what do you do?

We all learn differently. We have different interests, passions, dislikes, skills and struggles. If we all learned the same there wouldn't be half the new discoveries we have today. So it is that each child learns differently.

So what do you do with a child who has so many different levels of development? What we have learned is to start from the beginning and work forward. Julia has an amazing academic intellect, she has an amazing passion for the arts, which makes sense with her being such a great visual learner.

Over the past month or so we have once again tweaked our parenting approach ( I think we may have it figured out by the time we retire!).  We had to look at Julia, who she was, where she has come from, where she wants to be and how we can help her get to a positive place. Through the help of our team and some other exterior supports we have worked very hard once again to make the scaffolding for Julia's daily interactions. It isn't easy! As most of you know i am a HUGE creature of habit and I never like to admit defeat.  So changing things is never an easy task in my world!

So where are we at now? We have made some progress and we have regressed. Most of our tactics mimic the parenting a one year old right now. It has taken a lot to go back to toddler world, but it has also brought a new peace of not micro managing (don't worry, i am still micromanaging the cats). With this peace however has brought up for Julia truly where she is developmentally.

My mom read a story one time about where to guide a student. A student got a A, a B, and a D, so which subject do you make him/her work at? My natural instinct would be the D... pull up that grade! Who wouldn't  want to make the D better? The answer is A. The A is what they are good at, what they are passionate about, what the feel in their heart... that is what you encourage then! Julia loves the arts, so that is where we are at. We have a 5 year old with strong struggles, but she has a passion for art. So we plug away everyday at the struggles, but we encourage the passions; coloring, movement, stories, music etc.

She is Julia, made by God. We are doing are best to help her cope and give her the tools to thrive, with the end goal of being understood by her peer group. Jules family partner and I were talking yesterday and I think we might be onto something... "no one in life is totally stable, it is all in how you use your resources"  :)

sometimes it's best to say no

One of the things we are often faced with is where to draw the line for what Julia can handle and what she can't handle. With the start of school has come invitations, functions, play date requests etc. No one can say yes to everything, but how do you know when it is going to be a good experience or a bad one? Some of it is trial and error, some of it is knowing Julia. At this point in our journey Ben and I can safely say we know Julia the best. We know what helps a good day continue, what makes a bad day get worse, what cheers up, what brings down.  We also know some things to look out for in her mannerisms. With Post Traumatic Stress Disorder comes a slew of different scenarios each day. Everything can be going great and then as if a switch was flipped the rest of the day is a disaster. Maybe it was a smell, a feeling, something she saw, a memory that jumped back in for a moment, a combination of the two or just her delayed social/emotional behavior trying to process everything that is going on every day. When we have one of these days with Jules the best thing to do is bring her back to reality, even if it means saying no to something fun.  Is she then being punished for her earlier trauma is doing to her? No, in fact it is simply protecting her. Stimulating a child who has PTSD on an off day is like poking a bear, it only ends badly. We made several attempts to just go with it and still bring her to functions regardless of what her state of mind was. Why not? No one likes to miss out on fun! But after enough failed attempts we learned it is better for everyone if we teach her to know her limits. Empowering her to know her limits will help build a foundation for her throughout life to keep herself safe, even if it means missing out on some fun.

Is it even worth it?! (yes!!!)

As many of you know Ben and I are going away for a few days. As we prep the kids with their stay to grammy and grampy's (thank you so much!!)  we are faced with yet another result of Julia's earlier years. Julia gets mad when we go away. With good reason she often has little faith that when we leave we are going to return, and words mean nothing to her. So Julia's way to show her fear and anger for this is to make the days leading up to going away as hard as she can for us. Yelling, screaming, hitting, and just all around defiance fills our days. We do what we can to just move on and deal with what we need to and not everything little thing. It is one of the more exhausting things we deal with at this point. We can leave for a night, a day, even when Ella is at children's for a few days we are met with such defiance. The return is much the same, it takes days for her to get herself back to a calm state from the simple reason that we came back. Packing for something is hard in itself, getting kids ready also a challenge. I have an amazing respect for parents with children who have special needs who brave going on vacation. the before and after often seem to cloud and overpower the R and R in the middle. That being said, off we go, to take a break, breathe and get some energy back to brave the return :)

meetings meetings meeting

so many meetings! Those of you who have the privilege of interacting with us during the week know that we are in and out of meetings all the time. So i thought i would just recap what all the meetings are for. We have several people on the team right now, and each one plays a very specific role in helping our family move forward.

We have a case manager who I meet with on a weekly basis. Her role is to help brainstorm what our needs are, how they can be met and what goals we have already met.

We have an In Home Therapist who we also meet with at least on a weekly basis. Her role varies according to what we need most. Sometimes she meets with just me and we talk about my daily stresses, how I can better my relationship with Julia, how to interact with the public, how to handle things that come our way, that is her life coach role. She is also in charge of helping all 5 of us communicate as a family. Even without a complicated dynamic most families have a hard time communicating within themselves. Our IHT is in many ways like a translator for all of us to the rest of the family. She also is a fountain of knowledge for research and techniques. In many ways like "tricks of the trade" for dealing with a child with special needs.

We have a family planner who I meet with weekly. Her role is to make us look like a functioning family (good luck to her!). She helps with looking at a particular struggle we may be having and finding solutions.  She has been out on errands with us, interacted with us, brainstormed solutions, rehashed old ideas, new ideas, i even get to do crafts with her!!

We have a trauma therapist who Julia meets with weekly. Her job is to help Julia work through her past. Sometimes I attend her meetings, sometimes just Julia does. We have all been to a meeting. Sometimes Ella and Caleb are in the meetings. It really depends on the week and what is needed. Julia has been giving some tools to help control her anger from this therapist, and we have gotten some amazing incite into the mind of a traumatized child.

We have added a new member to the team this week, for weekly visits. Her role is to interact with the kids. She is going to be doing this one on one, or with two, or with all three of them. It all depends on the need that week. She will be helping out with interaction, rules, tools etc. She will be doing it for the children as the IHT helps me to help the kids.

That is our professional team in a nut shell. As you can see that leaves me with a minimum of 5 meetings a week. They are a very knowledgeable group who has made it possible for our family to make steps forward, and when we regress the strength and guidance to push harder to get to our goals. To be honest I think every family with children should be given a team of experts to help them through life. We have learned so much, and are always tweaking what we do so that we are doing what is best for our family.

Prayer Requests

We are often asked how people can pray for us, so I thought it would make sense to answer it here :)

1. Endurance. When faced with a child who suffers with a disorder or a disability of any sort it takes it's tole on the entire family.  Some days it is hard to see the light at the end of the tunnel, simply put because some days there is no light. 

2. Patience. Three children isn't easy street. I have many friends who understand that first hand. Having one child with a disorder, one child with some significant health concerns, and one poor healthy little boy with no squeak in his wheel presents it's own delicate dynamic on how life works.

3.Understanding. I think it goes without saying that our life isn't quite the norm. so what? Ben and I have had to make some very hard choices in the past two years. have they all been right?..... absolutely not! don't tell anyone, but we are human too!! that being said we have had the blessing to have a very qualified, caring and educated team of professionals working with us since last November on how to help our family work. I can not say enough about them! They work with our values and faith and every week through several meetings come up with a plan. Some tactics are to help Julia, some are to help Ella and Caleb, some are to help the family and some are to help Ben and myself.  One of the biggest obstacles Ben and I run into are people who think they know how to better handle a situation. It is hard sometimes to have the guts to just stick to our guns because we know what we are doing is what needs to be done for our family.  It is going to sound silly, but I have a very hard time standing up for myself.  So the prayer request there is understanding for those looking in, that they see Ben and I have given it go God and he is guiding us along. Not for understanding as to why we do what we do, just to understand that what we are doing and how we do it is what is best for our family. Roberts, family of 5.

4.Space. Everyone needs their own right? As most of your know, all three children live in one room. we have 850 sq ft of room in our home. Let me say that I am thankful for the 850sq ft. For those of you who have been following Ben and I from 1999, you know what we started with and where we have gotten. Coming from credit card deb, totaled cars, and student loans, to marriage in 2002, a pregnancy in 2003 which tested our faith in March of 2004, Ella in 2005, Caleb in 2006 we have come a long way in our short lives together. Our home gives us shelter, safety, love, friendships, fellowship and opportunity. If need be, we will live in that space forever. That being said, I have been staring at some rough drafts of an expansion on our house thanks to a very sweet couple who I can not say enough about, so I will just leave it as they are more inspirational than they know, and also are a welcome smile when faced with the reality of sitting in children's hospital with the unknown ahead of them ;). We are ready for what God has in store for us, if he has more "store"age for us that would be nice too :)

Using resources

As many of you know Julia spent the past few weeks at in inpatient campus for children. The goal was to observe her and try to help her manage some of her more pressing issues.

Julia was officially discharged today. The past few weeks have been long, between meetings and decisions and keeping everything as normal as possible. So what was the point of her stay? Julia struggles greatly everyday with a few disorders. Ben and I are parents, we love, we care, we protect, but also we know when we need help too. Part of being a parent is knowing your limits and using your resources. Through the guidance of our team and a lot of prayer we followed the suggestion to have Julia stay at a place for children who need a little extra.

What was the result? Julia got some much needed help with her sleep so fingers crossed that continues at home. There were no real surprises, more of validating what we knew. In some ways it is nice to know we are doing the right thing, in other ways it would have been nice if we were wrong... we will just say we have our work cut out for us. Beyond the information we also have a few new resources in place to help us along our journey, which should bring some reprieve to everyone in the family in the long term and short term.

So on we push, family of 5 doing what we need to to best provide for each other. It isn't an easy road, but we will do it together and come out on the other end.

Inner Beauty

http://www.huffingtonpost.com/lisa-bloom/how-to-talk-to-little-gir_b_882510.html?ref=fb&src=sp

I am sharing this link for a great reason. Julia has an amazing core. She is smart, she can sing, dance, story tell, laugh, create, imagine and listen. All of these amazing qualities have nothing to do with how cute she is, and they don't need to. She is beautiful because of how God created her. We as a family are choosing to follow the lead of this article. We ask that as you interact with her you follow suit. If you need ideas feel free to ask! If you know you are going see her have a sentence ready so you don't get stage fright :)

Why is it so important for us to address this? Julia has learned some traits in her earlier years that are defense or survival related. One of those traits are getting what she wants due to her captivating appearance and charm. It is very clear to her team and to us that she has perfected this skill and is quite successful in using it. Inner beauty last a life time, it is built upon, shared with others, respected and crucial to having self respect and confidence.

With everything we are working on with Julia, the end goal is to give her life tools, regardless of what stage she is in. Her foundation is going to be built on knowing she is respected for what she is made of, not how cute she can look posing for a camera.




How do I learn just who I am? 
I learn from you who I am.
Within your eyes I see
reflected me.
Within your voice I hear
how you see me
You are the mirror that I look into
and mold the image of myself.
I sense the way you hold me,
and from your touch
I feel my form, my shape.
And if I like what I see in
your eyes,
your voice,
your touch--
My heart responds and reaches out.
Then in its reaching, grows and grows,
until I see myself
as separate.
That sparate self--in turn--
can love you back.
Because you taught me
who I am,
and I am loved.