Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1^st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

Restless Mind

I can't sleep tonight. Tomorrow morning we will visit a potential preschool for Sophia. Preschool for my baby girl. I've heard good things about this school. It has a mix of kids with IEPs and kids without. She would receive her therapies there. If we like it and it is a good fit, we sign the papers tomorrow.

Kindergarten registration for Alexander is Thursday. Kindergarten for my baby boy. It is a half day session, but I can't choose am or pm as it depends on the class size and makeup. This means that depending on which session he is placed in, one or both of my school kids may be riding a bus. My babies. On a bus. With Alexander, I'm ok. I'm sentimental, but ok. The thought of putting my 3 year old on a bus makes me dizzy. If I could carry her there in my womb, I would do it. I have friends who have already been through this and survived. Her IEP specifies door to door service. It will be ok. She will be ok. I will be driving behind that bus on the first day, even if it means Mark misses work.

Enough of that. Recently our camera was dropped and broke. My camera is like an appendage. I cannot be without one, but fixing old cameras costs as much as buying a new one. Mark was having heart palpitations about spending the money on a new one, but this did not compare to my freak out in not having one. So after a little research we took our birthday cash and picked up a Sony point and shoot. This new tiny camera is light years ahead of my old camera and even films in HD. I'm not even sure exactly what HD is.

I've only snapped a few shots and am just learning all the settings. So far, I'm pretty impressed. I'm also thrilled that it has a rechargeable battery which practically pays for itself in a year or so. This little camera has a feature to shoot panoramic photos. You hold down the button and span to get your shot and it stitches it together. You're supposed to shoot in a straight line. I hate being told what to do so the kids and I messed around a little tonight (even though the light was a bit too dim) and came up with a few mind benders. Instead of shooting straight, I shot in an arc. Instead of having them sit still, I encouraged them to run in circles resulting in multiple images of each kid in the same shot. It's best to click them to enlarge.

Oh my sweet Lainey Lou. You won't leave your momma for school. What are we going to do with ourselves this fall?

School doesn't start for Sophie for four weeks and 5 weeks for Alexander, so I am refocusing on enjoying every last drop of summer. We hope to hit the beach this week, camera in hand.

Training Wheels, Off

non-special needs parents, try and keep up, or leave me a question in the comments. The world of special needs often sounds something like THIS from the movie, Good Morning Vietnam.

Today we graduated from the fairy tale land of IFSPs to IEPs. Just how in the world is my girl almost 3 years old?! I baked brownies during breakfast so that they would still be warm for our 10:45 meeting. I am not above bribing through chocolate baked goods. (yes, they went over quite well)

Most of our faithful team from Early Intervention (EI) joined us that have been with us for years (ST, DT, OT) though PT couldn't make it. I have come to love Sophie's therapists dearly and will miss them very much. Mark sat next to me as we listened to 9 professionals discuss our daughter's strengths and weaknesses. Does a parent ever truly get used to that? Together we wrote her first IEP. She will be considered a transfer when we move, though technically she won't turn 3 until we have been in our new home for less than 2 weeks. It needed to be really comprehensive because our new team will have to follow the transfer IEP as closely as possible, by law. Only after they have had some time to get to know Sophie can we meet for the purpose of changing it.

Unbelievably services (as in preschool with special ed support) are available through the summer in our new state. As of now we have elected to continue in-home therapies for the summer months and then enroll her in preschool in the fall. According to our new case manager, this is available to us.

I wish we could take our EI therapists (and even the team that works in early ed here) with us when we move. The writing of Sophie's IEP went swimmingly. I did not hesitate to state my requests and had very few times where I was met with resistance. In each case I was backed up by either an EI therapist or an Early Ed therapist. We have an IEP ready to go that is really, really well tailored to her needs. Some of the goals or supports are ones I hadn't even thought of, but our great team is on her side and they want the best for Sophie. Easy peasy.

I suspect that future IEPs will not be such a piece of cake (or brownies as it were). Especially as I felt such comfort and solidarity from our EI team's presence. Today was like an IEP on training wheels and after today, the wheels are coming off and we will be on our own. I know we can handle it, but I recognize that we have been in a very good place for 3 years of EI. So much is changing.

We have begun a long, long drawn out series of goodbyes in our current home town. Today, we checked one big item off of our to do list and I left the building grinning from ear to ear. Since we had Respite watching the monkeys in the zoo for another hour, Mark and I headed for a slice of pizza and a pint of Guinness for lunch. Now, if only the air conditioning repair people could get here before next week to recharge our freon as it's eighty-freakin-six degrees in this house! Oh well. It's nothing that another cold pint can't cure!

Learning to Eat with a Spoon

Speech Therapy as if written by Sophie...

Miss L. and Mom had me practice using a spoon. They cheered and said YAY every time I took a bite. Mom says learning to eat with a spoon all by myself is important, but I think it's fun.

Next time Mom better put me in my high chair as I got myself and Miss L. all messy, but she didn't mind.

I'm gonna lick it!

I told you I was gonna lick it. Miss L. was really excited about this for some reason. She said it was good that I'm using my tongue or something.

I hope to keep practicing. Mommy says we can try ice cream next (maybe Pumpkin Pie ice cream if it's in the grocery stores)

I love watching this video of myself. I made Mom play it over and over.

Time

To every thing there is a season, and a time to every purpose under heaven.

Today we released a Monarch butterfly. Alexander cared for it so tenderly. He fed it as a caterpillar, talked to it, and watched excitedly when the cocoon formed in the habitat. In the early hours before we awoke, it decided it was time to reveal itself as a beautiful butterfly. This afternoon, we set it free just when I needed a reminder that we all have our own time and pace. Camera ready, we opened the habitat but the Monarch didn't move. Alexander said goodbye, and yet it stayed still. Eventually we got on with our day. Only after we had walked away and were no longer invading it's space did this Monarch take flight. We were there, camera not ready, when we caught sight of it as it fluttered up and off to the neighbor's garden.

Sophie's yearly IFSP is coming up in a few weeks. Once again it's time for evaluations. Mark and I had already been talking about our observations that Sophie's rate of development, her pace has slowed significantly in the past 6 months. We're not saying she hasn't made gains, because she has. I've shared these thoughts with each of her therapists. They have reminded me that as a child is working hard on PT, that often the other skills get put on hold. She is currently climbing on everything and walks (or shuffles, meaning a shift of her weight in her hips vs. lifting her knees) a little everyday, but her preferred method of getting around is still crawling. She could set world speed records.

Still, for me as it is for many parents, the time for evaluations is difficult as we wrestle with so many emotions, truths and perceptions. It is a time for grieving all over again. I read over our goals for this 6 month period and realize many have not been met. Is it my fault? Have we not worked with her enough? Too much? Is it about my expectations and issues of acceptance or has her progress really slowed? Why? What can we do? How do I handle this feeling of sadness when other's would give their left arm for their own child with special needs to do what Sophie can do. Guilt over that is not helpful either as it discounts our feelings, which are just as valid.

Having Alexander has been so good for Sophie. She's had a sibling to imitate and follow around and I know that he has helped her development significantly. Now that Helena is here, I have to say, I was not truly prepared for how I would feel as I watched her develop and grow. To say I don't make comparisons is a lie. I don't want to. Most often it's just that Helena is constantly shocking me at what she is already able to do. It seems so fast as Sophie's pace has become my 'norm.' This too is cause for grieving.

This morning Sophie had her PT eval. After the test and hearing the numbers and age ranges for where she is at, I told her therapist that she's still Sophie. She's still the same little girl that she was 60 minutes ago. I said it not for the PT's benefit, but more as a spoken reminder to myself. The numbers were just where I suspected, so really it did not come as a surprise. And yes, her rate of growth has slowed. It was helpful that her PT read over the notes section of the last eval because I was reminded of how much she has accomplished that the numbers do not reflect.

Sophie has her own time. She has her own pace and that pace can and will slow down or speed up as she grows and learns. I am grateful for her EI therapies despite the negatives that go with it. Lately I've read as other parents struggle with the question of whether or not therapies actually benefit our children or if they would learn their skills anyway and in their own time. Is it worth the time it takes to do therapy? Is it worth being under the microscope at least every 6 months as our children are evaluated and scored? Is it worth the guilt we feel when we know we haven't done enough therapy on our own during the week or the frustration for having to work in too much in our daily lives instead of just living?

For me, the answer is unequivocally, yes. Yes, yes, yes. The research is there. Our evidence, albeit anecdotal, is there. Besides, if we only do therapy for 45-60 minutes per session, but don't work it into our everyday lives, then we're not really getting therapy. Even if I'm just hedging my bets and hoping that EI will make a difference, well, Sophie is worth it. She has an amazing team and I am very appreciative of all they do for her. They have taught us so many ways to help her and meet her where she is at. Things I would not have thought of on my own. They have also held me up as her mom as they grieved and cheered with me. They are invaluable.

So, as I stumble through this time of evaluations, I need to remember our mantra. She's still Sophie. She's not a series of numbers. She is not a diagnosis. She has her own time, her own pace. And she is a wonder to behold.

Grosser than Gross & other random stuff

What's grosser than gross? Helena's umbilical cord stump fell off a month ago and I never could find it. Then Mark announced that he discovered it stuck to the bottom of his sock. As best as we can tell, it was stuck either in the baby towel or sleeper that we used. This means, the cord went through the laundry and fell out on the floor a month later. That's pretty gross. What's more gross? I'll probably keep it in her baby book.

I've become quite addicted to blueberry pommegranate juice. Really, it's yummy.

Have you discovered the Redbox? It's a DVD rental vending machine. The movies are good new ones (that I missed in the theater) that rent for $1 a day. You can even reserve them online! I've seen them around but have been leery that it was some sort of credit card scam. So far I've rented "He's Just Not That Into You," which I highly recommend and "Taken." This is another really good one. I can watch them late at night on my computer with head phones on the cheap.

I've got 20 hours of Respite to use by July 1st. Yesterday I was able to do some chores and escape the house. This afternoon Mark and I are catching a matinee of the "Hangover." I'm giddy!

Tomorrow my new and super talented friend Donita is doing a photo shoot with my family. Sophie turns 2 on July 2nd (her golden birthday) and Helena is 6 weeks old, plus I just wanted new shots. Thank you Grandma Betty for the timeless gift! Check out Donita's work here. I'll post up as soon as they are ready. She was my inspiration for the flower shots in the last post, but as you will see, I've got nothing on her.

I'm happy to update that after 6 weeks, Helena is starting to really come to life. I'm still limiting my dairy intake as that seems to help her gas problems as a nursing baby. That and simply growing and her system maturing has helped tremendously. She no longer is in constant pain in her belly. Two nights ago she even slept from midnight till 5am! I'm doing better about putting her in her own bed instead of letting her sleep next to me, which will be better for everyone in the long run. The biggest news is that she's begun smiling at least once a day. We've even heard a few coos. By far and away this child has been the hardest and it has been a shock to the system. This is especially after being spoiled by Miss Sophie who has been a 5 tiered cake comparatively, despite her feeding issues and surgery early on. So, I'm happy to report that Mom and baby are falling madly in love and that she's becoming more alert and gorgeous by the hour.

What else? Sophie's wonderful PT relocated and we are so so very sad to see her go. She has been brilliant with Soph and will be hard to replace. Fortunately, we were able to slip in another PTs schedule and will pick up again without missing a beat in July. Thank you so much Cory for your kindness, patience, skill, and passion for my daughter.

OK, enough stalling. I've got to get back to the laundry. JRS - Out!

Sea of Red

As Mark was working today, it was up to me to get all 3 kids ready for the press conference (see previous post) with Gov. Quinn on the cuts proposed for Human Services in IL. It just so happened to fall during a previously scheduled developmental therapy (DT) with the amazing Ms. Judy. She stopped by just before we headed out to give me an extra hand. As both Soph and Alexander have colds, and it was over lunch time, her help was a blessing.

We loaded the CRoutan and made it on time, even riding a shuttle from the parking lot to the site. The place was packed with a sea of red supporters. The kids were AWESOME the whole time. Judy was an angel, hanging out with us and our friends Bethany and her son Jeffrey from Sophie's DSC developmental playgroup and his big brother Mark. We had a concrete floor picnic for the oldest kids while the youngest kids rode in style in their strollers. Helena slept through the whole thing. I think the roaring crowd was a bit much for her.

The turnout was amazing and the speakers were great, as usual. This is a wonderful community and I believe we made an impact on the governor. I guess we'll know soon enough as there is a special session next week.

Below should be local tv coverage of the press conference. If the embedded video doesn't work, click here.








Here's a short video of the energized crowd before the press conference started.

You're Fired

When was the last time that such a thing was wonderful news? I'll tell you when. When we were told not to ever come back, when we crossed an 'ologist off of Sophie's list. When Sophie was born there were 3 findings regarding her heart including a small muscular VSD, PFO and small PDA. None of the findings required any action beyond monitoring. Last February, Sophie had a repeat echo cardiogram that revealed that she only had a small PDA. Yesterday she had another echo and I am overjoyed to announce that the small PDA has closed on its own and we no longer have need of a cardiologist! That's right. Dr. Heart fired us and we couldn't be happier.

Other health updates are that Sophie is working on tooth number 8, a lower left molar. Next week we travel back to St. Louis Children's Hospital for an appointment with her ENT and audiology. This time they plan to isolate her ears to find out how each one is hearing. We have also been worked into the schedule with opthomology. After Sophie's last check up, we were told to come back in a year. However, the eye that she had Strabismus surgery on has begun turning inward and upward slightly, once again. I already knew that it is not uncommon to need repeat Strabismus surgeries, but am hoping that won't be the case.

In archiving my videos recently, it struck me how much she has changed in her 19 months on Earth. She's no longer my little baby. She's getting bigger and doing more every day. This update is not meant to be a comparison or brag and it is not my wish to upset any other extra special moms who I know love her. I'm proud of Sophie's accomplishments and I know you are too, just as I am proud of the little ones I've come to know and love.

Sophie has added the word 'boo' to 'peek.' Her favorite words are Daddy, baby, and Bubba (Mom/Mama comes in much further down the list). She waves and says 'bye bye' consistently and in the right setting. She even shouts it if the person she's greeting is far away. She's a millisecond away from cruising and pulls to stand like a champ. She could set world records in speed crawling. She kisses with puckered lips and sound vs. her original open mouth slobbers. She makes car and train noises when playing with Alexander's toys. She's developed a giggle and sense of humor that's contagious. Sophie nurses once at night and I expect to wean her by the end of the month. Straw drinking was a long and wholly worthwhile learning experience and without her ST, I'd be tandem nursing! She's great at putting toys 'in' (even when its other things like Daddy's slipper 'in' the bathtub or a ball 'in' the toilet). She has a great attention span, even with new toys, and gets very focused and intense. She seems to understand questions, like "where's Daddy?" because she often points with her index finger (though not every time). She often complies to requests like, 'hand me the toy.' She loves books and anything her big brother likes. In fact, she thinks her brother is the coolest guy around. She's such a social butterfly and she draws people to her where ever she goes. She also has developed a little princess attitude when she doesn't get her way, though it's so cute, its hard to get mad when she's being a stinker. In a word, we think she's pretty great.

(blog note: in the new menu bar, the VIDEO and CONTACT sections have been updated)

Another Look at Therapy n Stuff

Sophie has been doing really, really well in her Early Intervention (EI) therapies. She has Speech therapy (ST) at home once a week, Developmental therapy (DT) at home twice a month, Physical therapy (PT) twice a month on site, and Occupational therapy (OT) at home once a month. Her Developmental Playgroup (once a week on site) incorporates all of it and has been really positive for her. Next week her ST will begin filming Sophie and I doing everyday play. We're going to attempt to make a video that we can use in the DVD player of things like playing with different toys, saying the words and signing them too. I guess I'll have to wear something other than lounge pants next week. (Oh, who am I kidding?) Here's another look at recent therapy sessions with Sophia.

Other updates:

Sophie just got 2 new teeth in the past few weeks. Both are on the bottom, one is in the front/middle left, and the other is a molar on the right. She's taken to grinding them at night before going to sleep (JOY)! and she's not sleeping so great. I hope it's a passing teething thing. She's just begun refusing to eat any vegetables or meat. To make sure I had no doubt, during lunch a few days ago she shook her head furiously "NO" to the vegetables and beef and then sternly pointed (POINTED!) at the pears. If it were up to her she would live off of fruit and honey bee graham crackers.

In February Sophie has a follow up echo cardiogram and appointment at the peds cardiology clinic in town. She still had a small PDA a year ago that they want to monitor. We'll also be heading back to St. Louis Children's Hospital for repeat hearing tests. We got a good idea of her hearing last time, but this time they want to isolate each ear.

On a not so fun note, I believe we're going down the croup path for the 4th time since November. I know when the cough changes from deep and wet to a bark. Her cold came on fast this time and I'm not waiting to see, so she's on steroids, again. Good thing we had some left plus refills. Her last course was for 3-5 days, so we did 3 and she was good. Thanks to a new blog friend I was informed not to do more than 5 days on the steroids. Hopefully it won't get that bad. We had a good 2 weeks free of illness in the house that I am thankful for. Someone here has had a cold or flu bug nearly every week since the school year started in the fall. Now that Alexander is going back to preschool and our regular lives are resuming, I am prepared for the onslaught of tiny ugly germs.

All About Sophie

On Sunday Sophie laid on my chest from noon-4, alternating crying and sleeping as she cut 3 new teeth. She's starting to try and stand for short amounts of time and does quite well with help. She's a champion at the yoga position downward dog (still trying to catch this one on film) and she can hold it for 10 seconds.

Before the cold, wet weather came to town we enjoyed one last day at the park.

In PT she continues to make strides in strength and balance. Her PT would like to see her crawl more, but she prefers her signature sidewinder move.

PT was full of bench sitting (on PT's leg) and standing with support, over and over.

After her first day with pig tails, her hair stood straight up once the rubber bands came out.

In DT (and every day as she really has fun), Sophie is learning how to feed her baby dolls from bottles and spoon/fork feeding them. Sometimes Bubba helps out.

At her weekly developmental playgroup, Sophie enjoys knocking down blocks faster than they can be built up.

The water mat is one of her favorite toys,

she loves banging the drum with the feather duster,

but nothing beats the ball pit. The staff have really been working me to get her one for Christmas.

In ST we have made a few photo albums of her favorite toys and people. Books have become favorites of Soph's.

Yet no therapy or playgroup beats time spent with her best guy, Daddy.

What Do Therapies Look Like Pt. 3

Sophie's first IFSP with Early Intervention (for her therapies) was last October, (the 6 month was in April) so were due for another in the next couple of weeks. In my mind IFSP stands for I Feel Sophie's Perfect.

To prepare for this meeting her therapists have been testing her, which means working her hard, scoring her based on how she performed, and asking me lots of questions. Questions like, "does Sophie respond to her name?" Yes, just not when you're here. "What words does she say?" Her favorite is Baby, but she'll wait till you pull out of the driveway to say it. "Does Sophie look between you and Mark when you're having a conversation?" I don't honestly know, but you should see her tackle long division.

As Sophie has a diagnosis of Ds, she does not need a 30% delay to qualify for services, but we get to see how she scores anyway. I know it's a good thing to know where we are with her speech, gross and fine motor, and cognitive abilities, and to come up with goals for the next 6 months, but dang it is not fun. Our new plan is to increase her DT to twice a month which means weekly ST, every other week PT and once monthly OT.

"What are your concerns right now?" You mean in what glaring ways has she already slipped behind in her development? Ds effects every person in different ways. Sophie has peers who have lots of different health concerns, skills, and challenges. I know my daughter is a Rock Star in her own way, but it's times like these when we're forced to put her under a microscope that it can be hard.

Today I just want to shut the world out and eat ice cream by the bucket. (give me 9 months and I'll be begging for a good red whine). Then, like clockwork, a friend showed up when she didn't know I needed her with a pair of neon pink spandex HipHelpers for Soph that she ordered herself after learning EI still hasn't gotten around to it. The order with EI was placed in early July. We both blamed my tears on pregnancy hormones. HipHelpers will help keep Sophie from doing the splits while sitting/crawling/kneeling/and eventually standing. More on HipHelpers another time, but I'll just quote Paris and say, "they're HOT."

I'm off to do some damage to the chocolate chip ice cream. And now, more on therapy...

What do Therapies Look Like? Pt. 2

Sophie receives speech therapy (ST) once a week at home, occupational therapy (OT) once a month at home, developmental therapy (DT) once a month at home, and physical therapy (PT) twice a month on site. It just so happened that this week she had 4 therapy sessions in 4 days. Listen for Sophie's favorite new word "baby" in DT. Here is a look at how it went.

What do Therapies Look Like?

Sophie has Developmental Therapy (DT) at home 1/month. She has Occupational Therapy (OT, for fine motor skills) at home 1/month. Physical Therapy (PT for gross motor skills) is on site 2x/month. Speech Therapy (ST) is 1x/week at home. We're working on; taking items "in and out" of shiny bowls or coffee cans, etc. object permanence, cause and effect, sitting, pivoting, getting into and out of sitting, reaching while sitting or on tummy, CRAWLING (we're ALMOST THERE), kneeling, index finger usage, movements of her tongue, chewing harder and different foods (taste, texture) and plenty of other good stuff. She's doing great and continues to impress her wonderful therapists.