. With Love, From The Mother 'Hood: September 2010

Thursday, September 30, 2010

Thankful


Photo by Becky Coyle, www.rebeccacoyle.com


"Wait , Daddy!" You would think my 2 year-old son recited an epic poem or some other remarkable, historic piece if you saw my response to his two word command. Simple phrases like this, or "Hi, Mom!", elicit extremely happy responses from me: "Nice talking!", or "Good using your words!", and often to the Hubs, "Did you hear him?!". I am ecstatic to hear utterances that most parents of two year-olds take for granted. At this age developmentally, strangers should be able to understand him 50% of the time, and we just aren't there, yet.

The above picture was taken before I knew 100% that we were dealing with autism for the second time, but looking at it now, I know I was right to be concerned about the episodes of "zoning out" I witnessed, among other things. It is a beautiful photo (thank you, Becky!), but as his mom I see the "stare" and the open mouth that I now know is due to low tone (and maybe I am crazy, but I have noticed kiddos on the spectrum tend to have a certain "look" about their hands). I am fully aware that we are extremely fortunate, once again, to receive a diagnosis on the "high functioning" end of the spectrum. I also know if you talk to any parent dealing with autism spectrum disorder, regardless of severity, they will (if they are being honest) tell you that it sucks, BIG TIME. Multiply "BIG TIME" times number of kiddos diagnosed.... It doesn't do anything for me to pretend that everything is "fine" when it isn't - better to let the tears fall when and where they may (and hopefully allow them to wash away some of the stuff that mucks up my life, although I hate crying in front of others).

Since hearing the second "A" word diagnosis, I have seen expectant moms everywhere, their bodies and minds full of the future, and I long to turn back time. It isn't that I want more kids, but rather to return to an innocence that is long gone; to feel for just one more moment the weight of life safe within myself before it is altered by terms like autism and AD/HD. I ache for those first moments, holding my newborn child and falling in love as if we are the only two beings in the world. Don't get me wrong, I love my children (their shtuff and all) more than anything in this world, and honestly can say I would die for them (ask anyone who really knows me - "Mama Bear" is what comes to their mind), but there are times that being their mom is so very hard. My heart breaks for them (and honestly, for myself), about how things were "supposed" to be, and it still catches me off-guard at times. The worst is when out in public, people (usually other moms with their perfectly behaved children) stare at me while I am trying to control a full-blown meltdown, and all I sense is "What-a-crappy-mom" vibe from them. The most recent episode occurred while my own mom was with me, and she knew exactly what to say: "Every mom [of typical kids] should walk in your shoes for a day."

Beyond my family, autism has brought some amazing, beautiful people to my life, and I am truly thankful for these individuals - they "get it". It has taken quite some time (good wine, and a LOT of soul searching, too), but I am realizing that my life path is leading me towards helping others dealing with the same, and I am finally returning to school in hopes of pursuing a career focused on therapeutic support for individuals and families managing autism and developmental/sensory processing differences. I know from firsthand experience that early intervention is truly a key to opening the door toward functioning in a "typical" world. I received two phone calls this week about my older son on the spectrum, (my now sweet boy, who at age two had so many sensory challenges I wondered if he would ever attend a traditional/public school - and daily, if I would survive being his mom) and because of all our hard work together, he no longer needs speech therapy or special education for reading (HAPPY DANCE!!!!). He is attending public school with minimal assistance, and we were able to drop his TSS (Therapy Support Staff) almost a year ago. Now most people are not immediately aware of his challenges. When sharing with his speech therapist how hard it was to even leave the house with him six years ago, she had a hard time believing we were speaking of the same boy. I still worry about him, and about his future, but I am grateful for the knowledge he has given me. My other sweet boy is ahead of the game because his mama has already walked this path with his older brother. These are the moments that it all makes sense - these are the moments I am thankful.









Wednesday, September 8, 2010

Knitting Naked for Autism Awareness


We did receive an official diagnosis of autism for our youngest son (which I was pretty much expecting and is the reason behind my "blog neglect"), but before you all think I have gone off the deep end, Knitting Naked is not some sleep deprived, burned out, crazy hobby I have taken up. In fact it is a very real fundraiser, started by a loving grandmother in order to provide her grandchildren on the spectrum needed therapy (Marsha, you ROCK!). It is a tasteful, tongue in cheek calendar, and from the "Knotty Knitters" here is some info: "Have you heard about the Knotty Knitters from Tacoma, WA? When our story was in the local paper, it was picked up by the Associated Press and it has been non-stop since. 8 local knitters and one knitter-designer from New York posed "almost bare" wearing hand knits for a calendar to fund raise for children on the autism spectrum. visit our website at http://www.knottyknittersforautism.com/ Limited Edition, 2011 calendars are selling for $20.00, plus $5.00 shipping and handling." The calendar is also available for purchase at a discounted rate to families of autistic children for fundraising purposes.

The Hubs and I have been talking about fundraising, but with all we have on our plate, I think it may be awhile before we are able to pursue it. I would love to coordinate a 5k race and dinner to follow in honor of my diagnosed boys with funds going towards research. Someday I will. Right now I am pouring my energy into my kiddos as they return to school. Already I have sent numerous emails, requested a change in guidance counselors for one, a change in teacher assignment for another, attended a meeting to discuss a treatment plan for a third, and orientation for preschool for #4 (phone calls from the teacher are imminent for this one), and school has only been in session for two days. I am also applying to return to school myself while juggling therapies for our newly diagnosed son. My ultimate goal is to work with families and kids dealing with autism.

Today, not for the first time, someone said, "I wouldn't know he had autism", about my older son. I know, I should be ecstatic, right? These comments have increased in the last couple of years as he has reached a level of functioning I thought at one time we may never see (It was truly difficult to navigate everyday life with him just a few years ago; I cried like a baby at his kindergarten Christmas concert when he was able to participate with his class in typical fashion - people definitely stared at me - what a mess I was). While this is what I have strived to achieve over the last 8 years, through all the therapy sessions and the tears, it can be frustrating to hear the doubt in someone's voice when I have lived it. Right now I am feeling a little burned out - I mean, raising a child shouldn't involve enough paperwork to wallpaper my entire house (and so far 4 out of 5 have said paperwork), but that is my reality. It is my life, and I don't know that I would change it if I could - in the end I have five amazing, unique children. Is it difficult, often maddening, trying to get them where they need to be? Absolutely, but if it becomes too much, maybe I will just take up a quiet hobby like knitting naked.