“Say something, I’m giving up on you. I’ll be the one if you want me to. Anywhere, I would have followed you. Say something, I’m giving up on you. And I, am feeling so small. It was over my head. I KNOW NOTHING AT ALL.”
Know this song with the heartbreaking lyrics? I know- it can be about so many things and I am sure none of which are autism. But, when I hear that song, it brings me back to watching my son rocking in a corner, unaware of who I was. Or what a ball was called. He was 2 and didn’t know his name. I was terrified he would never know my name or call me mommy.
I would sit there with his therapists and do my best not to cry during the 3 hour sessions where I didn’t see one ounce of progress. He was still rocking in a corner, not knowing who he was or what a ball was. And I was still terrified I would never hear “mommy” or “I love you”. “Say something, I’m giving up on you.” As mothers (especially special ed moms), we know we would never give up. I could be on my death bed and I would still fight to my last breath for this kid. I couldn’t love anyone more than I love him. But it’s frustrating. And that is ok. I wish someone had told me that. The guilt I felt at the time was tremendous.
“I’m feeling so small. It was over my head. I know nothing at all.” Yes, that pretty much sums it up.” Exactly.
I always wanted to be able to fast forward through time. I know moms want to slow things down, let their kids stay little for as long as possible. Not me. I would have paid money to fast forward 10 years to see what he would be like. Because the not knowing what is going to happen can literally almost kill you. It is a crushing weight that you carry around- every single day. No one can tell you for sure what will happen. Moms reading this with little ones rocking in the corner- I can’t tell you they won’t be doing that in 5 years. I can only say (from extensive experience) that with the right help, early intervention, it can get better. Different but better.
Our son is verbal and fully functioning. He can shower himself, feed himself, and is way smarter than me. Behaviorally, he can turn on you in a dime. But at the sweet moments (and there are a lot of them lately), he will press his head against mine, his soft face cheek-to-cheek and tell me he loves me more than anyone in the world. He is still soft spoken, but when he speaks, I listen. He has so much to say and I treasure every time I hear his voice.
Any other moms with kids rocking in the corner? Please know you are not alone. I have been there- and I survived.
Why aren’t we honest about our kids with disabilities? Why don’t we talk about this? It is the elephant in the room no one will bring up. I just don’t get it. I personally think the only way we will ever find answers is if we help each other. And that means being honest. Even if it is scary and even if it means the cool people in your social circles won’t accept you. Newsflash- THEY AREN’T YOUR FRIENDS.
I took my 5 year old to a birthday party today and was shocked at what I learned about some of these moms in a 2 hour span. We spoke about anti-depressants, anxiety meds, marital troubles, weight gain, etc. I brought up my son’s new school and Asperger’s diagnosis and I got silence in return. At first, I felt out of place. Then I got angry.
When my son was about 3, I would take him out and he would sit in the bathroom wherever we were and repeatedly flush the toilet over and over for hours. Yes, it was embarrassing but I also learned who my true friends were. They were the ones that would bring him snacks in the bathroom and say “no big deal” . They would help me find humor when I only had tears. They would sit with me in the bathroom and help me talk to my son. These are real friends.
What is it with these mommy wars? The unspoken competition regarding our children? Why does it even exist? I don’t care whose kid walked first, spoke first or who is on the honor roll or best behaved kid in school. If that is your kid, I am truly and honestly happy for you. But, for the millions of others in my shoes, open up! Be honest. Help the other struggling moms who need to hear that they are not alone.
We are not prepared for motherhood, let alone to be mothers of kids with special needs. There is no handbook, nothing passed down through the generations, no one telling you what to do- or if you have done enough. We optimistically look at strollers and cribs and stroke our bellies, eating ice cream and thinking about the perfect newborn baby that will come out. Not once do we ever have a vision of a child less than perfect. A child that we love so much that it breaks our heart and when we don’t think we can help them, we actually feel physical pain and want to die.
Hopefully, as mothers (warriors), we do what we can for our children and pray that we are on the right track. 10 different doctors will give you 10 different diagnoses. You will try gluten free, casein free, sugar free diets. You will start giving all kinds of vitamin supplements because the only reason your child is rocking in the corner is because he is deficient in vitamin d, right? You will try and try and maybe something will work. Or not. But you will see progress through hard work and early intervention. I promise you.
My son was officially diagnosed at 2 years old. At 3 months, we thought he was deaf because he wasn’t responding to sounds. We had him evaluated over and over again but didn’t have any real answers. He was getting all kinds of therapy as early as 4 months old. By 15 months, our pediatrician told me we needed to get him evaluated for Autism. It was like I was in a bubble. I heard him but I stopped hearing what he was saying.
This diagnosis enabled us to receive extensive services through early intervention and I will tell you these therapists became our family. Angels put on this earth who never gave up on our son. Cried with me, gave me a break when I needed it and celebrated with me when he learned something new. I will forever be indebted to them.
Through the years, we have encountered many angels. The progress he has made is truly unbelievable. I have learned a few things along the way as well.
Perfect children are not typical children. Perfect children are our children with all of their differences, learning disabilities, autism spectrum disorders and psychiatric disorders. They are perfect because they are ours.
I want to thank you all for taking the time to read my blog over these past few weeks. I have been given another opportunity that is going to be all time consuming especially when working full time and raising 3 children. I am going to miss writing this blog but I know Ignite Kids has already found someone amazing to take over.
I wish all of my fellow warrior moms out there laughter in the hard times, support when it is needed and the ability to know you are never alone.
Have you ever had a day that you just want to do over? Get back into bed, pull the covers over your head and when the alarm goes off, just shut it off. Forget school, forget work. Grab the kids, get into bed and watch a movie in pajamas.
That is what I was thinking as I listened to the message from my son’s teacher. “Not a huge deal but we need to talk- TONIGHT”. It was the TONIGHT that got to me. I knew it was urgent and I knew from his history of redecorating classrooms, throwing binders and autographing teachers with Sharpies that it was going to be one of the times I just wanted a do over. And I was right.
Special Ed moms, how difficult are unstructured times during the day? Right????? Gym, Art, Music- they are in sensory overload and then they expect them to come back to class and sit still? That is a huge challenge for my son- especially when the lesson is writing. Apparently he didn’t want to write and when he doesn’t want to do something, he usually won’t budge. Bribing can sometimes work but for the most part, this kid has the determination of the HULK.
When pushed to do something he doesn’t want to do, he turns green, clothes rip off, muscles come out and he turns into someone I don’t recognize. Which is precisely what happened prior to the call from his teacher.
He threw a chair at her, tried to stab her with a pencil (she must be quick- he didn’t get her
either time) and eventually, she had to restrain him. The Hulk had her for 10 minutes. She said it wasn’t a big deal, kid’s tantrum all day long but she had to write a report for his permanent record. Dammit. I wanted a do over.
Will there ever be a day I don’t worry about the Hulk coming out?
My son got into school. A great school! And I couldn't be prouder or more excited...or more nervous. I knew they would fall in love with him (everyone does- he is incredibly sweet) but is the sweetness enough? Does it help these underpaid teachers get through the rough times? The meltdowns associated with Aspergers and other ASD's? How much can I bribe them (gift cards, massages- I have done it all) so they won't freak out when he does?
Fast forward the morning of his 1st day. I wake up at 5:45 so I can shower, get dressed for work, attempt to put some ridiculous make up on to try and cover the bags under my eyes (totally unsuccessful) - should not have had that 3rd glass of wine last night. Dammit. And then I go in to wake up prince charming. Earlier than he has ever been up in his life. At first, he jumps out of bed! He is excited. Yay! Everything is coming together. And then he decides he is tired and does not want to go to school. Ever. He tells me he loved being home these last 9 weeks and does not need school. And proceeds to shut his door and locks it. I frantically search for the little key thing that will open the door and can't find it. At this point, I am actually saying the words I try not to say in front of my 3 small children (but fuck it- no choice) and my wonderful boyfriend hands me a piece of Xanax and gets the door open.
At first I try talking to him about his fears and what his new school will be like and then I realize I am not getting through to him at all. As much as our 3 different behaviorists have worked on feelings with this kid (and he can pick them out in pictures), I don't think he is going to all of a sudden verbalize them to me. So I use the fear tactic instead. Judge all you want- I needed this kid to get on the bus. I told him it was illegal for him not to go to school and that I could actually be arrested if he didn't go. Yep. A little crazy but the kid ran downstairs and put his sneakers on. I guess he does love me after all.
Who knew I would be a crying mess when my beautiful little boy got on the bus? I didn't expect it. But there it was. Tears streaming down my cheeks. Like he was going to Kindergarten for the 1st time. Except he was going on a bus in crappy weather- over an hour away. A million thoughts ran through my head- what if he hates it? What is he gets lost getting to his classroom? Will his teacher get him at the door? My boyfriend was just worried that he had a bowling trip today and didn't want him to lose and throw a ball at someone. But, he didn't and he did great. And I am one proud mom. I am sure these next few weeks will be filled with many challenges, but for right now, tonight anyway, I am happy.
Anyone else have any funny first day stories to share?