Thoughtful Thursday: The Annual ARD

Next week brings Anna's annual ARD meeting. For the uninitiated, this is a meeting that takes place once a year whereupon a vast team of people get together and decide what goals your special needs/special education child should work on for the following year. It can be a daunting, humbling, scary, and overwhelming meeting, especially in the early years. Our ARD meetings usually have 10-14 people in attendance! We started this process when Anna turned three and was placed in the PPCD program (argh, lots of acronyms right? PPCD = preschool program for children with disabilities, ARD = annual review and dismissal). This will be our 7th meeting... the 4th at our current school with her current team. Luckily for me (and through a lot of hard work and research), I have a great team surrounding Anna and there is no friction in the group. I got the first pass of new goals yesterday to review and had a discussion with her Life Skills teacher this morning about them.

I want to take a moment to interject how happy I am that we moved Anna from Inclusion to Life Skills earlier this year. I was scared about this move (remember THIS post?) and was skeptical that it would be good for her. Well, long story short, it has been a good move. She is much happier, her behavior has vastly improved, and she is able to learn and work on her goals.

All in all, the new goals look fine. There are some that are too simple (like in Social Studies, recite the city and state in which she resides) so I pushed back on those and they will be updated, but most of them are fine. Her speech therapist feels like Anna has met most of her speech goals and is now going to focus on social skills. I think her articulation still needs work so I'll inquire about that during the meeting. Her ST is very progressive and is constantly on the look out for new techniques and therapies, so we feel pretty blessed to have her on our side.

It sounds cliché, but it really does take a village to raise a child, especially one with special needs. It's important to have a group of professionals working in the best interests of your child, so as parents it's equally important to advocate for what those interests are. Since Anna is now in third grade and about to turn ten, I've started including her in these discussions. At our last meeting when we changed her placement, I had her join us during the last few minutes. We told her about the plan and got her input and buy-in. We cannot forget that SHE is the center of these meetings, yknow?

I'm glad we're at a place where the annual ARD doesn't beget dread but instead is a relatively easy discourse on how best to help my daughter at school. That's the way it should be.

Happy New Year! and Reflections

Every year on New Year's Day, I get into a cleaning frenzy. It's like I *must* start the new year with a clean slate. I also do this mentally too... taking stock of the previous year and setting some goals for the upcoming year. I really don't do resolutions anymore; there are enough pressures I put on myself where I fail that I don't want to add even more. ;)

I did a big recap on the year yesterday when finishing up my 365 Project, so I won't rehash in detail what the year brought us. I also went through the entire year and picked out my favorite ten photos. I captured so many memories! If you want to take a peek at our Christmas season, I created a Flickr set: Christmas 2010.

I feel very blessed to continue to discover new passions. I'm 41 years old and for the last nine years have defined myself as a mom to a child with special needs. In 2010, I found an artist residing in myself... a girl I didn't know existed. Being a science and math geek my whole life, this has been a startling and rewarding discovery. Creating custom cards for clients, scrapping memories with digital scrapbooking, creating for the best designers in the business, and now exploring photography has brought a sense of peace and balance into my life. When so many of my years have been consumed with doctors, appointments, therapists, specialists, tests, ARD meetings, and worrying about my daughter's future, it's easy to lose sight of my individual self. I'm excited to see what 2011 will bring and I hope to share this journey with my friends and family. Thank you for being such a huge support as I went through the ups and downs of this stressful life and for being a spot of sunshine in my life.

Happy New Year!!!

Thoughtful Thursday: Celebrating Stasis

It has been a long time since I've written a Thoughtful Thursday post and quite a while since I've blogged about Anna. The thing is... she's doing well right now. I say that with a whisper in my voice and hesitation in my heart because with her, things change rapidly and dramatically. It's easy to blog when things are rough but finding that appreciation for stasis and celebrating it should be just as important.

The school year started off really badly. Six weeks of misery for her and the staff at school. Countless specialist appointments, endless meetings, daily reports. Changing her placement from inclusion to life skills has made an immense difference. She is participating in class, she has befriended Caroline (Anna reads her stories and gets to push her wheelchair to the bus at the end of the day), she has not been back to Room 300 (the in-school suspension room), and she is happy to be at school. Her body has finally recovered from its premature thrust into puberty last year; changing from Risperdal to Abilify is what turned that around. She hasn't had a seizure in 17 months, a new record. She is on a good cocktail of meds now too. For the first time in ages, she is stable. Stable. Most parents have no idea what a blessing this is. It's easy to take for granted having a happy kid, one who is generally healthy and well-behaved. It's agony to watch your child endure psychiatric issues, health concerns, academic problems, and social missteps. Feeling helpless is the worst feeling... as a mom, your instinct is to do anything and everything to have your child be happy.

stasis |ˈstāsis|
noun formal or technical
a period or state of inactivity or equilibrium.

We're into at least a month of Anna achieving a sort of statis... emotionally, psychologically, medically. Dare I say, there have been moments of feeling normal, even typical, in our family of late. Stability is the core of helping Anna navigate the world. When things are predictable and when she feels safe, she starts to blossom. So even though it seems like Groundhog Day here most of the time, it works. And for that, I'm eternally grateful. So, I want to challenge each of you to think about your life right now. If you are in a zone of stasis, become aware of it. Put some of the memories of this time in a bubble... write about it, take photos, record it in some way. Because the thing about stasis is that is doesn't last. Things change in a heartbeat, regardless if you have a child with special needs or not.

My nephew's father passed away last weekend. He was 39 and suffered a stroke. Curtis went to Ohio this week to be with his sister and our nephew and it's been a profound experience. Our nephew is only 12. Can you imagine having to tell your child that their father has died? Curtis has been helping the family... they've been at his house (SIL is divorced from him) gathering mementos for our nephew and cleaning things out. I got this text from Curtis yesterday morning:

"We are cleaning out his house right now and it is so striking. A life unfinished. Everywhere I look is something half done. It makes me a little ashamed for my procrastination and what people would say of me if I were suddenly gone. Umph, so heavy."

So if you have stasis in your life at the moment, celebrate it. Celebrate the routine, the mundane, the boring. Make today a thoughtful day in your life.

Thoughtful Thursday: Where are my rosy glasses?

I was typing up a getting-to-know-you questionnaire for CrumbSnatchers since we have some new designers and one of the questions was "Are you a half-full or half-empty kind of person?" You know, I used to be a half-full person. I took pride in being happy and optimistic and tackling adversity head on. I did wear rosy glasses and I liked them! In fact, I rocked them! Do you know how I answered that question today?

"It used to be half full but then life drank it and now it's half empty."

How sad is that!?!

What happened to me? There are days when I just plumb don't like myself. Like today, sigh.

I couldn't sleep last night. I tried. My mind was awake and going into those twisty, dark places. Tick Tick Tick Tick. Toss, turn, my mind would just.not.stop.

When I woke up this morning, I felt like I'd been hit by a truck. A 8+ pain day on the Holly Fibro Scale. Which subsequently led me to be a grumpy, ugly person all day. Honestly, I hate to wallow in self-pity, I HATE it but some days, I just want to scream. Enough! These kids are so hard, my marriage is so hard, my pain and my own health issues are so hard. I'm tired, I just want to lay my head down and sob for a while.

But I can't. And I won't. And it wouldn't be in character either. I don't cry. I really don't. I'm strong.

I know once I get some sleep I'll be much better. It's amazing how much this makes such a difference. Anna needs me to be a half-full kind of mommy. Well, really, my whole family does. So I drag myself through this one bad day knowing tomorrow will be better.

It will, right?

Way Back Wednesday, the search for a diagnosis

We spent the morning in the cardiologist's office for an echocardiogram and EKG on Anna. The geneticist wanted to make sure the connective tissue disease we have in our family isn't affecting her heart like mine (I have a mitral valve prolapse). The echo and EKG were normal so that is one more thing checked off the list. It made me remember when Anna was 3.5 and had started having seizures. I was wondering at that time if we should continue searching for a diagnosis... when we get a new symptom, I always struggle with this decision. How much trauma do we put Anna through and how invasive do we get in order to find out what she has? Here's a post from 11/29/04 on iVillage's Child Hypotonia board:

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DH and I are considering opening up the diagnosis search again. Anna had another seizure on Friday (this makes 6 tonic-clonics total, 5 since the end of September). With this new label of epilepsy, it adds a new piece to the Anna puzzle. Could a geneticist now look for something that hasn't been looked at before?

Finding an answer wouldn't change how we are managing Anna's care, except for the seizure control piece. (I'm going to start a separate thread about that.) It would help us know what to expect (what we all are wishing, right?) and maybe help us find more balance in our lives than we currently have.

It means that we would need to seek out someone with more experience or expertise than the folks we've been dealing with, because they've all said, "I don't know." It means maybe putting Anna through more invasive tests. It most likely means that we still won't have a diagnosis at the end of it all.

Her symptoms include: epilepsy, hypotonia, microcephaly, global developmental delays, sensory integration dysfunction, high myopia (-7.5 rx), failure to thrive (resolved at age 3), feeding and sleep issues.

She has tested negative for: metabolic disease, mitochondrial disease, Rett Syndrome through MECP3 gene, Angelman Syndromethrough methylation and UBE3A sequencing, chromosome analysis, glycosylation defect, and 7-dehydrocholesterol. She has had two normal MRIs and EEGs.

I wanted to get your opinions, advice, cautions, and two cents. It seems like with the seizures happening more frequently, SOMETHING is going on, we just don't what. Is the epilepsy a symptom of a syndrome or just plain ole epilepsy? Obviously, we need to control her seizures... more about this in my next post. I need a reality check. Thanks.

Holly and Anna, 3.5, no dx.



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I have a whole slew of new tests that she's tested negative for but I would still like to know. Thanks for reading.

Where do you start?

Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.

Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.

Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.

As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.

I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.

I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is holly0817@hotmail.com. Good luck to all of my sisters in motherhood parenting children with special needs.