In Search of Friends

Yesterday in my day job I met a 9 year old boy and his mom.  I had a fun conversation with him and learned he loved Math and Science but his favorite was Science. He hated writing, obviously. When he said "obviously" I laughed because my kiddo often tells me the same thing with the same tone of "duh, mom, you're an idiot." I shook my head in amusement as he told me his name, same as my kiddo, and went to tell me what services he has, what he likes, what he doesn't like, how he wants friends. . .Great kid.  Involved mom. He's doing well.  But he wants friends.

My kiddo wants friends.  Lots of my friend's kids need friends too.  I hear it over and over again.  I don't know the solution. I wish I could make it better, I wish I had the solution. I wish I could shake kindness and acceptance from other parents so those parents can teach the same warmth in their kids hearts. Social skills in school are often in a structured environment. And yet our kids, those who struggle with the social nuances, need the help in the unstructured environments the most- at lunch, at recess, in the playgrounds, in after school clubs, in sports, in any of those moments where rules aren't set in stone and vary. Teaching that skill is hard!

Meanwhile I'll just keep growing our local autism parenting club and increase our social events, i.e. Lego club, we're starting up a Family Game night club and a pre-school playdate club because I can control that.  I'll keep doing speaking engagements where I speak to other families who are starting in this journey or where I speak to education majors who need to learn the family's perspective. We'll increase social skills therapy and a friendship table program at school. Meanwhile I'll pray and hope that my son meets a kindred spirit, a true friend. Because we all want friends. True friends who get us and accept us just as we are.  

Ah-Ha moment in Target

I screwed up last week and my kiddo struggled with a new activity. I forgot to preview and honestly thought he'd be okay! It didn't go well and we left after 45 minutes of avoidance and anxiety behaviors.  I pushed him too much.

This week we unwittingly arrived an hour ahead of time with the only expectation that he do his best and that he willingly enter the building and do his best.

We walked around, helped staff set up, previewed expected routine, and then left for the day. Reinforcer was a trip to Target for some silly putty and slime. We went to Target early on a Sunday morning and the store was mostly empty. Those of you in the autism world (parent, caregiver, therapist, teacher, etc) understand that today was progress and a success. The goal is to attend a full class by week 4. Today was week 2.

In Target, we had an amazing  5 minute conversation where he gave me a glimpse of what it's like to live his world. Those conversations and those glimpses are so precious and at times, like today, so heartbreaking as his mom.

Kiddo: Mom, it's really hard for me. Everything is really hard all the time and some times I just don't like being me. I hate autism sometimes. I don't understand all the stupid rules and some times I can't be good!

Me: That's okay to feel. There's nothing wrong with feeling like that. I don't like struggling with eating all the time and sometimes I hate my achalasia too. (I've got an esophageal autoimmune disease and the kids know.) Remember we do our best. If you make a mistake, you're not bad. You make a mistake, you say you're sorry, and do your best next time. I make mistakes too. What happens when I make a mistake with you guys? (He thinks about it but stays calm).  I always say I'm sorry after I calm down. I promise to do better next time. I ask for help when I need it. Remember how I ask you guys to remind me that I need a time out? (we're working on identifying emotions and self regulation needs for everyone). Then we hug it out, right?  He grins and says it's his favorite part.

He gave me a hug and we went on to the video game aisle where I watched him play Mario.
I don't know if I answered his question or problem right. I hate I can't fix it. I'm so proud that he was able to articulate what he was feeling and his frustrations. He hasn't always been able to verbalize emotions and needs. There's been times when I haven't understood and he hasn't been able to communicate. Countless times we have had to leave somewhere with him in a meltdown or shut down mode. I love that he allowed me the opportunity to glimpse into this moment in his world.

I know it's hard for him. I don't want him to hate his autism. But I recognize that anyone with a disability has days where they're just tired of that disability and that they do feel like they hate it.  I have those days when I hate work! I have days when I hate my own disability. I understand. I also don't want it to affect his self esteem. So I promised myself to do my best as I navigate parenting.

Next week I told him we're going to stay for class. His reply? "Ok but can we go to the arts and crafts store next week?" I wonder what conversation we'll have next week between the bargain bins and clearance?

PA Ballet 1st Special Needs Clinic

The PA Ballet held its 1st Special Needs Clinic recently. In April the Walnut Street Theater is hosting a sensory friendly show free for kids with disabilities. In Philly, the special needs community is very hopeful that it is a sign of things to come in Philly.  Making the arts as inclusive as possible, especially to kids, is a wonderful thing! I hope the PA Ballet makes this an annual event, I know they hope to!

C looked anxious and scared throughout but said she had fun.  A had so much fun that I had to carry her to the car afterward. They came home asking to go to the next ballet class! I really appreciate everyone's hard work into making this day possible.  The girls are going to make thank you cards and mail them out to each other their dance teachers.  Staff and dancers from the PA Ballet volunteered their time for the clinic and I think a thank you note is something the girls would enjoy making and should learn to send.

It was hard to tell if they or I were more excited.  Of course I took tons of pictures.  I may have even been teary eyed.  It's nice when something you always hoped they'd be able to do actually happens.  Lesson in all this is that sometimes things happen when they're meant to happen, maybe a bit different than how you'd envisioned. Just keep trying.

Happy 7th Birthday baby boy

Every year I write my baby boy a birthday letter. Someday when he's older and I'm gone, I want him to have these letters so he can remember how much I'll always love him and that I did my best. 

Dear JD:

Today is your 7th birthday!! I love your birthday, because this day is all about YOU! Wonderful you!
I decorated the house and judging by the looks your dad keeps giving me, I may have gone a tad bit overboard for a non party birthday. I hope you love it in the morning. I tried to build you a minecraft super mario world.

We always know exactly where we stand with you, its one of your best features. Your dad might say its one of your most exasperating features. As much as I love the brutal honesty that sometimes comes out of you, daddy is right. Some people in the world are not nice or accepting of everyone. Some people are taught to hate and be mean. Some times we can keep some of that truth inside us, thoughts only in our heads or with just family. I hope you find a way to perfectly balance living in an imperfect world and always being yourself. I know that can be hard but you should be proud of yourself, I know I am very proud of you.

I hope you grow up and continue discovering that next great discovery or doing another great experiment. Maybe its not a Lego master builder or maybe it is.  Maybe its an engineer or architect, a graphic designer, a coder or programmer or maybe a chef. I see such strengths and possibilities in you and they are limitless. If life happens and we have to make adjustments along the way, I know I'll be okay because you'll be at times be my encouragement, my inspiration, and as always my baby boy.  I know you'll be okay because you have such strength and determination and with some awesome little sisters as cheer leaders, we HAVE to believe in you! Although I will say I'd prefer that you learned to compromise a little more and hope your sister grows out of that screeching scream.  Never ever feel you have to make yourself less for someone in this world.  Shine as bright as you can- which means that I want you to be your best but mostly I want you to be happy and kind baby boy. (Yes, I know people can't actually shine unless they put some shiny lotion on them. Yes, I know you don't like lotion. No, I didn't mean you had to put lotion on. I was being silly again. Sorry.)  Mommy loves you JD. Just remember that. I love you no matter what. And so does daddy. And so do your twin sissies.

The kiddo in Wonderland. . .

We took the kids to Dutch Wonderland in Lancaster, PA. It wasn't too crowded. They have an Autism program! Just ask at the ticket booth and they'll give you a special bracelet. You don't have to show proof or anything. It's a "special needs" program so not just autism. No wait in line, go up the exit side and show them the bracelet.  Just like that.

Some suggestions:
Bring your own food and they have a picnic area where you can eat. Use youtube to show your kid videos of the park to "preview" the day and manage anxiety of the "unknown" and "new". Wear your swimwear or clothes that dry fast if you plan to get on the water rides. If you plan ahead you can buy discounted tickets at their website or at some grocery stores. If you buy the kids coupon book, there's a coupon in there. Or pick up a coupon at your local dunkin donuts.


We were waiting in line. I told him to show his bracelet and he asked about it.

Me: "Autism perk! You don't wait in lines when you show that."
Kiddo: "What's autism mean?"
Me: "It means you're special."
Kiddo: "Because I'm different?" I nodded. He replied quietly: "Different isn't bad."
He smiled up at me and then got on the ride.

You had to lay down on your stomach and hold on to the bars and then you're caged in as it spins you around in the air. I was mildly terrified. He had the biggest smile and looked utterly relaxed. It was amazing watching him experience the rides all day long. He loved the spinning, the roller coasters, the big super slide. I love this boy so much. I learn so much from him.

Kiddo: "Were you scared mami?" I nodded and smiled. He grinned, squeezed my hand and said: "It's okay mami. I still love you."

Mean Reds. . .just like the blues only worse

This is ME today. Yes, it is!!

Today is an I Hate day. I try not to have too many of them. Somedays it gets overwhelming and you either vent or cry. I hate to cry.  Let's add that to my pity party.

You know what gets me?

Hearing my little girl fall down the steps because her legs got so weak she simply couldn't keep up and then the bang as her head thudded on the floor, watching the whole side of her face swell and redden from it-- let me tell you that is fear. That is anxiety, stress, and want to cry right along with her flippin fear.  She's fine by the way. Thank God for hard heads and carpeted steps.

Watching her temper tantrum because she can't pronounce a word even though she could pronounce it yesterday, this morning,  or even a minute ago. Watching her struggle to find a replacement word.
Or watching her refuse to speak or to try because she knows its a bad speech day.

Watching her run to the nearest trash can or toilet bowl to regurgitate or choke on food because of the low muscle tone. All her quirky anxiety and sensory needs which make it hard for her to fit in with her classmates. That is flipping Apraxia and Hypotonia.  You wouldn't know her struggles unless you lived with her. Most days she's this silly, quirky, social, happy, and determined little girl. But I know her struggles, I watch them all. It hurts my heart so much to see that struggle. And so somedays when she's mastered a pronunciation or running through the playground, I may cry even as she giggles. Because I have been there during all those struggles.


I worry about my son. Will he be able to live independently, will he find his "place", will he be able to "cope" . . .currently he can't dress himself. I'll find him humming in his bedroom, building legos, buck naked because he's become so distracted that he's forgot to finish dressing. He needs constant prompting and reminders. If the routine changes, as it has this week, he'll struggle behaviorally. He'll hit, throw, yell at the tss, at me, the teacher over some minor thing because the schedule change has him so overwhelmed. Somedays its sensory, other days its anxiety, some days its not wanting to do a non preferred activity. And other days I have no idea why.  Today I picked him up and he was already triggered, upset over something silly. I had to remind him to take deep breaths, to use his words, to calm down. A promise of an afternoon with the ipad while my poor girls trailed after us close enough that I could grab them if I needed too but far enough away for safety should he begin to hit or throw. We walked to school even though it was pouring rain because the change from being a walker to riding the car loop sometimes sends him into meltdown. So we walked, even though curb side pickup would've made more sense today. On Sunday he had a meltdown at Target with my husband. Over playdoh. He was so fixated on getting playdoh that he went into meltdown mode.  I can just picture him kicking, screaming, throwing, as my husband carried him to the car.  Been there dear Hubby, lots and lots. Yes, that is our reality. And my worry is will he ever be prompt free? Will he be okay without his aide?  Who knows. Will it ever be painfree for him to transition from a preferred to non preferred?  Who knows. F you Autism. F you anxiety. This is "high functioning autism" and yes I want to make it better fo rmy kid. Who the hell wouldn't?

I know things could be worse, I know it'll be okay. I don't need comforting or a band aid to sooth it away. Today I just need to vent. Today I'm feeling sorry for my kids. I'll be fine. And so will the kids. And now I must run because dinner is late and I've got an hour before hubby is home to put this house back into shape. . .

Stuck in the Middle

This post has been in my head for a while now.  I just haven't had time to write it. The chorus from U2's Stuck In A Moment plays out in my head every time I think about it.


Two months ago JD and I rushed to a bi-annual psychological evaluation to continue his 1-1 support. It was with a familiar psychologist but a new place inside one of the oldest mental health hospitals in the country, established in 1813.  As we walked through fabulous architecture of the past, I couldn't help but shudder about the likely ghosts still lingering in that place.

The psychologist commented on something and it exactly describes the "problem". He said: "[H]e's stuck in the middle. This gap between (autism) kids needing more support and mainstream kids. He's absolutely in the best (educational) setting, the worry of course is how do you get out of that gap?" 

Have I lost you?

Earlier this month, JD was denied admission for an autistic support therapeutic summer camp. He's too high functioning for an autism only setting and not high functioning enough to be in a typical camp. In a typical camp, the teachers are not equipped or knowledgeable enough to work on social skills, sensory needs, etc. I could raise my ire up and passionately defend my child's right to a summer camp. But honestly it is not that important.

So what do you do when you feel like you don't fit in?  He's frustrated when in an autistic support setting because he's not patient or as accepting with his classmates challenges whether it be stimming, communication issues, or just no interest in a mutual subject matter. In a typical setting, he's often subject to teasing or bullying (that's a separate issue we're managing with the school) or the kids just have no patience with JD.

Its frustrating to be so close to "fitting in" and closing that gap. I also want to teach him to be patient and tolerant. I am grateful for the progress and maturity JD has demonstrated this year. I'm stuck in this journey as his guide and I worry about his future. But I recognize that for now, the gap, isn't a bad place to be in.

Mommy Guilt

I am a mommy who is losing her mind.  My girls started preschool and I am home alone most of the day. The silence of these walls resonates in my heart.  As I fold Princess blankets and pick up hot wheels and Lego bits and pieces, I long for a tiny hug or silly giggle from my babies. I desperately miss them.  

It breaks my heart to leave them crying in school. I harden my heart and walk away not looking back. I feel like a failure when I drop my son off. Most mornings it is an honest to goodness wrestling fight to get my boy dressed and out the door. He hates school. He marches through those school doors with drooping shoulders, self affirming why he hates school so much under his breath.  

Oh but babies if you could see me crying in the car. If you only saw how I took a fortifying deep breath and hold tears in after my son solemnly walks in. It’s silly I know and yet this is a phase we all go through.  But I wonder, is it worth it? Am I selfish for pursuing a career? Will they hate me when they’re older. And the question that I always have as Plan B—“why not homeschool ?” whispers repeatedly in my head.

Mom guilt is a terrible thing and yet I wouldn't change a thing. Becoming a mother, this journey, its the best crazy thing that has ever happened to me. I am blessed to be their mother. They are teaching me to love more, to be more, to grow. That is the awesome thing about children and becoming a mother. They change your life completely. And yes I'm kinda crying now.

Summer plans. . .ESY, Summer camp, grants, and MA oh my!

It may not seem like it but Summer will be here before we know it.  On a day where the high was 1* and a wind chill of -15 to -20 today seems like a perfect day to think about your Summer plans. Have you thought about what your kiddo will do in the Summer? (This is mostly geared towards a child on the spectrum, but can be helpful for any “special needs” children in Philadelphia.

What are your options for Summer for a kiddo on the spectrum or special needs?
ESY, Approved MA Summer Camps, Summer Camps eligible for the Madeline Moore Summer Camp Grant, or Private Pay Camps (Day or Overnight).

This post covers ESY (Extended School Year) for Public Schools-


If you have a child with an IEP who you feel may regress and who would benefit from a review of literacy and math skills, then you should send a written request to your school Liaison or the special education teacher and request that your child have ESY (extended school year). Applications are going in now. This may have been mentioned during last week's report card/progress monitoring conferences if you’re in Philadelphia. ESY runs from 7/7/15 thru 8/13/15 at specific locations. 

Transportation is available and that should also be provided. The ESY location may be different than your child's regular school year school. If your school has not contacted you about ESY or its not listed in the IEP, email the school and ask for the form. It requires a Parent/Guardian signature. child have ESY (extended school year). Applications are going in now. This may have been mentioned during last week's report card/progress monitoring conferences. ESY runs from 7/7/15 thru 8/13/15 at specific locations. Transportation is available and that should also be provided. The ESY location may be different than your child's regular school year school. If your school has not contacted you about ESY or its not listed in the IEP, email the school and ask for the form. It requires a Parent/Guardian signature.

What if you don't want to do ESY?  What if its in the IEP and you change your mind?  Send a written request for an IEP meeting. Remember you have the right to request a meeting at any time.  Send it in writing. I like email because with a return receipt I get notification of who read it and when.
Some parents opt to send their children to Summer camp in lieu of ESY. Others do ESY and summer camp during the weeks that are not covered in ESY. Some, like we will be, opt not to do ESY at all. 
It all depends on the needs of your kiddo and what works for your family’s schedule. If you have wrap around, ask your BSC or TSS what they feel. If you have a good rapor with your school then ask them. But remember you’re the parent and you get to decide.

Listing of Summer Camps from the A-List Elwyn Autism Resource Guide.

Camps


Philadelphia Autism Centers of Excellence (PACE) 1-855-ASD-PACE PACE provides an array of services for children and their families including after school program.


Three locations: SPIN – 215-612-7625. Located at 10541 Drummond Rd., 19154 NET (Northeast Treatment Center) – 855-273-7223. Located at 499 Spring Garden St., 19123 Child Guidance Resource Center - 267-713-4100. Located at 2901 Island Ave, 19153

(I called SPIN today and here’s what I understood, please call to confirm details).
SPIN STAP (Summer Therapeutic) Program. Accepts MA. If your child does not currently have a wrap around agency (CBH) then he/she would need to go through SPIN's intake and eval process. If your child has a wrap around agency then you'd just ask that agency to do an addendum and submit it to CBH.


Interest/Intake form needed to start process. An outside TSS isn't allowed. Ratio is 1-3. Recreational based. Seems to be geared towards higher functioning or no behavioral challenges.
Monday thru Friday 9-3 at SPIN locations depending on your zipcode or as space allows.

Recreation Department: 215-683-3600 Fairmount Park: 215-683-0200 Free Library of Philadelphia: 215-686-5372

Norcom Community Center
10980 Norcom Rd 19154 215- 613-1070 www.nccfun.org Inclusive camp for special needs and typical children ages 5-18. Children's activities: Laura Fekete 215-698-3060.

Variety Club Developmental Overnight Camp 2950 Potshop Road, Worcester, PA 19490 610- 584-4366.

Day Camp: For children and youth with disabilities ages 5-21. Program runs Monday thru Friday throughout the summer. Transportation is available, but limited to a pick-up point in Northeast Philadelphia and Bucks County. Siblings are also welcome to attend. Before and aftercare available. FEE*

Overnight Camp: (610) 584-4366. For children and youth with disabilities ages 7-21. Participants stay overnight from Sunday to the next Saturday.

Vocational Program Jean Merkl 610-584-4366 x1101. For youth with disabilities ages 14 and up. Program takes place throughout the summer. Participants learn job skills as they participate in various work-related activities including landscaping, cooking, office duties, camp store, etc. Space is limited.

I called Variety and here’s what I wrote down. Please call to verify information. Variety Club Summer Camp. Located in Worchester, PA. (By Blue Bell,Skippack etc). They have limited pick up locations in Philly. She said they do have one in NE Philly. They allow outside tss 1-1 to attend. They provide 1-1 at an additional cost. Ratio is 2:1 staff. Can send the kids for all the weeks or just certain weeks. So if you want to send them when they're on break from ESY you can do that too. Or they have "specialized theme weeks" (one week they may cover fine motor, sports weeks, community trips, social, etc.) They have after and before care for extra charge.

Most of the children who attend have developmental and physical delays.
Day camp 9-3 M thru F. Ages 5-21 Play/Recreational based
Overnight Sun pm drop off- Sat mid morning pick up. Ages 7-21 Play/Recreational based

Educational based camps
ESY oriented for ages 5-21 (math, writing, etc)
Vocational for ages 14-21 (geared to teach vocational skills and coping)
Payment: MA, Madelyn Moore grant, need based scholarships, payment plans.
http://www.varietyphila.org/club-camp
Phone: (215) 735-0803 Toll Free: (800) 553-7806
Sam Haslit Etc. 230

Carousel House Special Needs Day Camp www.carouselhousepa.com 215-685-0160/61/62 A 2-week camp for kids with disabilities ages 6-25. Belmont Avenue and North Concourse in Fairmount Park.

Madeline Moore Summer Camp Grant http://dbhids.org/summercamp 215-685-4737 ONLY for children who are receiving CBH services. Provides up to $400/ year for camp available through CBH.

Dragonfly Forest www.dragonflyforest.org 610-298-1820 FREE-Limited space-register early! Residential overnight camp for ages 7-14, in Westown, PA (Chester County). MA accepted.

YMCA http://www.philaymca.org/ Columbia North:1400 N. Broad St. 19121, 215-235-6440 Roxborough:7201 Ridge Ave 19128215-482-3900 Christian St:1724 Christian St. 19146, 215-735-5800 West Philly:5120 Chestnut St. 19139, 215-476-2700 Northeast Family: 11088 Knights Rd., 19154, 215-632-1484

I called a couple of Y’s today. Here’s the info, please call to verify. YMCA Summer Camp Abington and Ambler have "special needs" camps. The NE Knights Rd location does not. I did not call the other Philly locations so I don't personally know if those do. 

TSS is always welcome but the Y can not provide a 1-1 aide. Full membership and program membership prices vary. Financial aid is offered on a need base only and is limited. See Y for more information on how to apply. The Y also accepts CCIS funding. Specific locations may or may not be Madelyn moore grant eligible. 

It is a weekly basis camp, meaning you can send your child to ESY and then send them to Y camp for the weeks they are off ESY. Registration has started. For the special needs camp 1:4 staff ratio. Ages 5-16. Play based. It is not educational or life skills based. All other camps staffing ration varies by age. 1:8 ration for 6-7 and it increases by age etc.

St. Joseph’s University Kinney Center for Autism 5600 City Avenue 19131 610-660-2170 A low cost summer camp for kids with Autism that fills up by January! You can get on their email list so you don’t miss this opportunity. Get information and apply online at www.kinney.sju.edu

West Phila. Parents of Autistic Children Located at 6050 Market St. Contact Roberta Bellamy 267-231-4120 or 215-472-2764 orwestphilapacs@gmail.com

Quest Theraputic Summer Camps www.questcamps.com Ages 5-18. 1-800-313-9733. Fee*

Pegasus Therapeutic Programs- http://www.pegasusridingacademy.com/our-programs/
Summer Camp $240 for 6 weeks. 4 times a week, 30 min classes. 4 students per class. Need based scholarships available on website.



What is the Madeline Moore Summer Camp Grant? And how do you apply for it? It is on a first come, first serve basis. Please note the amount decreased this year. Up to $400 awarded this year.

A Philadelphia child between the ages 6-17 who either has a mental health diagnosis Axis 1 or who has a school based behavior plan. See the link below for more critieria. Usually a child on the spectrum who receives CBH services qualifies.

If you currently have a mental health agency for your child- (CBH, Foundations, Clarity, etc) contact your main contact (a coordinator, your BSC, etc) and tell them you want to apply for this grant. They should be familiar with its name. You can not personally apply for this grant. Your mental health (tss/bsc agency) has to apply for it. Usually through an addendum to your current CBH authorization hours/program. Not all summer camps accept funding from this grant. 

http://www.dbhids.us/summercamp

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
    

What to share. . .

As my son gets older I struggle with how much to share on this medium. It's not about protecting folks from reading about the nitty gritty of Autism. It's about protecting my son's self image and autonomy. One day he's going to be reading a lot of stuff about his disability and I don't want him to ever feel shame or embarrassment as he reads my posts, should he care to do so.

It is normal to want to shield your child from being viewed in a less than perfect light. As his mother, it is a struggle between advocating for his needs, portraying an accurate view of his challenges so others can be helped or help, and protecting him. So for a bit now I haven't written. Mostly because I've had this unfinished post sitting there.

I am incredibly proud of him and how he continues to rise to his daily challenges and changing needs. He amazes me daily. Yes he constantly makes me want to pull his or my hair out while laughing at the absurdity that at times has become of my life. But the reality is that our household is a bit different. For example, he has night terrors pretty regularly. When he's throwing up at midnight, I'm battling with a screeching 50 lbs of terrified kid who's still stuck in a night terror. I must sound like the words meanest mom when I'm screaming at him to "wake the hell up" only to be heard over his screaming that's waking the dead. Or any other moment that seemingly should not sound like someone is being abused or killed but that for whatever reason in our house becomes a production. Seriously, I would not want to be my neighbor. Some days I don't want to be ME! And most days I want life to be easier.

I want others reading new or old to autismland, to know (1) you are not alone, (2) keep going, don't give up (3) ask for help when you need it because this life isn't easy. (4) i'm learning too.

I may not always post the raw truth of some of the challenges that we've overcome or live with. Sometimes its because it's too deeply emotional and personal and I just can't write it down. Other times I just want to be positive or ignore the rough spots. And most times, I just don't want to burn the sausage I'm cooking. Hubby if you're reading this, I may have burnt the sausage a bit because I was umm busy writing. Sorry. Just eat around the charred parts. I have lots of blog posts and things I want to write about, finding the time to write them is the challenge. Those twin threenagers keep me busy.

It's not always Autism.

My kindergartner is doing well in math, science, and music. He's struggling with writing (fine motor/vestibular issue) and reading. Unfortunately my kid is incredibly stubborn and once presented with a challenge or struggle most of the time he deems it worthless and simply refuses to do it. Overcoming that mindset is pull out your hair I need a drink worthy. We need to find some way to make him understand that he has to finish assignments even when its something he doesn't like or that he struggles with.

He's been acting out and struggling with completing his tasks in school. Classic avoidance behaviors. Age appropriate behaviors. I'm being told that this is AUTISM and something to be handled by his IEP or functional behavior plan. The special education teacher sent me an email to let me know what's been going on. I appreciate it. I of course replied with some suggestions. But I also walked away from the email until I thought about it. I wanted to say:
(1) have you discussed anger management techniques with the kid who name calls the classroom teacher?
(2) Have you discussed a behavior plan with the kid who clings to the door frame in an effort to stay with his mom every morning? (separation anxiety, extreme).
(3) Have you discussed positive behavior visuals and time outs with the kids who seem to thrive on being rude or punkish while standing in line every morning? 

Oh that's right, they don't have a diagnosis and so you can't blame it on Autism with them huh? So I guess all those behaviors are perfectly normal. It's just my kid, the only 1 with the diagnosis in his class which is the abnormal one right?

So of course let's consult his behaviorist, let's send me emails which I debate over an hour to reply to, let's implement a sticker chart and appropriate "reward incentive program" for him. But I'm still saying it's not Autism. This is just a stubborn 6 year old behavior.

For the record, I have no beef with how they're handling it. I appreciate being asked and included. I appreciate their willingness to truly make it an individual education plan. I'm just annoyed at the system and process in place. In other words, it's not you dear teacher, its me looking at the big picture. Don't take it personal. It's just an autism mom annoyed that her kid is getting singled out and its all a big production of let's follow the iep review process while the other kids who likewise don't want to do the work don't get singled out and its looked at just normal behavior. It annoys me. Its personal for me dear teacher. You have my heart for 6.5 hours each day and most of it is a challenge for him. And I feel he has to somehow prove he's well behaved all the time to earn his "sticker" while other kids can misbehave and that's okay. And society wonders why kids with ieps grow up with self esteem issues later on in life. . .

Signs you're maybe a Mommy

10. Right now there's a diaper, kids underwear, wipes, a hot wheel, a girls hair tie, a crayon, and a candy in your purse somewhere.

9. You will step on a noisy painful toy at 2 am in the morning no matter how careful you think you are being.

8. You will never leave the house on time ever again.

7. After 2 kids, they all become a generic "you" or "kid". They're all misbehaving somehow right?

6. You can't remember what you were saying. What?

5. You dry yourself off with a "shark" hooded towel after a quick shower.

4. Your voicemail has a closer relationship to those few that still call you regularly than they do you. Most people have forgotten the sound of your voice over a phone.

3. You can NEVER EVER hide. The tiny dictators will find you. You will never have the bathroom to yourself- again. Ever.

2. You bathe, eat, and exercise at weird times throughout the day whenever the opportunity arises.

1. You're serving a life sentence and it's both awesome and awful depending on the week, day, hour, or second.

The 6th Birthday Letter

I've written my son a letter every year on his birthday. This year I'm posting it on my blog. One day he will get to read them. Perhaps when he's older, when he becomes a father, or maybe when I've died. I hope he knows these 3 things remain constant throughout the years that have passed and those to come: I love him, I'm proud of him, and he will always be my baby.

Dear Buddy Boy:

Today you turned 6. The morning did not start off too well. You were 20 minutes late to school. We had 2 time outs before we left the house. Boy were you cranky. We rushed down the block in sweatpants and a polo shirt because your dress pants weren't clean. Mommy's fault. I crossed my fingers and hoped the rest of the day went better for you.

It did! At the end of the day you rushed out of those doors right to me, grinning, giggling, wearing this ridiculous birthday crown and birthday stickers. The utter joy that is you all bundled into that smile and exploded out of the glint in your eyes. Oh the love I feel for you! There aren't words to express or fully explain. It is just love, simply put. Huge and encompassing all that I am and all I ever want to be.

I became a mother 6 years ago today. It was a role that I had always feared and yet desperately wanted. For close to 9 months I was poked and prodded in places better left unnamed. My a$$ was purple throughout most of the time you were summersaulting in my uterus. That week in the hospital I would unwrap you and just look at your toes, your fingers, your eyes. Just you and me, and you were utterly my son.

By the way, I forgive you for calling me stupid and world's worst mami this morning. You're just like your daddy, making me laugh even when I'm mad at you. Te quiero baby.

Love,
Mami

Doing well, no Awesome.

The kiddos school has a big brother/big sister program for reading. They pair up the kindergarteners with a 5th grade class to help teach them reading etc. My kiddo hadn't been paired with someone until today because we wanted to give him a couple of weeks to get used to the routine of changing classrooms and the expected activity. 

 

His BSC and TSS were there. He didn't need them. JD was able to stay on task and was engaged through out the whole activity.  His BSC texted me about it because this is such a big deal. I must admit I got teary eyed. I am so incredibly proud of him everyday but more so on days he overcomes his disability.

 

Too often we focus on the challenges and the barriers that inhibit their inclusion into neuro typical peer activities. We tend to focus on the negatives because they are what we're tackling next. But I want to take time off today to celebrate the positives.

 

What's going well in my 5 year old's world?

• He's so bleeping present and engaged with everything.
• He's using self affirmations to deal with the anxiety and rules.
• He's using words to express his feelings without prompts.
• He's excelling academically.
• He's adjusting so well to a new everything at school- staff, environment, new TSS (1-1 aide), new rules etc.
• He's playing nicely in the playground with classmates.
• He's phenomenal at building legos.
• Plus he remains an excellent hugger.
• And he's a bit (a lot) of a smarta$$.  (he's our kid, of course he is)

I'm so incredibly blessed to have a 5 year old boy who is just the love of my life. He's simply Awesome and a bit of a smart a#$$. If I could bottle up that incredible emotion and sell it, I'd be a billionaire. I write this not to gush about my kid (well maybe an insy bitsy bit) but also to give you hope. This has not happened overnight. But we've also given him time to be a little boy. We have to remember they are people 1st. They are not just their "label".

 

We've screwed up some, maybe lots. But we've never been scared to try something no matter how crazy it sounded- we did dietary interventions, vitamin supplements, detoxed baths (Epsom salt, salt, vinegar, oils). People were like "ya'll are cray cray" and we'd be like "nah, nah, nah, sticks and stones."  But to us, to not question and blindly accept no cure, nothing to be done as fact seems crazy.  So if you think or hear about say sock monkey therapy and it seems to help, we'll probably give it a try too. Because (mostly me), I'm a bit crazy in love with my kids and desperate to try anything to get them to overcome their challenges.  If I give up then I let the negative win and I know he's capable of anything. He just needs time to shine and extra support.

 

So in summary, my kid is doing well. And I'm so freakin proud. I'd probably throw a party if I wasn't so exhausted.

This week in review

This is kiddo's first full week of school. He also had his 1st "tantrum" / "mini meltdown". We were waiting for them- on pins and needles really. We knew they would happen. And that's the tough part of inclusion. Because you know they're going to have a mini meltdown or tantrum and you know there will be kicking/screaming/crying what have you's and you know the typical peers will observe. And maybe they'll go home and tell their parents and well then you want to protect him from the gossipy judgy parents.

Personally I could give a sh*t, I'm not one to give a crap what people think and I have no time for BS. Judgy gossipy people suck especially when you've got a kiddo who can feel their criticism and who just wants to be liked. When kids call him a "weirdo" in the playground or wherever we're at, my medusa snake hair gets unsettled and only the thought that they're kids keeps them safe from my wrath but they definitely get the "you are not a kind person" look and their parents get the "WTF kind of parent are you that you don't correct it? How can you be teaching or allowing intolerance? Get off your butts, put the damn cell phones down and be  f*king parent!" look. I can't stand lazy parenting.

F*ck it, he's going to have a meltdown, yes he has autism, get over it. Your kid isn't perfect either Ms. I have a texting addiction on my new 1 inch bigger phone. Don't you know size doesn't matter?  It's how you use it sister? But he's got killer social skills, he knows the proper back and forth of a conversation, he knows good social behaviors vs bad. And he will one day understand that not everyone is nice and that hopefully won't change who he is or make him as sarcastic and porcupiney as his mommy. My job is to teach him how to be a good person and to teach him coping skills with this crazya$$ world that thinks common core math makes any damn sense and in this world where building a damn fenced wall around borders is helping in anyway.

His teachers provided feedback on how he's doing, while nice to hear, it didn't surprise me. That's just who he is:
A child from the autistic support classroom was pulled in for the learning activities and was having a difficult time transitioning. Anxiety. My kiddo stepped up, said: "it's okay to be upset." and he then modeled the correct behavior and proceeded to show his classmate how to do the activity. See that didn't surprise me. That's my kiddo, that's who he is. Underneath the hyper impulsive child, is a kid who loves to help and laugh. But it surprised his special ed teacher and his 1-1 aide. I wish other parents would take time to see him for who he is. I wish they would see beyond his disability. And my life long challenge and commitment-- is to scream inclusion until they get it, until inclusion is the "norm". Until my kid is the "norm" and the judgy biotches shut their damn mouths.

#endrant

Parenting

The hardest part of parenting is not knowing if you're doing it right. Or how badly you're screwing it up.  If only I could look into the future and see how it would all turn out. The unknown is scary as a parent. My daily prayer is "Please God don't let me F- this up too much."

It hurts to see your kiddo struggle. It hurts to see him unable to control his body and bring it back under control. Nothing has hurt me worse than when my little 5 year old boy described how much he felt his body was "broken" because he couldn't stop himself from making bad choices (misbehave) or his impulsive behaviors.

I don't want to romanticize my emotions but really it floored me and it hurt so much because its partly my fault. Yes, its my fault that at times I suck at being a mom. Times when I can't control my own impulsive behavior and when I should remove myself for a time out-- those times when I'm so frustrated that I end up screaming and throwing my own temper tantrum.

We ended up discussing "No David!" by David Shannon. He loves that book and really it's a great way to discuss how we're really just loving them even when it seems that all we do is yell at them. We cuddled and group hugged and he went on his day. But it has remained on my mind. A day latter and I'm still shook up about how he's feeling about himself. I wonder should I take him to the psychologist to discuss or if I should work on ways to build his self esteem. So many ways to doubt yourself as a parent and the worry can drive you nuts.

This parenting shit ain't for the light hearted or those who only think they want to be parents. And I'd like to think that those of us who second guess or who worry are the ones who are striving to be better parents and better people. But maybe that's just how I fool myself into thinking that I'm doing okay.

Mundane life and normal is relative.

My facebook feed is full of back to school pictures. I'm torn between complaining about this stinking humidity, mourning the end of summer, or worrying about the school year. August is over, our stress free month: free of therapies, free of the endless paper trail left behind 2 main diagnoses. The kids had lots of sleep overs, lots of playgrounds, lunch with the grandmoms, pool time in the backyard, walks, endless free play. August was so much fun. It was almost like having a "normal summer".

And now, we're back to the anticlimactic mundane routine. I'm trying to iron out their Fall schedule. Soccer, swimming, dance, and therapies all must be fit in. Thursday nights I need to be at swim and at dance, I'll have to clone myself and that's all there is to it.  Some other activities that the 5 year asked for are a lego club, baseball, and golf. Golf? Seriously kid? You cheat at mini golf but you wanna try golf?

Oh and the therapies. Sigh. Will there ever come a time when we are therapy free? I am very cognizant of how trivial and mundane these worries may seem. The progress we've had-- Wait for it, Extraordinary. (Please read that as if Neil Patrick Harris said it in his Barney from "How I Met Your Mother" voice. But still to some, my worries are trivial. Troubles after all are trivial. And normal is relative. I am glad of the mundane. Each day that I am their mother, I am blessed and I fall a little more in love with these kids. I am amazed by them. Yes, I am raising them, but I am learning more from them than they learn from me.

But still, getting back to my mundane subject: I want to figure out this Fall schedule. I'm glad for the mundane. Gladly accepting my mundane life of being a mommy of 3 with all the specials and diagnoses. These 3 are my miracles and although our wonderful summer is over, I'm taking a deep breath and leaping into Fall. here we go again. Let's hope this is a good school year!