn’t see autism.

We have been fighting with this since day one. Is it autism or not? As he has gotten older, and spent hours in OT, some of the characteristics we recognized over a year ago have all but disappeared. He still has obsessions but he has been stuck on Legos for over a year. Prior to Legos there was a new obsession every few weeks (airplanes, scented candles, road signs, volcanoes, etc). He has trouble with social skills and has trouble sharing an interest that isn’t his own but he is much more open to listening to other people now and learning from them. So we just aren’t sure. What we do know is that he struggles daily with sensory issues, which leads to anxiety. And that can lead to issues with his attention and interacting with his peers, which can lead to loneliness and confusion, which can lead to an afternoon of either total withdrawal and sadness or outright anger and physical attacks on me and anyone else in the house.

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So the blog has had a bit of an overhaul. Instead of calling it “I Heart Asperger’s” I have changed it to “I Heart SPD” (sensory processing disorder) because that is the only disorder we have been able to accurately pinpoint.

Every day presents different challenges on different levels. So from now on the blog is dedicated to all of our daily struggles whether they stem from Asperger’s, sensory issues, anxiety, ADHD, or just a typical day struggling through life.

 

Brother vs. Brother

Siblings argue, fight, have disagreements about who is going to watch what on TV, who is supposed to take out the trash, who touched who first, and so on. I have fond memories of all of these things happening between me and my sister as we were growing up. But all the arguing and fighting aside, we loved each other. We supported each other. We cared about each other. We stood up for one another. Even at an early age I can remember playing with my sister who is 4 years older than me. Despite different tastes in games, toys, and TV shows we enjoyed each other’s company. This is not the relationship my sons have.

imageMy youngest son, who just turned 2, has some developmental delays. It is mostly speech but it is social and emotional as well. He doesn’t hug, kiss, or hold your hand. He says 15-20 words (most of which only my husband and I can understand) but he mostly babbles and screams. Yes, screams. All day. He pinches, pulls hair, bites, slaps, head butts, and squeezes. He doesn’t play with anyone at all. He prefers to sit by himself. If you try to engage him he will run away. He has a really difficult time falling asleep at night. He only sleeps 7-8 hours at best and never takes a nap. He spins, likes to watch string as he waves it around, walks the same pattern over and over again in the living room. Yep, sounds like he’s on the spectrum too.

My oldest son, who I write this blog about, hates his younger brother. He has used the word hate. He has asked me why did I even have him. I know that siblings act like this. I have plenty of personal experience. But the total lack of bonding and social interaction really upsets me. I cannot leave them alone together for even 10 seconds. Older brother is always physically hurting younger brother. He will push him, kick him, hit and punch him, pick him up and drop him on the floor. Like I said, they cannot be left alone together. Older brother also has zero empathy for younger brother. If he gets hurt, he doesn’t show any emotion or ask if he’s ok. He honestly doesn’t care. He also never speaks to younger brother unless he is angry.

I can totally understand why my oldest son gets upset. Who wants to hear screaming all day? Who wants their hair pulled? It is unbelievably frustrating living with two boys who would benefit from sharing each other’s company but act as if they live a million miles apart. Everyday I ask myself how in the world I am going to get these two boys, both of whom have trouble with social and emotional skills, to interact peacefully. I can only give my son the “as soon as he gets a little older he’ll stop pulling your hair” speech so many times. I don’t think he believes me anymore.

I have arranged for in-home therapy for my little one and it will start soon. I am also considering putting them both in occupational therapy together. My oldest son goes every week and they pair him up with other kids to practice social skills so maybe they can share some time together. I can only hope and pray that between now and then my house is as peaceful and calm as possible.

 

New Neighbor Anxiety

Several weeks ago the family next door to us moved. As soon as I found out they were moving I was stricken with anxiety. My son was going to freak out. I waited as long as possible and finally gave him the news. He didn’t panic as badly as I thought he would but he was upset. Keep in mind the family next door was a young couple with a small baby and we never really spoke much. We would say hello when we saw each other outside and we’d occasionally gather in the driveway and talk for a few minutes. That was it though. My son wasn’t going to lose a best friend or anything. It was simply the change that was about to happen. Everyday since they moved he asks where they are and if they will come back. He’s been struggling for weeks.

You would think that I would have been thrilled to see someone moving in earlier today but no, I am not. I am glad the house is no longer empty and dark at night but I do not want to go through this again. For him it is the anxiety of the old neighbors not being there topped with the anxiety of not knowing the new neighbors. For me it is the anxiety of people not understanding. It is really hard for most people to understand, let alone accept, my sons behavior and personality. It’s so, so awkward when you are around new people and your kid isn’t able to control his body, he won’t listen, he can’t stop interrupting, he touches everything (and sometimes people), he rolls on the floor, and he chews his fingers (and just a second ago my curtains). Most people see this kind of behavior and immediately judge me. He’s a brat and it’s my fault. I understand how they feel. We’ve all been in line at the store or have been at a restaurant and have given that poor mom or dad the stink eye because of their loud, unruly kids. I get it.

So to the young mom and her sweet, calm little girl about to enter our chaotic world, welcome!

Working On Life

It’s been a while since I’ve posted anything. It’s pretty hard for me to write when I am exhausted and trying to prioritize eating, sleeping, showering, marriage, laundry, doctors appointments, work, school….. I know, I know. Excuses, excuses.

So not much has happened with school since August but the little changes are all positive. My son has stopped crying everyday, he’s eating lunch (or at least he says he is), the teachers and other staff are giving me daily and weekly updates, and so far everyone is on board as far as working out his IEP. Even though we had two separate evaluations and diagnosis from a neurologist and a developmental pediatrician the school decided that they wanted to complete their own set of testing and evaluations. That’s ok with me but I was hoping things would move faster than this. We have an appointment next month to discuss the results of the schools testing. So basically his IEP won’t be put into place until the end of the year. Better late than never I guess.

We are still struggling every day with lack of sleep, lack of appetite, meltdowns after school, being sick with some kind of funk every couple of days, and making friends. I quietly celebrate the little triumphs everyday, like getting out the door every morning without having an argument about how many stuffed animals he can take to school or picking him up in the afternoon and getting him to eat a complete meal before bedtime. But there are struggles every day. Every day is like riding a roller coaster from hell. The day might start off really quiet and calm and all of a sudden I am being screamed at or punched over and over and over. It sucks. It sucks that the teachers, administrators, and doctors never get to see that side of him. They see the friendly, cute, fidgety five year old and wonder what the hell I’m talking about. “Meltdowns?” they say. “What do you mean? He has temper tantrums?” Sighhhhhh….. If they only knew.

On the flip side, our occupational therapist has been a blessing in our lives. She has gone above and beyond to help my son and to help me. They have an awesome connection, he looks forward to seeing her every week, and most importantly, he respects her. She has given us ideas and advice about sleep, eating, social skills, classroom skills, and what to do when he is having a bad day. I am so glad we found her.

A few months ago I was completely discouraged. I didn’t think my son would adjust to school or homework or be able to handle social situations. He struggles everyday, there’s no doubt about that. But he’s maturing and he’s handling everything so well. I am so proud of him.
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A Really Good Day Update

He cried a lot today. It looks like he has two black eyes (again). One step forward, three steps back.image

 

The first few weeks of school have been a drag for my son. He cried everyday for the first two weeks, he hasn’t been eating his lunch or snack everyday, and he isn’t finishing his work in class. The cafeteria is too loud and so are the bathrooms. Apparently the toilets are super loud when they are flushed and he has to put his hands over his ears. Not fun. And although he has made a few friends he has trouble with social skills.

imageWhen I picked him up yesterday he said he had the best day ever. He was excited and wanted to share everything with me. He begged me to hurry home so he could play outside and blow bubbles. Awesome, right? I thought so too until he said he had a substitute teacher and then later commented on how he wished he was in a different classroom. Hmmm?

He hasn’t cried at all this week and every morning we have been greeted with the most beautiful and inspiring sunrises, and a few cool surprises. A hot air balloon passing over the school, a fawn coming out of the woods at the exact perfect time for him to see it, his favorite song on the radio when we leave the driveway, and his “best” friend at school wearing the same shirt as him on one of those days that could have been downright horrible. Despite wanting a different classroom and having trouble with the noise, school is actually going pretty good for him. And to whomever is giving us a hand in the morning with the most awesome surprises and coincidences to keep his mind off of being nervous and scared-thank you, thank you, thank you!