ARD, IEP, PPCD

10941416_10203853210906191_2255574600418874446_n

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:
____________________________________________________________________________________

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. 

Graduation

Excuse me while I blow the dust off this ole’ blog. My new years resolution of taking more pictures has happened…but on the business side. I have been so busy with work that I haven’t had any time to come over here and share my thoughts.
I have a lot to say, but I think I will focus on a certain little boy who started this whole thing.
Eli is turning 3 next month. Yeah, I know.
3 isn’t *that* old, but it feels like he’s been here forever with us always.
Eli is my old soul and his little world is about to get much bigger.

In Texas, children who participate in the ECI program “age-out” when they turn 3. They can either elect to go to private schools/therapists or go to the public school system.
We have decided to do a combination (thanks to a very generous Nona and Papa Red).

This morning we had a small, intimate celebration to mark Eli’s graduation from ECI. A few of the people who have become part of our family through ECI were able to make it. I think my heart exploded when our original speech therapist walked in- she has a special place in my heart and just seeing her reminded me that I won’t get to see her anymore. Let’s just say there were tears.
You let these people into your home and hearts. And if you are anything like me, you love them hard because they are busy loving your child. They are truly family and no words would ever be able to express how I feel about them or how thankful I am for their knowledge and expertise.

In the fall, Eli will be attending a local public school 2-3 days a week (we haven’t fully decided yet) and a private school 2 days a week. The reason for two different schools is that Eli will be in a full inclusion environment at the private school. IMG_0098

IMG_0105
It’s pretty obvious why we would want him to have an inclusion environment and as his mama it’s been so clear that he is ready. I almost feel like he’s missed out on some social opportunities because he has been home for 3 years.
But, we are in the middle of an a Newman revival and some good stuff is on the horizon.
We will also be going into private therapies to supplement what the school provides and what he has lost with ECI. (If you are at all interested in private, check out all your options and speak with your coordinator through ECI services. Medicaid, medicaid waiver and HIPP are all great resources to help therapies continue after birth-3 programs end). Part of me wonders if we will ever *not* need therapy for Eli. If he always needs it that’s fine, but I would be lying if I said I wasn’t excited for a break over the summer. I just want to soak them up before I’m that carpool mom running my kids all over the city.

I’m pretty nervous about my first ARD meeting, which is happening next week. We decided to hire an advocate going into the meeting, instead of waiting to need one because there are problems. I’ve been so pleased with her help so far. As a former educator, ARD meetings and stuff like this become so much a part of your life and day that you don’t remember what it was like to have no clue what is going on. She keeps me logical and focused on the task instead of the emotional aspects (I’m on my own, there) and helps me understand what is actually going on.

So I think my next post will include info on ARD meetings- how to prepare and what to expect…which means it will be crazy and goofy since I have no idea what I am doing 😉

Anyway, just a short little blurb to say “I’m still here! “Eli is doing amazing!” “The Newmans are doing alright!” 😉