ARD, IEP, PPCD

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Eli had his first day of PPCD. If you must know, I didn’t cry until I picked him up. Dropping him off was like any other day. Because he started school with only 6 weeks remaining in the school year, I didn’t get the experience of walking him back to his room and talking with his teacher. I sat in the car rider line like every other parent (I’m a real mom now, I’ve decided- I’ve leveled up!), I dropped him off and didn’t look back. 

But picking him up? That was different. The three hours he was gone, I thought of nothing but him. What he was thinking and experiencing. I grappled with the trust I had just given to these strangers. I had handed them my best three year old. That’s a little scary. 

I sat in the line anxious and excited to get him back. He walked out of the building holding his teachers hand, back pack on his back and a smile on his face. I was so proud in the moment that I couldn’t help but weep. He’s so great. Adaptable and flexible. He’s eager to learn and wants to know more about the world around him. He really embraced the change and has been thriving there ever since. 

As much as I hate to admit it, starting him (even with only 6 weeks of school remaining), has been the best thing we could have done. His ARD went so smooth, it was scary. We hired an advocate to help interpret and bring a sense of protection over the situation. I felt safer with her there and and more able to focus on interpreting the ARD paperwork instead of worrying that I would miss something or get tricked into something that isn’t in Eli’s best interest. And the best part? Eli actually looks forward to going and I get more time with just Wyatt and Ruby. It was the right move. 

The staff at his school has been very supportive. He’s currently receiving PT, OT and SLP while attending PPCD. Here are some important take always from my first meeting:
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1- Hire an advocate.
 I would highly recommend hiring an advocate from the very beginning. Most people only look into one once there are problems but I say start with the best and get the best. I felt protected and safe with someone who knew the law. I could focus on what was being offered and going over paperwork instead of stressing over laws I don’t understand. 

2- Have a pre ARD.
I requested Eli’s paperwork prior to the ARD. I went over it with a fine tooth comb with my husband. Then I went over it again with my advocate. From there, we contacted the coordinator to let her know our talking points and concerns. We were able to resolve issues outside of the ARD so those changes would then be reflected on the new paperwork instead of arguing over issues at the meeting. It helped me feel more prepared too. 

3- Ask questions.
If you don’t understand something, ask! It’s that simple. You’re adding a lot of new terminology to your already busting special needs terminology. Just ask. It’s easier that way. 

4- Make sure goals are attainable.
You will see the goals outlined by the school and based on what they are offering (push for as much as you think your child needs. READ that evaluation!) make sure that the long term goal is reasonable as well as the short term goals to get your child there. It’s a lot of think about- will Eli be able to complete 20% of this task in 6 weeks? I’m not sure, but ask. What do they normally see? How do we adjust this goal? How to we measure progress? Are there other ways to assess his success? 

5- Relax and trust them!
That’s been the hardest one for me. I would say this is an emerging skill ;) but you have to give them something. They are the ones who have been charged with taking care of your child. Instead of focusing on the negative stories all over Google, focus one what you actually see. Eli’s principal actually pushed for even more therapies than what we had lined up (and we were perfectly happy with what was being offered!), his teachers seem to genuinely care and the whole front office staff already knows who he is. PPCD *is* a gift and I have to give them some trust or Eli will never get these valuable experiences. Will we have some negative experiences? Yeah probably. But isn’t that part of life anyway? I can be their friend until we aren’t anymore and then we will already have support in place to address issues. 


With only 13 school days remaining, I’m actually sad to see it end. He brings home work every day, he’s always got the sign of some kind of craft experience on his person (paint or markers or glue!- he participated and made something. That makes my mama heart happy), and he really likes it. Our lives are busier and our mornings are more of a hustle and bustle but this is good for all of us. Looking forward to our new partnership and growing together. 

For more ideas, IEP and Educational ideas, check out: https://www.pinterest.com/1213rockinmoms/iep-and-educational-information/

Thyroid and Therapy 

These two things don’t normally go together but I thought I would give an update on Eli’s progress. 

We have started private therapies since Eli aged out of our state early intervention program. We now go to a facility twice a week for his services. 

We have been very blessed to not have a lot of extra appointments or doctors added to our life. We know that. Yes, we have additional things we have to do because of Down syndrome but in general we haven’t had the experience of driving all over town for appointments…until now. 

I don’t think anyone really told me how big turning three was. I knew Eli would go to school and I knew he would lose services but I didn’t realize what we would be adding. I worried about how it would all work out constantly. But now that we are in it, we have some adjusting to do. 

School / Therapy 

Private schools and private therapies are crazy expensive. About 6-8 months prior to his third birthday, we began to really dive into our options. My parents have been gracious enough to offer to cover tuition for private school for Eli and Ruby. Obviously most people don’t get quite that lucky and we feel super blessed. Eli and Ruby will both attend a private inclusion play-based preschool twice a week. Eli will attend PPCD three times a week in addition to that. He’s a busy boy! But inclusion was an important component for us and Ruby will definitely benefit from the challenge. If it becomes too much for Eli, we will consider only attending PPCD for him. But for right now, this is the plan. 

We have ended our ND program for now. It’s very expensive and Eli is getting so much therapy as it stands. Also, our therapist is no longer coming to Texas so it was time. The universe said so and we accepted reluctantly. 

Private therapy has begun instead. We had applied for Medicaid for Eli twice before. Once because we were told that Eli automatically qualified based on his diagnosis. This was false. We were denied twice because the program is income based. When we applied again 6 months ago, our family situation had changed. We have two more children and one less income. The third time we applied, I decided to try for Medicaid Buy-In. This time, it seemed that Eli’s Down syndrome was actually a factor. We were approved for that and HIPP Texas. We pay a small monthly premium for Medicaid and it covers all his therapies. To put this into perspective, we got a phone call from the therapy facility prior to attending his evaluations. The call was to inform us that the three evaluations were going to cost us just under $1,000…which is obviously an incredible expense. Not to mention the cost of attending weekly sessions. But Medicaid stepped in and covered what our private insurance didn’t cover. What a huge blessing! I’m blown away still. 

Medicaid doesn’t cover anyone else in our family, which is why I think his diagnosis was a factor here. But either way, all we wanted was to make sure his therapies were taken care of and that we were getting him the best we could offer. He couldn’t go without therapies and while PPCD does work with him, that time is limited. 

The private facility offers experiences we can’t give him home or school. They have equipment we don’t have access to and what seems like limitless access to tools and materials we have only dreamt of. It’s also a good thing for my family. It challenges Ruby outside of the house, creates a routine, and gets us out and about. While it means we are less available and busier, it’s a positive overall. 

PPCD has been great. We are two weeks in and have already seen some positives. Eli is a little less shy and more flexible. He seems a little more social and is playing using his imagination more. He has said “mama” without prompting and imitating more noises and sounds (including the “lalala” sound which we have never heard before). School is great and we couldn’t be more thrilled. It’s the first thing Eli wants to do when he wakes up and that makes my heart happy. 


Health / Supplements

So far, we have spent a lot of time working with our local DS clinic as well as our pediatrician, ENT and naturopathic doctor. This seems to meet all of Eli’s needs for now. Our big focus has been on his thyroid and growth. Eli has high vitamin A levels and we are looking into wycwe are supplementing T3 levels. Because of this, we are stopping all our previously used supplements and looking into other options that specifically target what his blood work indicates is needed. It was a scary thought initially but I have to admit to myself that these supplements are designed to make Eli healthier and beyond that I have seen no difference between Eli on supps and off supps. Has he been healthier? Yes. Does it make him smarter or cure Down syndrome? No. Do we want the best vitamins that his body actually needs? Absoluteky! That extra chromosome means he processes things so differently than we do so I want to get it right. 

We have continued cranial sacrial work as well which is great just for sensory if anything else. 

The last thing we are looking to explore (slowly) is growth hormone. We know that his height isn’t really that big of a deal and I’m a small person to begin with. If he is going to be small then we are ok with that. But his dad is tall, and Eli at age three is in the same shoe size as his 1 year old brother. So we feel like this is something that needs to be addressed. We will be gathering more research and working with our doctors before making any moves. 

There are days it feels overwhelming to have to consider all of this, but there are far more days where it’s worth it because I see how well he is doing and how amazing these opportunities are to make sure Eli is at his best always. 

Are we busier now? Yup! But it’s a good busy. We were ready for it and I feel good about these changes (no matter how many times I whined and worried to everyone else). You were right. It’s all good. 

Family Update

Summer is settling in and I’m slowly accepting it. For Texas, we have had a pretty mild start with lots of rain and overcast days. I’m not complaining. 

Last night, I sat on the driveway with a cold beer in my hand while my children ran up and down the street. The breeze was helping with the humidity, the sunset was beautiful and I had the sweet scent of Gardenias wafting straight to my heart. That smell…it only comes this time of year and I’m always caught off guard when memories come flooding back, triggered by that simple little white flower. 
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On this same drive way, three years ago, I was painting and preparing an old armoire with the smell of Gardenias in the air. The armoire now resides in sweet Rubys room after many hot nights of refurbishing and transforming that old piece of furniture. So many hopes and dreams…I would come home every day after work to dive back into my project. 

A girl. I was going to have a baby girl. 

So of course the armoire needed to be the perfect shabby chic coral color with wallpapered insides. My heart swelled. What would this armoire become for her? A dress-up closet? A place to store toys and dolls? The perfect tiny linen closet? Would she want to repaint and redesign it later? Would she take it with her to college? 

Because I wasn’t the one carrying her, I would spend countless hours imagining what that pregnancy was like. What her personality was. What she would look like. I tried to imagine how I would feel the first time my eyes met hers. And I filled my time up with preparing the perfect nursery because it was my only way to connect with her. 

Ruby will be two in August and I still feel like I am working to learn who she is and understand her. There are so many days I feel like I’m failing her. But then the wind blows, and the sweet scent on the air pulls me out of my thoughts. I look down and I see her standing there smiling at me. Her favorite blanket tucked under her chin, she waves and says “hiiiiii” and then runs away laughing. 

“She’s going to be ok” I tell myself. 

And she will. 

SPD has come in waves. When we make a gain in one area, SPD comes back to remind us that there is still real work to be done. Now that Eli is in school and has private therapies, I am busier than ever. We are not home as often and Ruby is forced to face things that agitate her. Thank you SPD. :) It challenges me- all the things I thought I knew about parenting and being a mama…all the things I said I would never allow my children to do become so relative when run through the “SPD” filter. My heart has grown in so many ways and I have a new respect for my mom and other moms like her. I also care a lot less about what other people think, because they don’t know my children or our situation. Grace. I’m trying to have more of it and give more of it. 

I’m still learning. I think I always will be. But learning to embrace who my children are instead of who I imagined they would be has been such an introspective journey. I’m learning more about myself and enjoying these changing seasons. The Gardenia is a picky little plant- requiring just the right environment to flourish. It means “secret love” but the secret it out and I want to spend more time with this fickle flower. Oh my precious Ruby- I’m working on your environment. I want to get it right. I want to see you flourish and I want to enjoy the love the blooms as a result. I know you do too. I want to be a mom worthy of you. 

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