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