It's been a bit since I wrote a post here and I thought today would be a good time as we met with the Max man's teacher, therapist and school psychologist yesterday for his IEP evaluation. We do this twice per year and will have another in the Spring.
Of course, I didn't hear what I wanted to yesterday. While Max is highly intelligent when it comes to letters, numbers and a multitude of other things (he can read entire books and recite entire books from memory, crazy!), there hasn't been any improvement in terms of his social skills. He doesn't "connect" with his classmates. He doesn't "gravitate towards any one individual." To put it bluntly, he has no friends. Albeit he is only just about to turn 5, but most 5 year olds at least connect with their siblings, cousins, peers, etc. They are on the brink of asking for sleepovers, choosing who they want to come to their birthday parties. Max can't even tell me when he doesn't feel good, almost everything in life is a guessing game with him. It's exhausting for parents, sure, but I can't begin to imagine what HE is feeling. He is so smart, and we know he understands everything we say, so to think he doesn't recognize his own inability to forge relationships feels foolish.
This meeting was particularly important because we also discussed his upcoming evaluation with the school social worker which will help determine where Max ends up next year.
Our guy will be 5 very soon and that means next August, regardless of his progress in the EELP program, he will enter kindergarten. Kindergarten... I'm already cringing just thinking about it. I don't know if most parents get excited about this milestone, but if I'm honest, I am wholeheartedly NOT. In this case, there is only one word that describes the gut feeling I get when I think about Max being in a "regular" classroom with "normal" kids.
FEAR.
Fear of Max being alone even though he is surrounded by other kids, fear of him wanting to connect and not being able to and what that might do to his psyche, fear of him being made an outcast by some kid who chooses to be a shithead (let's face it, all kids CAN be), fear of bullies, fear of this, fear of that; you get the gist.
My kid has quirks. Some are cute and some are funny, but some can be downright "weird" in the eyes of outsiders, especially kids who are too honest for their own good. If I could walk my kid around in a protective bubble I would, but clearly I can't and he will undoubtedly experience some if not all of my fears in his scholastic future. I know most kids experience these things in life, but the fact that Max can't even speak to defend himself, can't explain his feelings or show kids that he is just like them in mind and spirit, THAT is what makes this upcoming transition so hard for me to think about.
I have felt a heaviness since yesterday that I can't shake. I feel so sad and as hard as I try to not feel affected, I'm a wreck inside. I want to cry for him but that seems foolish because crying over something that hasn't even happened yet is a waste of tears and maybe a little nuts. Yet here we are.
I guess today I am just weak, and screw it, that's perfectly OK. Tomorrow will be better, or maybe not, who knows? I'll smile through it either way because that is what parents do. That is what adults do. Every day brings something new when it comes to Max. A new milestone, a new challenge, and those experiences are what make me strong in a general sense, so there is that.
What's awesome about Max is he doesn't fear the things I do. Max loves to experience new things and new challenges for the most part, he doesn't have hesitation like I do because he doesn't understand the world as adults do. HE is what keeps ME going. THAT is the positive light that shines over any of the dark feelings that pass through my heart.
Friday, September 30, 2016
Friday, July 29, 2016
Autism Every Day
Hi all! So yesterday this video popped up on my Facebook news feed. I really enjoyed watching it because it's a great example of what parents of kids on the spectrum go through on a daily basis. The spectrum is so vast and every child has their own unique "symptoms." And while every parent's experience is different than the next, there is one common theme; ASD doesn't take a day off.
E.
V.
E.
R.
!
Total bullshit, right!? I mean, some days I don't want to pack everyone in the car only to listen to Max scream "Chuck E. Cheese!!" at full volume, over and over and over until he completely exhausts himself in a pile of tears. Some days I want to take the boys to a local event, or the park, or the beach (really, anywhere!) without having to worry about Max wandering off with a stranger, or into a body of water, or out into traffic, or right in front of a kid swinging at full speed on a swing (how can he NOT see them???). And some days I definitely don't want to listen to him recite the same lines of his favorite videos over...and over...and over...and over again.
I have good days and bad. Some days I laugh at my son's behavior (I mean, what the hell is going on in that little head of his!?). Some days I cry. I cry for myself, I cry for my husband, I cry for Max's little brother, and I cry for Max. We are all affected. We have all had something taken from us because of this wacky disorder. On the other hand, we have all been given an opportunity to experience life in a very unique, albeit challenging, way. I guess that's pretty cool (gotta stay positive!).
The women in this video are amazing and brave. Seeing them go through some of the things I go through makes me feel...better? I'm not the only mom whose (almost) 5 year old is still not potty trained (please, kill me now!). I'm not the only mom who worries about the looks from strangers when Max is making weird sounds, flapping his little hands around making strange gestures and generally just being...himself. I'm not the only mom who gets their hair randomly pulled (Max loves to pull one strand at a time, FUN!) and I'm not the only mom who worries that their child may never fall in love, get married and have children (let the sadness reign). These women are my crew, my squad, my mom gang, even though we've never met.
I thank my lucky stars that Max doesn't exhibit some of the behaviors that children on the more severe end of the spectrum do. But the feelings of hurt, frustration, sadness, loss, they all resonate. They all worm their way into my head and my heart on the daily. Sometimes I succumb to those feelings and cry it out (it helps!), some days I am a grump about it (sorry, Ben). But every day I am grateful for my little guy. I may have no clue what he is thinking, how he is feeling or how to deal with his behaviors, but I'll continue striving to be like these women, trudging up that mountain of uncertainty, not knowing what is on the other side but willing to take it on for the sake of love.
Wednesday, July 27, 2016
Tuesday, July 26, 2016
Letting Go of the Worry
"Let's go <insert fun thing that families do together> with the boys."
This is a phrase that is spoken in our home regularly, and is usually met with a resounding NO in the form of some good excuse not to do it. The boys are tired and cranky, it's late and they still need a bath, we should save money, etc. The list of excuses goes on and on. The "real" reason we make the excuses? The "true" reason we skip out on experiencing things other families do on a regular basis with little to no issues? ASD (Autism Spectrum Disorder).
I can't tell you how many invites we receive from friends to fun events like birthday parties, BBQ's, beach days, etc. I often RSVP, usually with a "maybe," or a "we will try to make it," because I know deep down (hopeful as I am that we will go and have fun and with relentless guilt) that when the day rolls around chances are slim to none that we will actually be brave enough to face the world, kids in tow.
Max will be 5 in November and is going into his 3rd year of the EELP (Early Exceptional Learning Program) classes at our local elementary school. While he has made a lot of progress, he hasn't made nearly as much as I had hoped he would in this amount of time. His eye contact has improved (somewhat) and he is slightly more communicative (we have reached a point where he will say "I want _______"), although if he wants something, his main form of communicating is taking your hand and walking you to the item, or items, and hoping that you figure it out (doesn't sound exhausting at all, right?).
Max is very intelligent. He can count to very high numbers, say all of his colors, point out and name animals, objects and foods. He memorizes entire videos, books and songs and recites them all day and night (this is called "scripting" and is thought to be a way of coping or "stimming" and it is Max's main form of communicating). He understands everything we say to him and around him and he will typically follow instructions if you are very literal (go take a bath, go get in bed, take off your shoes, etc).
Yet still, at almost 5, getting Max to say a whole sentence is next to impossible (sometimes you can walk him through it by having him repeat the words). I can't begin to describe the frustration and sadness that comes from knowing that my son wants to communicate with me but can't. I try to stay positive because I have a lot to be thankful for and a lot of love in my life, but I do have regular bouts of hopelessness, guilt (there must be something more we could do, right?) and depression mixed with anger and frustration. I guess that just makes me human.
I think we always knew Max was different. As a baby he was very easy and required a lot less coddling and affection than most babies do. He always seemed to be in his own little world, stacking and lining things up, sorting things, watching videos for long periods of time without losing interest. It was pretty obvious by age 2 that things were not right. Max didn't (and for the most part still doesn't) respond to his name. He wouldn't make eye contact with us or anyone else. He has never said "momma" or "dadda" as a way to communicate with us (talk about a dagger to the heart).
At his doctor's recommendation we had his hearing tested, we saw a neurologist and they performed an EKG, we went along with the sedated MRI. All tests came back fine, and so we began in-home speech and occupational therapy. At 3 years old we enrolled him into his current school thinking (hoping) he was just a late bloomer. But here we are, going into his 3rd year and praying for a miracle, for the light bulb to come on, for something to "click." For my son, the most precious little guy you will ever meet, to be able to simply communicate with us.
As a mother, I never saw this coming. It never even crossed my mind that I might have a child with special needs. I can recall a pre-mom life conversation with a friend that went something like "I just don't know how parents with special needs do it all." These parents always seemed heroic to me, yet here I am. Not heroic in the slightest, barely holding on to my sanity some days and almost never feeling like I am doing all I can for my son.
It's difficult to watch your children suffer in any way. When we take the boys to the park, Miles gets right in there with the other kids, chattering away and making friends so easily. And then there's Max, always the lone wolf in the crowd, stimming away in the mulch or the sand and ignored by the other kids as soon as they try to talk to him but receive nothing in return. It is a sight I will never get used to, seeing him alone in a crowd of children. It just tears up your insides. One of my greatest fears is that Max won't ever make friends, that he will be picked on because of his strange behaviors and quirks, that he will be ridiculed by other children who don't understand that he is just like them but can't find the words to say so. Is that a rational thought? Probably not. But it's a thought I would guess every autism mom (or any mom, for that matter) has had.
Last night my mom invited us out for ice cream (oh no!) and we accepted, with fear in our hearts as usual. We decided to go to Friendly's (haven't been there in years but it seemed like a place that could tolerate any unpleasantness from our table). As usual, it was complete chaos for 80 percent of the meal. Miles was really good (he is actually a pretty easygoing guy considering he is in the "terrible twos"). But Max, in his usual fashion, was acting out almost the whole time. Reciting the Spongebob playing in macaroni and cheese videos he is currently obsessed with, squirming in his seat, slamming the salt and pepper shakers on the table, making strange noises, squealing, getting frustrated, etc, etc. As usual, I had the sick feeling in my stomach that I always get in public when he acts out, and an array of thoughts littering my mind. Are we ruining everyone else's meal? Is that old lady behind him getting pissed yet? Do they know my son is "different" or do they just think we are being shitty parents? We deserve to go out to eat just like everyone else! If anyone looks at Max weird I am going to lose it! You get the point.
When we got up to leave, I stopped with Max next to the two old ladies behind us. I introduced myself and Max to them and told them that Max is autistic, he is unable to really communicate verbally and that I appreciated them being so gracious about all the noise he was making during their meal and that I hoped it hadn't been ruined. The one that was right behind Max looked at me and said "We thought he might be autistic. It's no problem at all. He is so cute! Thank you for talking to us."
It gave me a little bit of hope and a lot of relief. Maybe they were just being nice because they weren't expecting me to talk to them but I think they were sincere. Maybe I should stop being so scared about what others think of Max's quirks and start accepting more invitations (regardless of how much chasing and calming might be involved). Perhaps I should worry less about the reactions other people will have to Max and worry more about allowing him to experience life without limitations. Maybe this is when he will truly be able to let the little boy that's trapped inside come out to play.
This is a phrase that is spoken in our home regularly, and is usually met with a resounding NO in the form of some good excuse not to do it. The boys are tired and cranky, it's late and they still need a bath, we should save money, etc. The list of excuses goes on and on. The "real" reason we make the excuses? The "true" reason we skip out on experiencing things other families do on a regular basis with little to no issues? ASD (Autism Spectrum Disorder).
I can't tell you how many invites we receive from friends to fun events like birthday parties, BBQ's, beach days, etc. I often RSVP, usually with a "maybe," or a "we will try to make it," because I know deep down (hopeful as I am that we will go and have fun and with relentless guilt) that when the day rolls around chances are slim to none that we will actually be brave enough to face the world, kids in tow.
Max will be 5 in November and is going into his 3rd year of the EELP (Early Exceptional Learning Program) classes at our local elementary school. While he has made a lot of progress, he hasn't made nearly as much as I had hoped he would in this amount of time. His eye contact has improved (somewhat) and he is slightly more communicative (we have reached a point where he will say "I want _______"), although if he wants something, his main form of communicating is taking your hand and walking you to the item, or items, and hoping that you figure it out (doesn't sound exhausting at all, right?).
Max is very intelligent. He can count to very high numbers, say all of his colors, point out and name animals, objects and foods. He memorizes entire videos, books and songs and recites them all day and night (this is called "scripting" and is thought to be a way of coping or "stimming" and it is Max's main form of communicating). He understands everything we say to him and around him and he will typically follow instructions if you are very literal (go take a bath, go get in bed, take off your shoes, etc).
Yet still, at almost 5, getting Max to say a whole sentence is next to impossible (sometimes you can walk him through it by having him repeat the words). I can't begin to describe the frustration and sadness that comes from knowing that my son wants to communicate with me but can't. I try to stay positive because I have a lot to be thankful for and a lot of love in my life, but I do have regular bouts of hopelessness, guilt (there must be something more we could do, right?) and depression mixed with anger and frustration. I guess that just makes me human.
I think we always knew Max was different. As a baby he was very easy and required a lot less coddling and affection than most babies do. He always seemed to be in his own little world, stacking and lining things up, sorting things, watching videos for long periods of time without losing interest. It was pretty obvious by age 2 that things were not right. Max didn't (and for the most part still doesn't) respond to his name. He wouldn't make eye contact with us or anyone else. He has never said "momma" or "dadda" as a way to communicate with us (talk about a dagger to the heart).
At his doctor's recommendation we had his hearing tested, we saw a neurologist and they performed an EKG, we went along with the sedated MRI. All tests came back fine, and so we began in-home speech and occupational therapy. At 3 years old we enrolled him into his current school thinking (hoping) he was just a late bloomer. But here we are, going into his 3rd year and praying for a miracle, for the light bulb to come on, for something to "click." For my son, the most precious little guy you will ever meet, to be able to simply communicate with us.
As a mother, I never saw this coming. It never even crossed my mind that I might have a child with special needs. I can recall a pre-mom life conversation with a friend that went something like "I just don't know how parents with special needs do it all." These parents always seemed heroic to me, yet here I am. Not heroic in the slightest, barely holding on to my sanity some days and almost never feeling like I am doing all I can for my son.
It's difficult to watch your children suffer in any way. When we take the boys to the park, Miles gets right in there with the other kids, chattering away and making friends so easily. And then there's Max, always the lone wolf in the crowd, stimming away in the mulch or the sand and ignored by the other kids as soon as they try to talk to him but receive nothing in return. It is a sight I will never get used to, seeing him alone in a crowd of children. It just tears up your insides. One of my greatest fears is that Max won't ever make friends, that he will be picked on because of his strange behaviors and quirks, that he will be ridiculed by other children who don't understand that he is just like them but can't find the words to say so. Is that a rational thought? Probably not. But it's a thought I would guess every autism mom (or any mom, for that matter) has had.
Last night my mom invited us out for ice cream (oh no!) and we accepted, with fear in our hearts as usual. We decided to go to Friendly's (haven't been there in years but it seemed like a place that could tolerate any unpleasantness from our table). As usual, it was complete chaos for 80 percent of the meal. Miles was really good (he is actually a pretty easygoing guy considering he is in the "terrible twos"). But Max, in his usual fashion, was acting out almost the whole time. Reciting the Spongebob playing in macaroni and cheese videos he is currently obsessed with, squirming in his seat, slamming the salt and pepper shakers on the table, making strange noises, squealing, getting frustrated, etc, etc. As usual, I had the sick feeling in my stomach that I always get in public when he acts out, and an array of thoughts littering my mind. Are we ruining everyone else's meal? Is that old lady behind him getting pissed yet? Do they know my son is "different" or do they just think we are being shitty parents? We deserve to go out to eat just like everyone else! If anyone looks at Max weird I am going to lose it! You get the point.
When we got up to leave, I stopped with Max next to the two old ladies behind us. I introduced myself and Max to them and told them that Max is autistic, he is unable to really communicate verbally and that I appreciated them being so gracious about all the noise he was making during their meal and that I hoped it hadn't been ruined. The one that was right behind Max looked at me and said "We thought he might be autistic. It's no problem at all. He is so cute! Thank you for talking to us."
It gave me a little bit of hope and a lot of relief. Maybe they were just being nice because they weren't expecting me to talk to them but I think they were sincere. Maybe I should stop being so scared about what others think of Max's quirks and start accepting more invitations (regardless of how much chasing and calming might be involved). Perhaps I should worry less about the reactions other people will have to Max and worry more about allowing him to experience life without limitations. Maybe this is when he will truly be able to let the little boy that's trapped inside come out to play.
Subscribe to:
Posts (Atom)