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

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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!” 😉

Thyroid and Therapy

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We recently began the journey to improve Eli’s thyroid. This was a difficult decision to make because, like supplements, it’s a slippery slope to more supplements, pills to remember, research research research (that I don’t have time for!) and one more thing that makes Eli different.
It also required blood work and a doctor who would support us.
Eli has had his annual labs every year with no glaring issues and concerns. His thyroid at age 2 showed subclinical hypothyroidism but no one we spoke to would treat it. Eli has many symptoms of thyroid problems but we were continually told that it was just Down syndrome and not thyroid.

So we waited and researched what we could.
Eventually I found Dr. P who, upon looking at Eli’s labs, felt we needed more bloodwork and thyroid treatment.
After more waiting and saving money to afford Dr. P and her consultation, we are finally on a good path.
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Eli began Naturthryoid 8 weeks ago. His initial labs were within normal ranges despite presenting many symptoms of hypo. We are striving instead for optimal numbers and already seeing the benefits.

Since beginning treatment, Eli’s attention to detail, his attention span and his processing has all improved.
He’s grown 1/2 and inch and gotten a new tooth. His health has been good and we feel like he has been able to get over illness that he wasn’t able to before (instead of a minor cold turning into a sinus infection every time).

We just had our follow up blood draw last Monday, which was part of my fear. I was worried they would find something wrong, that we would then be forced into looking at more supplements (because while A works well, A works better when combined with B but A and B can’t be taken at the same time and really it’s even better if you add C but B and C can cause a risk for seizures so we need to run MORE labs to check levels…blah blah blah…it gets crazy).
But to my surprise the dosage the doctor recommended is perfect, and we will actually be adding a new med for T3 support. (So Liothyronine in the AM and Naturethroid in the PM).
Even better? This blood draw was by far the best one we have ever had.
Typically they stick Eli in the arm they think is the best, and nothing comes out. They dig around for what feels like forever before giving up. Then we stick him in the other arm which gives blood drop by precious drop and we can never have all the labs we want because he never fills a tube.
This was huge.

So right now, in the moment, I couldn’t be more thrilled with the results we have seen. I wish we could have done it sooner and I would urge all parents to strive for optimal levels and fight or a doctor who will support you.
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On the therapy front, I feel like we are winding down and gearing up all at the same time. Our therapists are preparing us to age out in THREE MONTHS, trying to update new goals, and pushing Eli even harder than before. I don’t know what we will do without them.

We are currently working on self help skills like dressing, and potty training.
Apps we are using:
http://www.pull-ups.com/potty-training/time-to-potty-app-page/1226
https://itunes.apple.com/us/app/potty-time-with-elmo/id525507410?mt=8
https://itunes.apple.com/us/app/potty-training-time/id473203652?mt=8
DVD:
http://store.signingtime.com/potty-time
Potty training accessories-
http://www.amazon.com/3–Toilet-Trainer-Potty-Seat/dp/B000VY1WPC/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1422894463&sr=1-1&keywords=3-in-1+Toilet+Trainer+Potty+Toilet+Seat
Self help-
http://www.amazon.com/dp/B00168CPQM/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IBHFC55867TIS

We are looking at iPad apps to help with communication.
Apps-
http://www.nikitalk.com/
http://www.assistiveware.com/product/proloquo2go
http://www.speech-ez.com/
http://www.geminii.com
https://itunes.apple.com/us/app/i-hear-ewe-animal-sounds-for/id304093970?mt=8
https://itunes.apple.com/us/app/articulation-station/id467415882?mt=8
https://itunes.apple.com/us/app/smalltalk-phonemes/id384170714?mt=8
DVD-
http://www.amazon.com/dp/B006G18XN8/ref=wl_it_dp_o_pd_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IKOUPJ72CJBP0
http://www.amazon.com/dp/B000Y1NNH2/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1LRF5GW126UR4

Eli has gone down to two PT visits a month and we are working on some of the same skills (clearing stairs and thresholds without sitting down, climbing play equipment independently, and keeping his knee from popping back), but we have also added riding a trike to the list.

In OT we are focused on opening closures, comparing and sorting, and fine motor activities including play doh and theraputty.
http://www.discountrehabsupplies.com/s.nl/it.A/id.2864/.f

SLP is working on following directions and some of the same stuff that OT is working on.
Balance Board- http://www.amazon.com/dp/B000N40SDC/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1VQGPD35HCDPY
and more walking for breath support.
We are also working on blowing- so blowing a kazoo, blowing tissues and cotton balls across the table, blowing a pinwheel…he’s recently learned to blow his nose, but only when he wants to 😉

SLP has been the biggest challenge and it feels like the area we have made the biggest strides in and yet made no progress at all…if that makes sense.
Since beginning the Gemiini program, Eli has started to pay attention to our mouths when we speak, began babbling again, he has better lip closure, is copying “fish lips” and doing tongue play. He is making a roaring bear sound, and he’s saying “mmmmm” for “more”.
He has also said “mama” and “dada” a handful of times and is a bit more social around new people (waving, showing people with his fingers how old he is, and generally being more loving and comfortable around others). This is big! It’s not words, it’s not talking. But it’s HUGE in our world.
http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html
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Eli has his first assessment with the district tomorrow, so I am sure I will be updating on how that goes. I’m nervous and excited at the same time.
Happy Monday, friends! 🙂

PPCD

IMG_6251Hello 2015! Wow…the last 10 months have flown by! Thanks Wyatt! Since making the decision to stay home, I foolishly thought I would have more time for blogging and photography. But let’s be real, if my teeth are brushed and I’ve showered before I go to bed, that’s a great day. Extra stuff outside of therapies and taking care of my kids? Bah!
That’s actually one of my resolutions this year- to take better care of myself and to take more pictures of my own kids. In this blog you will find non-iPhone pictures! Hello 2015!

So a lot has been going on with our little family but the big thing on my mind tonight is Eli’s school. In 4 short months, Eli will age out of EI. Leaving us with a big decision to make.
It’s brought up so many emotions for me. My baby isn’t a baby anymore.

In December, I attended a meeting through the local school district to gather more information about the program. I initially only went so I would know what I was saying “no” to. We had already decided that homeschool was the best option until Eli is 5, then we planned to mainstream him. (Since we are too “rich” for Medicaid and too poor for more than what our private insurance is offering (a pathetic 20 visits a year of all therapies)).
But because I like to research and explore all my options, I hired an advocate to attend the meeting and off we went! I was ready to fight and felt armed.

And perhaps “fight” is the wrong word…at least for now. The meeting went well. Our advocate is amazing and very experienced. I like her a lot.
One of Eli’s therapists also came to support me and offer as a witness to my description of Eli.
It felt good to have someone else who knew Eli speak of him so highly and support my description of his abilities to the school district.
The people in attendance were mostly supportive and primarily there to gather information and answer my questions. Upon learning of how well Eli was doing and how large his sign language vocabulary is, they were eager to meet him and facilitate his learning.
There was talk of a possible ASL certified aid to work specifically with Eli- which I’m told is a huge offer.

When we finished, I felt a little better about how the program works but I was forced to look at enrolling Eli as a real viable option.
Our advocate pointed out that we could definitely homeschool Eli, drive him up to the school for his therapies and look at putting him in when he is 5. BUT, if we want the best chance at full inclusion and good socialization, she suggested that we dive right in. 5 days a week, 3 hours a day beginning *the day* after his 3rd birthday. AND ride the bus.

This is the part where I admit that I cried a little at the meeting. And I may have cried even more in the car on my way home.

I feel frustrated because I feel forced into a decision I really don’t want to make. We had already decided that homeschool was the best choice. And before you say anything, I know socialization is important and I know he can benefit from the PPCD environment- there is good there and I know that. It’s the fact that it’s conditional….IF we want Eli to be considered for full inclusion for kinder, we have to build a relationship with the school and teachers and therapists.
It just doesn’t feel right. But I’m jaded from working in the public education system. I don’t trust the aids as far as I can throw them, I don’t trust the system, I don’t trust that these people have any vested interest in Eli’s success.
But try as I may, literally every person I spoke to about this transition had all good things to say. Literally.
Which makes me feel crazy. Do I want someone to tell me it’s going to be awful and that I’m going to have to fight people? That what I saw and experienced is truly how it is?
Maybe I’m trying to hold on to my baby a while longer. Maybe I don’t want to let go and trust someone else.

But never the less, from special ed teachers and therapists in the district, to educators and other families who have been through PPCD (even attended the program Eli is set to attend)– all good things.
rest of the world that needs the help. IMG_6277
I am hoping we will be one of those good stories.
Do I think we will have battles? Absolutely.
But we have our advocate, out EI friends, great therapists by our side and confidence in a good plan for our Eli.
A different plan but a plan.

I’m trying hard to see God’s will for this situation and give Eli the best of what we can provide.

I’m looking at the Medicaid buy-in program for Texas. I’m looking at trying to get at least 1-2 private speech sessions a month. I’m looking at iPad grants with PECS technology. And I’m trying hard to put more faith in the system (and in Eli). In the meantime, we are soaking up our final days with ECI and trying to implement an afternoon homeschool curriculum.

Of course you know I will keep you updated 🙂 it’s been a crazy journey already but I’m feeling a bit stronger today and more confident in our plan. I often wonder if things would be any different or any easier for Eli if we could get him all the best that money could buy. And then I’m reminded that Eli is Eli no matter what and it’s the
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#keeptheschoolsicknessatbay #carpoollineherewecome
#ppcdorbust