sunglasses it is then!

Over Christmas break and into the start of the new year Julia spent some time at a CBAT level of care in Boston. It wasn't an easy decision, it never is, but it came down to safety. For weeks Julia was observed by, met with, and interacted with several professionals to try to get to the root of some of Julia's dissociation tantrums. In the end, there was significant progress! Some medication changes, new coping skills and tools, and more tests lined up. We got to work closely with the members of Julia's team at the facility, along with our current team. It is such a blessing to have so many people to help out!

So what have we been up to since Julia is home? She has a coping tent in her room she can go into if she is feeling confused or frustrated, filled with blankets, stuffed animals, stress balls, cubes, coloring, and pictures. I can't say enough good things about this tent! Who wouldn't want a tent to escape into when the world got to much!

Julia also brought home a bear to pass around each night to someone for doing something special, as a tool to teach that everyone is important in the family, even if they don't have several needs. For an example, over February vacation Julia got the bear one night for unlocking the door to the girls room....since Caleb so nicely waited until Ben, Ella, myself and him were in it to lock it from the outside. Thank goodness Jules was there to get us out! Heroes come in all sizes for all reasons :)

She has a new understanding of what is a correct response to anger and confusion, and what is a dangerous one. Kim, one of the therapists that comes each week has been working diligently on understanding different feelings and emotions. We even took a field trip to the library last week with Kim and Barbara to read a story! (who said therapy can't be fun!)

One of the other things that Julia brought home was information from those who worked with her. I don't know anyone that enjoys waiting for results of tests, for themselves or for someone they love. It is a new world for me when it comes to Mental disorders and how to treat them, what to do in every situation and what not to do. So the anxiety of waiting to see what weeks of getting in my daughters brain to find out what she thinks was not a walk in the park. What if I was the problem? What if she doesn't really feel safe at home? what if whatever they find is something I can't help Julia with? What could this poor kid possibly have going on in side of her?

The discharge paperwork was insightful, helpful, encouraging and yet still so heartbreaking at the same time. We are doing what we should be doing, which is great... but why didn't it help? Well my friends, because as it was put to us "we have a very long road ahead of us". By long road, they mean life long... just in case there was any confusion there. Julia did great in her placement, showed who she was, what she felt, and where she was coming from to the best of her ability. The best part about where she was is that they understood the way  she was communicating, and not  just how she appeared to be.

So what's with the sunglasses? ( I know you were wondering :P) Julia has issue with staring, pretty much all the time non-stop. This can be problematic when where you are staring isn't where you are walking, or eating, or playing etc. One of our bigger issues is at the dinner table. Julia stares at everyone to see what they are doing, it can be messy at times, both when she misses her mouth because of it and how upset the other two get when she is staring. So now, if you come to dinner at our humble abode, you will be dining with a happy girl in gem trimmed sunglasses. A girl who no longer feels bad about constantly staring, a girl who no longer gets spoken to several times during the meal. Instead you will be dining with a little girl, in pretty glasses, a smile on her face... still staring.... it's what she does, but with the confidence to keep on trucking :)

Did it come from a professional? no. Is it rude to eat with sunglasses on? perhaps. Do people ask about them when they see her in them? you bet! Is she proud of who she is... sunglasses and all? absolutely! So is her big brother and big sister.  Life isn't about trying your best to fit the mold. Life is about living, loving, and learning. Julia is learning to love living. The struggles aren't going to go away, there will be ups and downs. No one is going to have all the answers for her, she will choose her path. Some days that path may bring her inside her tent confused frustrated and upset. Some days that path may be full of clarity and smiles... either path she chooses, the 4 of us will be with her, proud of who she is, sunglasses and all :)

beyond what your eyes can see

Unfortunately through the past few years we have seen a common thread among people we encounter with Julia. And it usually plays out the same. We often get questions, followed by advice, ending with "well you would never know it" or "I have never seen it".

It is funny how people view a mental disorder differently than a physical one. If someone is diabetic do you doubt them based on the fact that you have not seen them go into diabetic shock? An epileptic who you have not seen seizure? Perhaps for the many migraine sufferers out there, it doesn't show... but that does not make the pain any less. So why don't these people go around showing signs of their medical conditions throughout their day? Most people try to stay on top of there medical condition through heading the adviceof experts, medicine, avoiding public if the symptoms seem to be increasing, or trying to keep it together long enough to get through a public encounter...

It is no different with a mental disorder. Julia's day is full of coping, soothing, confidence building tools from experts so that when she does go out in society she can hold it together. Some times it works, sometimes it doesn't. The days she does hold it together a toll is taken on her already fragile state. Once she is in the safety of her home Jules usually lets down her guard, which makes it hard sometimes, but understanding is the first step to helping.

Learning to see beyond what my eyes could see in Julia has helped me understand her heart, her ambition, and who she is in ways I would have missed if I stuck to my own ignorance.

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 :)