Monthly Archives: August 2011

Panic Attack

August 30, 2011 in adhd, Asperger's, Autism Spectrum Disorders, Parenting

So the kids are getting ready to go back to school and as I mentioned last week, Squidget has a whole lot of new things to adjust to; a new principal, a new teacher, a new gym teacher, a new counselor and a new classroom aide. Knowing that all of the newisms might make the transition into first grade difficult, I have been busy getting our ducks in a row. I’ve been doing things like making meet and greet arrangements for his new teacher and sending emails to his “team” to nail down some last minute details. I was feeling relatively in control of the situation until yesterday when I sent an email asking about his new classroom aide. He has extra adult supervision built into his IEP (Individualized Education Plan) so imagine my panic when the response to said email stated “unfortunately we will not have an assistant for him this year”. I literally read those words and instantly felt the needle scratch across my vinyl causing a perfectly laid track to distort and skip repeatedly. Shivers shot down my spine, I winced, shook my head and re-read my email. The second time around caused the same response with the addition of silent curses and sensation of my blood beginning to boil.

Thankfully my parents were in town so that I could take a few minutes (sans kids) to calm down and formulate a plan of action. I sent a few more emails, made some calls, and showed up at school today to talk one-on-one with anyone who would listen.

While I was tempted to blow every fuse in my circuit box, I know that strategy has many flaws. Mama bear did show her face, but I hope I managed to do so with integrity and respect. So what did I learn from all of this? For starters, he will get some support, but it will no doubt involve a lengthy process. Despite the “extra adult support” being built into Squidget’s IEP, the process of getting an aide starts the same way every year for everyone. It begins with drop in visits from the ERC’s (Educational Resource Center/Special Ed Support) Instructional Assistants. There are 3 for the whole school (18 classes / 485 kids). If they determine that Squidget (and the other special needs kids) need more assistance they provide emergency funding so that someone can step in to be the aide. The emergency aides do not necessarily meet any special needs criteria, rather they are put in place to help buffer the situation. The result is generally that of setting goals to cope rather than setting goals thrive. At that point if it is determined that Squidget (et al) need a permanent aide in the classroom, they will look to hire someone that is a good fit and with a reasonable amount of appropriate qualifications. I don’t know about you, but this seems so backasswards to me. It is NOT the fault of Squidget’s school, as they have nothing to do with this sort of policy making. My only complaint with his school is that this process was not made clear to me prior to yesterday. But fundamentally, this is a ridiculous process. I know funding is always an issue, but I have to guess that the process of getting a permanent aid in his class will take at least 4-6 weeks. Meanwhile, everyone suffers; his teacher, his classmates, and Squidget, not to mention all the added paperwork and processing. This has no doubt left me frustrated. I am naturally proactive and I am confident in my ability to put out a small camp fire but I am terrified at the prospect of extinguishing an entire forest set ablaze.  But alas my only choice is to play along and hope the situation does not spiral out of control.

OK, I realize that I am projecting a whole lot of terrible what-ifs but I have been down this road before and I don’t like to repeat negative experiences, rather I like to learn from them and make positive changes going forward. Some days I simply wish I were Queen.

One great thing that came out of this process is that I got to meet the new principal, I reconnected with his case manager and counselor, and I met his new teacher. My time with all of them left me feeling that while the situation is not ideal, he is in incredibly good hands. I knew almost instantly that his new teacher is the perfect fit for him and that gives me a great deal of peace. I do know that we will manage to get through this, and I hope to be pleasantly surprised, but for now I am tightening our seat-belts and getting ready for the ride.    

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The start of a new year…..

August 23, 2011 in adhd, Asperger's, Autism Spectrum Disorders, Parenting

We are quickly approaching September and that means a new school year will start in a mere 2 weeks. It is cause for excitement and cause for anxiety. Squidget is excited and I am anxious. Actually I am super excited for him as well, but Squidget will be starting 1st grade with new teachers, a new principal, a new counselor, a new classroom aide, and some new friends. That leaves a lot more “unknowns” than I am generally comfortable with; and when Squidget gets into the classroom that many “new things” will be difficult for him to manage. I worry that his teacher may not understand autism and find his quirky ways to be a discipline issue rather than a wiring issue. I worry that his aide will not push him to be the best version of himself; or worse yet settle for mediocrity (he or she will have BIG shoes to fill).  I worry that I will have to fight fight fight when I just got comfortable working with a unified professional team that has helped Squidget set and reach the goals he should. An entire summer is a long time to be pondering these things, but alas as the 1st day of school draws near I can finally  work on my preemptive due diligence and put in some volunteer time to get us off to the right start and hopefully score some extra points to help me maneuver more freely should the need arise.

Despite my worries, I am adamant about focusing on ALL the good things that happened to Squidget in the last year. I’m trying to review and document everything that was hugely successful while cataloging what did not work at all. I know what can go horribly wrong with all of these new people in play while I recognize all of the great things that can come of it too. Last year Squidget got off to a rough start but his year ended quite brilliantly. I believe wholeheartedly that his end success was due to his hard work combined with the circle of people around him who “got him” and were willing to work WITH his brand of thought rather than against it. I am hopeful and optimistic that the year ahead will bring at least as many positive results and I hold on tightly to the idea that the educators that will surround us will be open minded, proactive, empathetic, and kind-hearted. I don’t suppose that will be too difficult since most of the educators that I know are exactly this brand of professional. We will cherish the next two weeks of summer and prepare for an amazing new year. While I expect there to be some challenges along the way, I am optimistic and my boxing gloves are never too far out of reach should I need them.

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Progress is progress, and progress is good.

August 16, 2011 in adhd, Asperger's, drug therapy, Parenting, Uncategorized

7 months ago a very special group of friends affectionately known as The Mafia, conjured up a plan for all of our families to go camping together. 7 families, 14 adults, and 16 kids under the age of 11. 7 months ago, I declined the option to purchase / reserve my own campsite because we were not sure if we could get the time off and because I was not sure if my kids could handle it, namely Squidget. Several members of our group offered to share their campgrounds if we decided to opt in, so we kept it up in the air until late Spring.

I met this fine group of women in the Spring of 2010 through one of my best friends, and I was admittedly apprehensive about opening up to the bigger group. I really liked them, but I knew that the proximity between all of our kids and the grownups would mean that having them as friends would require full disclosure and the acceptance of not only myself but each of my family members; and at the time I am not sure that I had fully accepted our dynamic and everything we encompass. It took me until the fall of 2010 to let my guard down at all, but with each passing week they managed to to infiltrate my life and I am a better person for it. They are dependable, honest, loyal, trustworthy, and willing to help out at a moments notice. They make me laugh, they give me a soft place to land and they make a mean cup of coffee.

Back to the subject of camping, my biggest concern was that Squidget had not spent very much one-on-one time with the other kids and I felt that was a necessary element to make camping in such a large group successful. Throughout the Spring and Summer of this year there have been multiple opportunities for the kids to get to know each other better, so when the time came to go camping we decided to go for it. While I can’t tell you there were NO incidents, I can say that the issues that Squidget had were quite minimal and he handled the weekend exceptionally well. Squidget’s biggest obstacle is his lack of Theory of mind (the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one’s own). On the day we were leaving he had a misunderstanding with another kid. There was enormous potential for this to send him into a tantrum tailspin. Mr T. and I each had conversations with him about the misunderstanding and while I don’t think he ever understood the other point of view, he did handle it moderately well. As we were packing up I could tell that he was struggling so we tried to give him some space. He asked if he could sit in the car, so we allowed it. For more than an hour he sat in his booster seat snuggled up in a blanket reading and fidgeting. When it was time to go, he got out and said his goodbyes and we headed for home. Not only was his overall success in such a big group a complete victory, I saw noticeable growth in his ability to self regulate and that is monumental.

There is no question in my mind that 6 months ago this undertaking would have been a complete disaster. However, therapy, medication, hard work, and incredible friendships have gifted us with the necessary tools for success. In fact, we totally hit the jackpot. Squidget has acquired a number of friends that may not always “get him” but they accept him and they actively engage with him. Princess Jellybean gets to play with kids she really loves and she gets to interact with other Neurotypical children which is exactly what she needs. The added bonus is that Squidget gets to see how neurotypical children interact and he strives to mimic that. Mr. T got to bond with the big boys AND he got to go fishing. I got to hang out with my immediate family and some of the best friends this girl could wish for.

When I look back over the last year, I recognize how much our family has gone through, but I also recognize how blessed we are by the people in our lives. There have been struggles, but there has also been a LOT of progress, and progress is good.

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You Can’t Always Get What You Want

August 10, 2011 in adhd, Asperger's, Autism Spectrum Disorders, Balance, Parenting, Uncategorized

OK, I feel as though I owe some sort of explanation for last weeks post. I was stressed out, emotional, worried, disappointed, and in general feeling as though I had failed on a personal level.

I think many of us grow into adulthood with some notion of how we might make the childhoods of our children different from our own. People have different reasons for feeling this way: for some it might be offsetting overly liberal ideas or overly conservative ones; for another it could be breaking a negative cycle such as poverty, domestic violence, or addiction; it could be redefining the rules about gender or emotion health; and for a few it may be the desire to correct an epic parenting fail.

I have two sets of amazing parents who have loved me deeply and who have done what was within their power to help me become the best version of myself; but much of my early life was dictated by the kind of crisis and trauma that managed to take my self esteem hostage for the better part of two decades. The culmination of events in my life left me feeling lost and without any idea of what I was capable of. Circumstance was the wild card that stacked the deck against me. When you add poverty to misfortune you’ll find my “one thing” that I wish I could change for my own kids: opportunity.

Because I cannot actually determine how my life would differ if this or that happened (or did not); I cannot say with certainty or merit that I would have found my way more effectively or at a younger age. However, my mind has created the fantasy that if I had been given more exposure to certain things; I might have become a stronger individual and perhaps found a healthier path to follow much earlier in my life. There was no money in the budget for organized sports, dance, scouts, or extra curricular activities on a long term, regular basis; and that has always felt like my missed opportunity. 

So now we fast forward to the lives of my children. One has ASD (Autism Spectrum Disorder), while the other is neurotypical. This dynamic creates a very delicate balance for me to maintain. I have to provide for their unique needs; and financially this means denying many of their wants, and tougher still, denying the things that I want for them. As our medical and therapy expenses are quite steep, we have had to forgo many activities and groups that I was hoping to involve them in (swim lessons, dance class etc). While this has been very tough for me, I’ve been working through it until last week when a tiny little piece of straw broke my back.

We had to pull Princess Jellybean (PJ) out of a preschool that we really love (for the upcoming school year). The salt in my wound is that I know Squidget gets a disproportionate amount of our families resources and that gives me crazy mom guilt. However, I know that if Squidget’s world is healthier and more controlled, the same follows for the rest of the house. What is good for him is good for the family, but that logic didn’t help me last week. And while we did find another wonderful preschool option for PJ, my heart was super achy.

I think most families who have children with special needs struggle trying to make each of their children whole. The only way I know how to do this is by addressing the individual needs while working to ensure that each child feels special and loved in their own way; and if there is anything left over, circling back to indulge a want now and then. I can handle not having the things that I want for myself, because I know I’ve always gotten what I’ve needed. But it is harder to see clearly the difference between what they actually need and what I want for them AKA what I think they need. I know that PJ will adjust well to changing schools, in fact, I am certain that this change is much harder on me than her. I also know that I didn’t fail PJ, just as my parents did not fail me.  We are all OK. It took several family members and a few friends to talk me off the wall last week and I am SO thankful that they managed to ground me.

You can’t always get what you want
But if you try sometimes well you just might find
You get what you need

A special shout out to the Rolling Stones for helping me put my big girl britches on.

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See you on the flip side

August 2, 2011 in Parenting

So here’s the deal, I am having a tough week. I am trying to emerge from a funk clouded with stress,  unknowns, anxiety, and frustration. Yesterday was especially tough as I had to move from the denial segment of my week straight into acceptance. I vowed to sleep it off and start today fresh. I woke up, got the kids to (summer) school, worked out and was off to a great start. Then every time I thought about writing I’d get caught  up in the tornado spinning inside my head. Usually writing helps to clear the fog, but this week all it is managing to do is frustrate the hell out of me. So I’m putting down the keyboard at least for today. It is a beautiful outside; my kids are in good moods; my brother is in town AND he brought me Garrett’s popcorn so I am signing out.  I’m gonna let the storm settle (kiddie) pool side. See you on the flip side.

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