. With Love, From The Mother 'Hood: 2011

Thursday, February 17, 2011

Autism Services On Chopping Block

Every time I hear of a government official pushing for cuts that negatively affect the autism community I am baffled, outraged, and left thinking "Obviously this person has never lived with autism." Today, I learned that Pennsylvania Governor, Tom Corbett is proposing cuts to "Wraparound" services ("Wraparound", also known as "Home and Community Services", are therapeutic services that address and treat behavioral issues associated with autism, and can include the entire family within treatment/therapy.) I am not blogging about this just because it is an autism issue, or just because I feel strongly about advocating, but because this hits me on a very personal level. Over the last six years, in addition to other therapies, we had wraparound for our son and today I received word that he no longer needs this assistance. This is HUGE. Unfortunately, so are the proposed cuts.

To give you some perspective: Six years ago, at age two it was difficult to leave home with Max and I had doubts about public school. We fought hard and Max entered kindergarten on schedule, mainstreamed with a full-time therapist attending school with him. Forward to now and in third grade he is meeting expectancies for the beginning of grade level. He no longer requires the therapist in class and has learned through wraparound to self manage his sensory processing differences. One of the few outward signs that he is “different” are his stims (stim: autistic people often fixate on a comforting or compelling thing or action (such as rocking or humming); to perseverate.) and he does these quietly without interrupting the class. The assistance that we received from our wraparound providers is a large part of why Max is doing so well and our family is proof positive that early intervention makes a difference. I cringe to think where we would be today without having it, and I imagine my son would still need care of some kind, possibly for life, had we not addressed his developmental needs and behavioral issues early on. Research has shown that “Providing intensive intervention during these early years leads to a higher degree of independence and overall maximized outcomes” * which in the long run means less outlay financially for treatment and a better quality of life. I will be writing letters to oppose these cuts, and below is information if you care to take a moment and do the same. I appreciate any support that you are able to give as I continue to fight for all children and families affected by autism.

With thanks,

Missy



From Autismlink:

AutismLink has been sounding the alarm for quite a while now about Governor Corbett's potential cuts. WRAPAROUND SERVICES ARE ON THE CHOPPING BLOCK. This is not a rumor -- this is real. YOU WILL LOSE YOUR SERVICES unless we stand up -- NOW. He has already taken the first step to restrict wraparound services to children under 3 who are receiving Early Intervention. I am confident in telling you that he *will* close the loophole. This is not a drill.

Please go to http://www.tomcorbettforgovernor.com/contact/ and tell Gov. Corbett -- NO CUTS FOR AUTISM!!!!!!! Flood the phone lines (717) 787-2500 with your thoughts! Or fax to your heart's content: (717) 772-8284

Governor Corbett's Budget Secretary, Charles Zogby, 238 Capitol Building, Harrisburg, PA 17120

also:
Acting Secretary of the Department of Public Welfare, Gary Alexander, 502 Health and Welfare Building, P.O. Box 2675, Harrisburg, PA 17120.

Monday, January 10, 2011

The Déjà Vu

This is a long post even for me, but it has been a long, dark winter. I did hear the whisper of spring today after hearing that Max is nearly on grade level, when not so long ago I didn't think public school would be an option (maybe it was more of a shout) ~


When Max was little we couldn't go ANYWHERE without a “meltdown”, and they usually started when I tried to put him in the car and would continue when I didn't turn the "right" way, or while walking in the doorway of most stores, and if someone touched something he deemed his (which was anything and everything he touched), well, look out...... I could probably use an entire blog entry just writing a list of his "triggers"; his little body unable to process all of the sensory info we are all bombarded with daily. I remember watching him, time after time on the floor, his whole body stiffened against the assault on his senses, wishing there was some way for me, as his mom, to fix this. I am amazed looking back, that I attempted to ever go out at all (I suffered through depression and massive panic attacks, but the noise in my head has nothin’ on the noise in this house). Screaming could last for hours, and still does . Once, when Max was 6 months old, the relentless screaming (as well as eye rolling and his head snapping backwards) resulted in a frantic call to our oblivious pediatrician (whom we no longer see), along with a trip to the ER ending with everyone thinking I was just some crazy mom who couldn’t handle three kids. I thought he was having a seizure, and now I know it was "just" sensory overload, which I believe, also played a part in the night terrors he experienced – Max didn’t sleep through the night until nearly age 4. Thankfully, Sam isn't as sensory defensive, but he does scream and we still have few nights of uninterrupted sleep (or if we do, we don't sleep past 5:30 am), and it takes me back to the early days with Max. Lately, I have had a hefty dose of this screaming, (a second helping I could do without in this lifetime, thanks very much); ear piercing on a level that makes most people cringe while giving me the "your-such-a-crappy-mom-why-don't-you-deal-with-your-kid" look (on a recent trip to Target, a grouchy employee made the mistake of giving said look AND making comments loud enough for me to hear. Better believe Mama Bear spoke up, but, I digress).

My oldest daughter needed to see her doctor and having five children means that I rarely can accomplish a visit like this without at least one other child in tow, and this day it was with two extra along. Mars has definitely become more manageable on these trips, which is not to say that she is "easy" at this point, far from it, but we are moving in the right direction. Sam, on the other hand, is hitting the full blown, mecca-lecca-high-mecca-hiney-ho (credit to Jambi from Pee Wee Herman, once again, so that I don't get sued for violating some copyright as the cherry on top of all the latest shtuff) high note of the "terrible twos", and with kiddos on the spectrum things are magnified, LOTS – say by about 1000. Terrible doesn't come close to describing the situation that quickly spiraled downward from bad to worst; a repeat performance of two other recent doctor’s office visits when schedules meant Sam had to come with. Since this had happened twice before, I was somewhat prepared, but only in the sense that I was expecting it, not that I had anything in my bag of tricks to diffuse it (who am I kidding? Even with all of my knowledge and experience, my “bag of tricks” often consists of what I can scrounge from the bottom of my purse – lint or a used lollipop stick, anyone? - because I am the mom who waits until the last minute to get ready, and runs out the door without half (most) of the stuff I need). I knew within five minutes of our time there, when he threw himself face down in the middle of the hallway, it was going to get ugly. I wouldn't have moved him had he chosen a better spot to sprawl, because moving him during these "episodes" always prompts the intense screaming, but he clearly would have been stepped on if I left him there (OR he would have tripped some elderly patient, who would inevitably fall and break something, bodily or otherwise, and it would be ALL MY FAULT, resulting in a law suit – and yes, this is the crap that flies through my mind). Once I moved him, Sam's switch was flipped and all I could think was "please let them call us next, please, please, please, puh-leeassssse" and thankfully, they did (this NEVER, EVER happens, so yeah for something positive!), but just before this, a nurse came out and she had to say: "I thought from all the noise someone was hurt - Temper tantrum?” To which I mumbled a reply of "sort of" because in these moments I simply don't have any energy left to explain, when what I really want to say is that, "yes, someone is hurt; actually all of us are ('us' being my family) hurt by autism and its effects." (This is one of the challenges about having kids that are “high functioning” on the autism spectrum – there are often no outward signs or indicators that they aren’t neuro-typical and people may assume that what they are seeing is just bad behavior.) We move back to the exam room, and here is where we hit the dreaded level I knew was unavoidable unless we ran out of the building immediately: Sam screaming so loudly the doctor had a hard time hearing me, a pained expression on her face every time little man hit a pitch that is like a nail to the brain, driving home the fact that, THIS IS NOT NORMAL (whatever normal is). I apologized, profusely, and for what felt like the millionth time in the last few weeks, fought back tears, embarrassment and a tremendous sense of loss, feeling as if an invisible hand had somehow picked me up and returned me to START. Do not pass GO, Do not collect $200. Thanks for playing.

My oldest saw the tears fall as we walked back to the car. I looked at her, my beautiful, gracious, empathetic girl, who sometimes seems much older than her 16 years. She told me something along the lines of, “Don’t let them make you feel bad. You are an awesome mom – they just don’t know what it is like.” She is a beautiful young woman who will make a difference in this world after having these boys as her brothers. She is, and continues to be one of the proudest creations of my life.

Jump to Sunday evening. It is our wedding anniversary; the day, 12 years ago, we promised “in good times and bad” (having no realization of the road we were headed down, but who does in that giddy moment, right?). The hubs and I are at World Cafe Live in Philly enjoying a much needed adult only dinner, and music by one of our favorite artists, Grayson Capps. Grayson is a musician and singer; a storyteller with a voice that is both raw and pure, telling rich tales of real people living hard lives. He is what art should be about – he moves me (evidenced by my attempt to capture his spirit above in a painting), his voice and words a soothing salve on the open wounds of my heart . We definitely need more time like this, but life doesn’t always allow. Instead, hubs and I do what we have learned over nearly 20 years of knowing and loving each other: we keep on keepin’ on with a strength that is hard won. We fight through the trials our life has brought, hand in hand, to arrive in these “sweet spots”, the result of a lot of give and take from both of us. If you are still with me as a reader, thank you, and if you are not, I get it – I am amazed I am still hangin’ in myself. I have returned to school and work part-time which I know is crazy in the eyes of some, but it is a way for me to reclaim some sanity, a sense of self, along with trying to make some plain old sense out of all that is my life. Listening to Grayson’s words reminded me how important it is to pursue my art and writing – that this is my story to tell, and by embracing and telling it I can let go of some of the hurt, while allowing tears to fall when and where they may, instead of becoming mired while taking in the déjà vu.