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.

An unexpected call and a very long post

I got a call yesterday on my cell phone... a little after 2 in the afternoon. It was Anna's special ed teacher, Mrs. M, who has been working with Anna for the last three years. When I heard her voice, I steeled myself anticipating bad news... I expected to hear that Anna was having a meltdown or something and they had to report it due to the severity. Imagine my surprise when she said that Anna was actually having a good day.

I had gotten a notice in Anna's backpack the day before for a scheduled ARD for October 12th. I looked it over to see why we were having a meeting and it said something about her schedule of services so I signed it and returned it saying that I could attend. I figured they needed to tweak the minutes which happens sometimes and even though it's just a formality for a signature, they have to call the team together for an ARD to make it official.

"Well, you know Anna has been struggling this year."

Yes, I say.

"Even though her behavior is a little better this week, she is still so disengaged in inclusion. She just won't participate. We're concerned about if it's the best place for her. Have these thoughts occurred to you?"

Oh yes, I respond. Curtis and I have talked about it. Ideally, Anna would do best in a small classroom setting with a handful of typical students. But no such class exists.

"We've been thinking about why things are so different this year. There is a big difference between second grade and third grade... in third grade, the academics really take off."

I concur and told her how the psychiatrist was wondering if some of Anna's behavior issues were because she was becoming aware of those differences. We really don't know her level of self-awareness and are hoping the behavioral therapist will help us figure that out.

"Because she is so disengaged and because the material is getting harder in inclusion, we are wondering if we should look at her placement. The academic gap between Anna and her peers has just gotten too large. That is why we called the ARD for the 12th. We want to discuss placement in the FAC classroom."

I immediately feel tears prick my eyes. FAC? (What used to be termed FLS for Functional Life Skills, has now been changed to Functional Academic Class, FAC.) I murmur something and Mrs. M continues.

"Anna would be with Mrs. M_ in the FAC room for grades 3-5. I would still pull her out for Reading since that is one of her strengths and she would continue to join her inclusion class for lunch, recess, and specials. But we feel that Anna's needs are not being met in the inclusion setting and that she would get more support in FAC."

Having had a minute to absorb what she was saying, I felt a great amount of sadness that inclusion was dwindling as a viable option for my sweet girl. I expressed my greatest concern about this placement. Anna's biggest fear at school are some of the other children with special needs. (She has an inappropriate reaction to children in wheelchairs and who are nonverbal... anything from asking multiple questions about their abilities and wanting to baby them to covering her ears, having a meltdown, and shutting down.) She was in FAC part-time in kindergarten, and her fear of Caroline, in a wheelchair and nonverbal, was a daily presence in Anna's life all the way through first grade. Seeing Caroline again in second grade led to the great wheelchair obsession in the fall of 2009... which led to three weeks of interrupted sleep, constant perseveration, pestering her teachers, parents, friends, neighbors, and doctors to give her a wheelchair, finally culminating in an attempt to leave campus while at school and actually finding Daddy's car keys, leaving the house, and starting his car (!) in an attempt to drive to the doctor's office to get a wheelchair.

We are not talking about ordinary anxiety here.

Mrs. M agreed that this is a big issue. She has a student currently in FAC that she picks up after getting Anna in the morning. For the first few weeks, Anna would not even approach the FAC classroom door but now she is coming just inside the room to wait. I suppose we could propose a graduated program of 45 minutes in the room daily for a few days, then an hour and a half, and so on. But then my heart wrenches more. Are we giving up on her? Just writing that makes the tears flow. She was doing pretty well last year in inclusion. She had the material modified for her, she was making slow progress on her IEP goals... well, except in math.

All I can picture now is my little girl, a full year older than her peers since she repeated kindergarten, towering over her friends because of her dangerously rapid growth last year and subsequent hormonal imbalances due to the Risperdal, sitting at her desk completely disengaged from the class as they work on projects. She can't do what they can academically. I've read the reports day after day of her acting out in class, pulling hair, turning the lights off and on, hitting her teacher, announcing that she'd peed her pants so she could go to the nurse, crying. She is not feeling good about school at all. She is desperately crying out for help. I'm heartsick that we only have these two options at our campus because neither is good for her. District-wide I think there is only one additional option and that is an autism cluster class; I think that would provoke even more anxiety for her if there were any kids stimming or making guttural noises.

It can't hurt to ask, so I'll see if there are any other options in the school setting. Maybe she can stay with Mrs. M for part of the day. Maybe she could only go to school part-time. Maybe we should look at other schools, at private schools, at charter schools. Maybe I should homeschool her. Academically homeschooling would be most beneficial. But how much can we expect that she would learn and retain and how much would that help her in the real world? Socially speaking she has potential to continue to grow... with repetition and scripts, she is beginning to expand her conversational skills with the neighborhood girls though she is still painfully delayed from where they are and what they discuss. Ughhhhh. More tears. (There was an interaction with the three girls up the street last week that was really poignant... but that story is for another time.)

When I told Curtis about this conversation with Mrs. M (who recommended we visit the FAC room and meet Mrs. M_ before the ARD), I suddenly flashed on Anna as an adult. Never before I have felt such a clear picture. She will need us. Even her academic and medical team have not been able to tell me what to expect in her future... maybe I've been living in denial or maybe you can call it hope, I don't know, but some part of me felt that she would be independent. Sure, she'd need help, but she would do it her own way.

Maybe she still will.

But somehow, starting with the Rispderal failing last fall, I've felt like we are losing her. The aggression over the summer gave me a pit of dread about this school year. As Curtis and I continue to discuss the ramifications of her academic placement, the bigger philosophical questions come up. What is best for Anna? Is this move somehow an admission that we are giving up on her, just a little bit? Are we overthinking? Perhaps she will thrive and flourish in this other environment, especially if we can manage her anxiety. I don't want to limit what she can do and accomplish. How do we best serve her needs now to ensure the brightest possible outcome for her as an adult? Is it more important that Anna know how to multiply numbers or that she knows how to respect personal space and have appropriate interactions? Academic and social skills are tough to balance and even harder to teach; we know she is capable of learning both given the right environment and circumstances. How do we find that?

Another thing that is crossing my mind is our future, all of us... my own health, and Curtis's too, and the role that Jenny and Dominic will play in Anna's life when we are gone. I feel so protective of her and so deeply connected to her too that it's been hard to make her understand why it's important for her to be separate from me. I want to always be by her side, I want to be the hand she reaches for when she's scared and overwhelmed. I don't want her out in the real world potentially getting taken advantage of. But I have to let go some. I've always felt that we should live an action-oriented life with the goal of an independent adult existence for her but also prepare for the possibility that she will need assistance. We really haven't been doing the latter so much. Reality checks are gut-wrenching.

And if you've made it this far, God bless you. Writing is my way of wrestling with the big issues and I so appreciate the support I've gotten by sharing myself here. I guess our next step is meeting with the FAC teacher and visiting her classroom, then we'll talk about options prior to the ARD. I am glad, in a manner of speaking, for the unexpected call yesterday... this would've been much harder to hear the first time in the ARD meeting. I don't even know what our rights are in questioning Anna's placement. There is much to be done and many questions that need answered. Having the behavioral specialist come on board now is good timing and I hope she can give us some insight on how to help my little girl. I'm a little lost.

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.

Anna update... endo, behavior, and more

Well... yesterday was the worst day yet at school. The principal called me just as I was leaving to pick up the kids and they'd had Anna in room 300 (their equivalent to in-school suspension) since 1:30 or so. I can't even bear to write all the things she did. Let's just say that this child has no impulse control at this time. She knows right from wrong, she knows that she is not supposed to do these things, yet she cannot stop. She is immediately remorseful and sorry. We are now in week three of this behavior. We are having an emergency ARD on Thursday to institute a Behavior Intervention Plan. Yesterday, Anna got a pink slip... a discipline referral which will go into her record. What worries me most is the longterm social impact of her friends witnessing this... will she ever have friends now?

We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.

Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.

After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.

I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?

I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.

Breathe.

Behavior

We have a new behavioral specialist working with us through Integral Care (formerly MHMR). Her name is Kathy and I'm really impressed with her. She came to the house last Friday and did an intake interview with me... she was so thorough! Three hours later, I think she had a good handle on what Anna's challenges are and what we are looking to get out of our time with her. Initially I had wanted a behavioral specialist to help Anna and Dominic get along better... Anna is constantly rejecting him because she is afraid of him. He is loud, unpredictable, and causes her to be on guard all the time, anticipating the next boo-boo or screech. As he gets older, this gets better and Curtis works with him coaching him how to lower the intensity around Anna. At the same time, I hate that he already feels a sense of responsibility when he does cause a meltdown in her. Anna and I are continuing to live at my mom's house, 2 doors down from our house, while Curtis and I figure out how to put our marriage back together. What has been interesting is that both kids have had big developmental gains living in separate houses. Both kids are more independent, more competent, listen better, and overall seem happier. Sigh. What does this mean for our family?

Anyway, Kathy really helped narrow our focus to create some concrete goals. Kathy is going to observe Anna at school next week and she was also here on Monday for an observation. First off, she said that in a typical family, an 8-year old girl and 5-year old boy would not be getting along or playing together all the time. So to expect a socially-challenged, play-skill-delayed child to want to engage with her brother is just unrealistic. What we should be focusing on instead is helping her self-manage her anxiety and stress. These skills will help her more in a variety of settings and situations, help her be less dependent on me, and help her in the future as she gets older and the stresses get more complicated. So how do we do this?

We are already doing a lot of behavioral supports in the home. But I need to be more consistent with them, such as using the timer to increase independent play and using the sticker chart with rewards for positive behaviors and chores.

Kathy suggested social stories... where we create short, homemade books that we can laminate and have Anna carry around. Each social story can be about something very specific, like going to the grocery store. We use Anna's picture in it and review it with her before the outing. First we identify the stress... awareness and acknowledgement of the behavior, then we give her the language (stress looks like, sounds like, feels like) and triggers, then the strategies for coping (take a break, set a timer, reward, etc.). I think these will really help with specific, targeted behaviors during predictably stressful situations.

She also suggested videotaped interactions where we video Anna to show her the anxious behaviors to start to teach her to recognize them in herself. Then we give her tools for coping. Anna loves watching herself on TV, so I need to charge up the camcorder!

Kathy recommended some books, which I've already ordered from Amazon. These include:

~Don't Pop Your Cork on Mondays!: The Children's Anti-Stress Book by Adolph Moser
~Incredible 5-Point Scale -- Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron
~Building Social Relationships: A Systematic Approach to Teaching Social Interaction Skills to Children and Adolescents with Autism Spectrum Disorders and Other Social Difficulties by Scott Bellini

To build Anna's relationship with Dominic, we start by setting up some playdates with an older girl or two (and we have the perfect girl in the neighborhood, she is mature, sweet, and patient with Anna) that have a timed structure with a beginning, middle, and end. Once Anna is comfortable and engaged with this level of play, we introduce Dominic into the play for a short time. Hopefully, she will be willing to play once she realizes that it's only for a set amount of time.

I'm feeling optimistic about helping Anna. We are still giving the Lexapro a try though I'm not sure I'm seeing a signficant difference in her overall anxiety level or coping. I'd love to get her off of the Risperdal since it's caused so many other issues... I'm thinking that if she's not anxious and stressed all the time, she won't be as aggressive so she won't need the Risperdal. Though we forgot to give her the morning dose of Risperdal last Wednesday and she was not a happy little girl. She's getting big enough that her hitting hurts.

Anna's MRI and other testing has been scheduled for next Tuesday, February 23rd. We have to be at the hospital at 5:45 am. *Yawn.* I really appreciate any positive thoughts and prayers you can spare. We had an incident this weekend where I thought I saw some seizure activity and it is just so yucky. It's been since the 4th of July last year for any seizures, I hate that even after all this time, I'm still on guard every minute.