Christmas Wish

Merry Christmas from our house to yours.

I was just reading an article on inclusion and thought of my friend Simon.  Behind every kid or adult who is included and a part of the community there is a family supporting and advocating. In this case a super mom who advocated passionately for her beloved son.

In high school I met Simon who was amazingly intelligent, funny, smiling eyes, and above all great kindness.  He was also nonverbal, wheelchair bound, and vision impaired. I would usually bump into him by the elevator. He went on to study at Temple University, where we again bumped into each other from time to time as we hustled to our classes.

I would love to say I was a great friend to Simon. I wish in hindsight that I would have been a great friend to him. I wish I was still in contact with him. I think of him often and rather miss bumping into him. I admire his strength and his perseverance greatly. I am sure he had his bad days when he cursed his disability and the many challenges he faced. I am equally sure that he is still embracing life and living it. He is a great guy and his mom and those who helped him along the way did an amazing job of ensuring he lived “inclusively” and I was blessed to spend some time as his “community.”

My Christmas wish for all of you is that you too be a part of an inclusive community whether you be a parent, family, friend, or advocate.  Never stop advocating.

I leave you all with one of my favorite Christmas songs and hope you all have a great holiday with your loved ones.

Brush it off. . .

Today is the holiday show at my son's school. His class has been practicing their 2 songs and its been tough for my son. Maybe its the diagnosis, maybe he's just stubborn, Whatevs. I discussed it with school and they agreed not to force him. He's been joining the autistic support classroom whenever it gets too much for him. Ironically they don't want to exclude him and I'm wishing they would. LOL. Life.

I purposely did not tell the grandparents because I know my son. I debated on whether or not to go.
One of my girls loved the show. The other one drove me nuts and got her thrills that way. Kindergarten kids comes out, nope not my kiddo. Where was my kiddo?  Watching Rudolph in his class. LOL.

I'm not angry. I was a little "woes is me" watching the autistic support classrooms and then the kindergarteners perform. It was bittersweet. It hurt. My eyes teared up. And then I came home and whined to my hubby. Poor guy. Stuck at work listening to my poor us moment. My kiddo would've looked adorable in his Christmas Lego shirt. But ya know he was probably more thrilled with watching tv in school.

Autism changed the path I expected to take. Sometimes it sucks to be hit with the reality that our path is different. It is what it is, and that's okay. C'mon repeat it. Doesn't that approach make it easier?

So what if he didnt want to do the show. Would've been nice, sure. But is it necessary? Will it define him later on? No. There will be plenty of things that JD or the girls will chose not to be a part of. And as they get older maybe they'll one day do the holiday show or actually participate in ballet class. Who knows! But it's going to be their choice and I'm not going to cry because I always dreamed or expected things to be different. I can waste time, tears, and energy over "what could've been" or I can live in the moment and not miss 1 single second of their childhood. Once you let go of "expectations" and of the "shoulds" amazing things happen.

Personally, I'm glad and amazed that he went to school out of uniform. I really think he didn't even notice what I dressed him in this morning.

Finding Hope

I am struggling lately to find hope. Last Tuesday my son had a rotten day. He just lost it in a rage and fear miasma of a meltdown. The emotional explosive child lasted until about Sunday.  Nothing seemingly physical other than a cold.

I am scared of the unknown, of what’s around the corner, of what's next.  I’m scared it’s perhaps a mental health issue or an unnoticed seizure like we had last Christmas? Is it just simply that the honeymoon period is over for kindergarten? I have no certainties with autism. That is perhaps the scariest thing as a mom.

Yes I have consulted with our BSC, TSS, special education teacher, his regular teacher, the school psychologist, our own child psychologist, maybe even the magic 8 ball, the list is exhausting. Yes perhaps we need a new functional behavior assessment now that he’s used to the routine of school etc. Yes perhaps he needs an observation to see if the TSS is effective. Yes, I’m sure we could consider medication. But pardon me for wanting to exhaust all other options before I dope up my kid when he’s 6.  Yes maybe it's a gut issue. Yes, I’ll keep praying and hoping. Yes, Yes, Yes alright already!! When we reach a point where we can either cry or laugh, sometimes we laugh at the insanity, at what is our life, of the platitudes we are told.  

I know everyone means well and in some way it’s appreciated. Offering trite expressions meant to convey sympathy or comfort—you have to take a step back and consider our reality. The reality of daily life as the mother of a child with autism is that there is no certainty and we are so beat down by fighting for all of their legal rights and privileges, struggling to reach our child, and pushing them to progress and succeed despite their many challenges-- we are exhausted and almost stripped of hope and good will. Most days I think I suck so badly as a mother that I find myself crying in the shower. I cringe everyday at school pick up. I hold my breath each time I check my inbox praying I don’t have an email from school. I consider psychiatric medication for myself just to get him to school in a good mood and to get homework completed.

Haven’t you heard if you have a child with special needs be it autism or apraxia or pick your disability, it’s always somehow the mom’s fault. Guess what, I already blame myself. I am helpless to adequately help my child. It doesn’t get much worse than that.  I see my child hurting, hugging or praying isn’t making it any easier or better for him. Instead just ask us what we need, tell us you’ll pray for us, that you believe and have hope. Don’t you know most of us parents are struggling with our own miasma of emotions? Not a day goes by that I don’t cry. I wish I could make my son feel good about himself. I wish I could make his day easier for him. I wish I could take this challenge away from him. I wish I had answers. I wish I was a better mother.

 If anyone knows WTF is causing the protests, refusals, the yelling and screaming and escalated meltdown and tantrums while in class and at home when doing a writing lesson can you please let me know? If anyone knows WTF is going on and how to reach my kid, can ya raise your hand and let me know? But if you just want to tell me it’s my fault, and then don’t bother. Got that covered. If you tell me to continue to pray and that it'll get better, I might cry or laugh. Depends on the day. My response might be like Jack. Don't take it personal. Sometimes when we're tired of crying we laugh, because that's all we have left, so we just smile