National Adoption Month - Open Adoption Blogger Interview Project - Meet Susan

Every November is considered National Adoption Month.  It is a time to bring awareness to the growing number of children that are awaiting adoption as well as to celebrate the families who have been created by the loving act of adoption.

Each of our three adoptions, just like our children, were very, VERY different.  The big difference between Caleb's adoption and Cassidy and Steven's adoption is that we actually met and have contact -- albeit very limited contact -- with Caleb's birthmother, which is considered an open adoption.  Caleb's birthmother chose Tony and I to be Caleb's parents, unlike the State being involved in Cassidy and Steven's adoptions.

This year as I was looking around the vast Internet I learned about the Open Adoption Blogger Network.  I was intrigued and signed up.  I then received an e-mail to see if I was interested in participating in an interview project as a part of National Adoption Month, where I would be paired up with another open adoption blogger and we would interview each other and share our interviews on our blogs.  I was very interested and signed up.  The individuals that were spearheading the project were going to have individuals post on three different dates throughout the month and I knew with the way my life went that the later in the month for me was the best!

So, with that introduction, I am pleased to bring you, what I hope to be, my first of many interviews for years to come as part of the Open Adoption Blogger Network.

 

So, I would like to introduce you to Susan.  Susan and her husband Mitch, are currently in the waiting stage of adoption.  Susan did a great job of keeping the dialog going to make sure we met the deadlines to get our interview completed on time.

When I received the first e-mail from Susan, I had an idea, even though that we lived in different areas of the country and had never met before, that she and her husband might be using the same adoption agency that we used when we adopted Caleb.  I wrote Susan back, asked her and, sure enough, they were using the same agency.  What are the odds?!?!??!

Well, let's get on to learning more about Susan.

I know by reading through your blog that you have chosen the Independent Adoption Center (IAC), which so happens to be the agency that my husband and I used when we adopted our oldest, and they are an open adoption agency. Did you consider any other adoption agencies? Any other type of adoptions, i.e., foster care, international? 

We told ourselves we were going to learn everything we could about different types of adoption before we embarked on our journey, but there’s a lot to consider. It was hard for us to take it all in and explore all our options as fully as we would have liked. We relied a lot on the experiences of others when making our decision to move forward with IAC back in the summer of 2010. Before making that decision we did briefly consider both foster care and international adoption, but we were really drawn to the benefits of open adoption, particularly to the child. We looked at a few agencies and ultimately selected IAC because of two very strong recommendations from people we knew who worked with them. In the last few years, we’ve really come to see the limitations of relying on other people’s experiences. After all, everyone is different and you’re never going to have the same experience as someone else. Your experience might be similar, but it’s still going to vary because you’re not the same people with the same circumstances.

What have you done to pass the time while you are waiting for “the call”?

Life goes on while you’re waiting. We’ve been waiting 31+ months and are finding that the longer you wait, the more life goes on, with or without you. You can choose to be part of life or not, but it happens all around you even if you choose not. So we do our best to keep focused ourselves focused on the bigger picture. We’ve heard that adoption will happen for us if we wait long enough, but in the meantime we’ve been pouring ourselves into the lives that we are living now and pursuing our goals. We work hard and find time to play hard too. One of the best ways we find to distract ourselves is with our annual passes to Disneyland which is only 15 minutes away from where we live. We also love day trips out, visits to museums, zoos, and other local attractions, and pursuing interests such as reading and craft projects. I’ve also found it particularly helpful to stay engaged with our local bead store. They offer numerous classes every month and it’s so much fun to try new beading techniques and hang out with people there.

How supportive is your extended family with your adoption decision? 

Everyone is on board with the idea of us adopting. We’ve found that many people aren’t aware of the intricacies and complications with adoption, and that includes many family members and friends. So while everyone is generally supportive, it’s hard for some to really understand what we’re going through or why it’s taking so long. That said, we know they’re here for us even if they’re a little fuzzy on the details.

Are there any adoption blogs or websites that you are following? 

 My husband and I both regularly follow America Adopts, both on their Facebook page and blog. We were drawn to them early in our journey, both because of the great advice they often have for those waiting to adopt and because they write regularly about a variety of perspectives and topics related to adoption. I also follow “He’s Our Heart, She’s Our Hero” which is the blog written by my interview partner from 2012. While her wait to adopt ended almost 2 years ago, her story has some parallels with my own. I find her perspective very inspiring and I find it helpful to hear her stories about life now that the adoption is finalized.

What adoption books have you read that helped you the most? 

This year I read "Instant Mom" by Nia Vardalos, who is probably best known for her role in the movie, "My Big Fat Greek Wedding." Her book is about her long and very rocky journey to become a mother, which finally happened by adopting through the foster care system. She tells her story with wit and candor and it includes stories about her career and her struggles to become a mother. I found it very engaging and easy to read, and also found there was a lot of good information about adoption in the midst of her story. I learned several things I didn’t know about the foster care system and my husband and I have started to reconsider our path as a result. I also liked that Ms. Vardalos is committed to adoption advocacy and donates proceeds from the book to charities.

"Instant Mom" really stands out for us because my husband and I also had the opportunity to hear Ms. Vardalos speak twice about her book and her adoption journey. The first time was in April 2013 at the "Los Angeles Times" Festival Books. It was right after her book came out and I hadn’t read it yet, but I knew I wanted to hear her talk about her book. We bought a copy and she was so sweet to us when we she signed it. We heard her speak again at a local library in October 2013, and this experience was even better because I had just finished reading her book. We stood in the book signing line just to thank her for the book and tell her how much I liked it. We weren’t expecting her to sign our copy since it was already signed. We were very impressed that she was so sweet to us again and happily surprised when she volunteered to sign our book a second time.

 I saw from your blog that you were working on a cross stitch project, I’m assuming for your nursery. Have you completed that project?

I have not. This year has been very difficult in many ways, including a death in the family and a failed match. A bit got done in the glow of matching with a pregnant woman in early June. Unfortunately my enthusiasm for the project faltered when the match failed and we went back to continuing our wait. Sometimes I find that I have time to work on the project, but find it very difficult to settle down and actually stitch. I wind up getting involved with other things and the project continues to go unfinished.

I know while we were in our long waiting period for our oldest, we received some insensitive comments from well-meaning individuals. How do you handle those?

We’ve been fortunate in that we received very few insensitive comments. There are a few that have come close, but these are usually in relation to the time it is taking or the method we’ve chosen to adopt. We often hear, “Why aren’t you adopting a particular way, such as internationally? Someone we know did this and they adopted right away.” It’s clear that the people making these comments want us to become parents as soon as possible, but they don’t realize how invested we already are with the path we’re on. Our response varies depending on our connection to the person making the comment. In some cases, we’ll just respond that their idea is something to consider and we’ll leave it at that. In other cases, we’ll take some time to explain why that might an idea for the future, but not possible now.

There is a source of painful comments that I’d like to share. I have a very dear friend who is in her 80s and lives in London. She’s been like a grandmother to me and we talk on the phone every week. She’s a lovely person and has been extremely supportive of our plans to adopt, but she’s never really understood how adoption works in the 21st century. In the last year, things have become more complicated because she has developed dementia. She often asks about our son or daughter, forgetting that we haven’t actually adopted yet. And unfortunately I made this even harder when we matched over the summer and I shared our good news. Almost every week now I find myself explaining once again that our match failed and I don’t have a child, when she asks how my daughter is. I know she loves us very much and she doesn’t mean to hurt me when she asks, but I’ve learned I need to be much more careful when sharing information with her about our adoption plans.

You can read more about Susan and Mitch on her blog here.  I would like to ask my friends to please pray for Susan and Mitch and that God would bless this couple with a bundle of joy!!!!

If you would like to read Susan's interview of me, you can go to her blog and read it there.

You can learn more about the Open Adoption Blogger Network and the Interview Project here.

And if you go here you will find third and final installment of interviews in the Open Adoption Blogger Network Interview Project of 2013.

If you want to read more, here is the second installment.

And the first installment is here.

Long Time No Blog Post

Well, once again it has been a very long time since I have come and blogged.  To say life has been crazy would be a total understatement!

It all started with Steven and I getting sick.  We both had sinus infections.  Thankfully it only took Steven one round of antibiotics to get rid of his.  Mine, on the other hand, took three rounds of antibiotics to get rid of and still have a slight cough that appears to be hanging around and I'm ready for it to take a hike!

Then, two weeks ago, I fell down our stairs with my left arm straight out behind me.  I was on either the second or third step from the top, so ended up going down about 13 or 14 steps.  I'm very thankful that I wasn't carrying Steven when it happened and that I wasn't more seriously hurt.  I ended up going to the ER where they took x-rays and determined my shoulder wasn't broken.  The doctor thought it might have been my rotator cuff, but when I went to the orthopedic clinic, they thought there was a slight tear in the bicep and that by resting it and not lifting (yeah right - I have a 2 year old!) that it should heal on its own.  I am to take an anti-inflammatory every day for two weeks and see how it's doing.

Three weeks ago, Steven and Caleb both started hippotherapy.  This is Caleb's third session of hippotherapy and he is doing really well.  He enjoys his time on the horse and we are so thankful for this organization.  Steven wasn't too happy during his evaluation and screamed the entire time, so we weren't sure how he would do the first session.  The only time he cried the first session was when we put his helmet on (he does not like anything on his head) and then when Luke (the horse) stopped moving.  But I'm happy to report, today, which is actually only his third session, and after a two week break due to Spring break last week, Steven did absolutely WONDERFUL!  He didn't even cry when Ms. Heather put his helmet on.  He did try to get off the horse a couple of times by reaching for me, but we were able to keep him up there and finish the session.  He loved it when Luke trotted.  It made this Mommy's heart swell to see the HUGE grin on his face!!!!

Things with Cassidy have been much more difficult.  I will post on that on my other blog soon.

Last week was Spring break and Caleb spent the week at the Arc of Sedgwick County's Spring Break Break.  The Arc is an organization for individuals with intellectual disabilities and it is WONDERFUL!  I am so thankful for their programs.  Even though they had four days of rain, the kids all appear to have had a wonderful time.  Caleb even asked me when I picked him up on Friday when he could go back.  I told him, "May!"  The Arc has a wonderful summer program, called YESS Camp, which provides educational and community activities for the kids.

Cassidy spent last week at our community rec center and the Spring Break Fun Factory that they had.  She had a lot of fun as well.  We have found that the kids do much better being kept busy during their down time during school breaks.  

We had contacted the adoption agency about adopting again; however, it appears that God is giving us a HUGE no on that one!  So we are not pursuing that right now.

March has also brought some big changes to Tony and his position with the government.  He has been temporarily assigned  as the Assistant Director and I couldn't be more prouder of him.  He is doing a wonderful job!!!

The other big news is that we have started a Non-Profit to help other families with children with additional needs to know that they are not alone, that there are services out there to help them and that there is HOPE to get through.  The name of our company is PARENTS' HOPE NETWORK.  So in addition to all of the kids' appointments and everything else, I'll be pretty busy getting things up and running for the non-profit!  Exciting times!!!!

Now, my next big project is figuring out Caleb's summer schedule based on his YESS Camp and his in-support hours and figuring out what activities Cassidy is going to do the month of July and the first couple of weeks of August before school starts, as she's got plans for the entire month of June!

Hopefully it won't take me over three weeks to come back here and update what's going on.

Neuropsych Testing

Today I took Cassidy for her second and final day of neuropsych testing.  We turned in all of the documents that doctor wanted us and her teacher to fill out so that he could write his report, which we will go get on February 7th.

He did give me some "first thoughts" after the first session on Tuesday.  So we'll see if he was "spot on" just like with Caleb two years ago or if his testing takes him in another direction.

Back in September we had a horrible experience trying to get Cassidy to do some homework and had one of our worst meltdowns with her.  I ended up videotaping it.  I'm so glad I did, because we were able to give it to the doctor to review to help him!

Praying for answers and guidance!

Merry Christmas (a little late, I know) and Happy New Year

Dear Friends and Family,

Yes, I am just now starting to work on our Christmas letter, which is going to end up being a Happy New Year letter at the rate I’ve been going!

We have so much to be thankful for in 2011.  Everyone has been healthy, which is a huge blessing, seeing as how we had two children in the hospital two different times last year!  It’s never fun when your children are in the hospital.

2011 has been a year of challenges and excitement.

Tony continues to work for the government and is constantly getting new duties added to his job description.  He also continues to do some adjunct faculty teaching.

I continue to stay home and take care of Tony and the kids.  I manage the kids’ services and run them to all their doctor’s appointments and therapies.  I had more than 220 doctors and therapy appointments for the kids last year!  So to say I’m constantly on the go would be an understatement!

Caleb is now nine years old and in the fourth grade and continues to puzzle Tony and I, his teachers and the doctors.  While he doesn’t seem to be drastically regressing like we’ve seen in the past, he has been exhibiting problems with his short-term memory, to which the doctors are puzzled.  His teacher expresses concerns about his lack of focus, but no one really knows what to do about that issue.  Caleb continues to receive his in-home support through the State of Kansas, for which we are very thankful!  It is a huge help to us to have someone be able to come in and spend about three hours with him in the evening.

Cassidy is now eight years old and in the third grade.  She is a puzzle as well, only from the fact that she likes to defy all authority and thinks that rules do not apply to her!  But she’s a huge help when she wants to be!

In July, Caleb and Cassidy spent a week at sleep away camp.  It’s a camp for special needs children and both kids had one-on-one counselors.  It was a much needed vacation for Tony and I as we were able to go with Steven to Eureka Springs, Arkansas and do a lot of relaxing!  When you have special needs children, it’s hard to get a break.  We love Camp Barnabas and the kids are already signed up to go again in June!

September 8, 2011 - Finalization Day with the Judge

Steven will be 23 months old on the 30^th.  We were very excited when we learned in May that we would be allowed to adopt him, which we were able to finalize on September 8^th.  Last January 1^st, at 11 months old, Steven crawled for the first time after weekly physical therapy.  We were all so excited when he started crawling.  We continued with his physical therapy to work on walking.  Steven’s hard work (as well as the hard work of his psychical therapists!) paid off when he started walking at 20 months!  We now can’t keep him still.

As some of you may not know, Steven was born not breathing due to labor complications.  From what we learned upon his placement with us, the doctors were not sure that he was going to survive.  When it appeared that he was going to survive and was breathing on his own, they did not know what type of developmental delays that he would endure.  We are so grateful to God for the progress that Steven has made!  He is still not talking, but has started signing some words.  We have added speech therapy to his weekly schedule!  I just know that he will continue to do well!!!!

Steven did give us a huge scare this October/November/December.  Because of his medical history, when he started exhibiting some symptoms of muscle weakness we notified his neurologist.  They wanted to see him, but didn’t really see much that they were concerned about at that time and just wanted to monitor him.  About six weeks later he started waking multiple times a night and banging his head on his crib.  We went to the pediatrician who ultimately called his neurologist.  We were then sent back to the neurologist and they ordered that an MRI be done to determine what might be going on.  Some things that they were looking for were tumors or neurodegenerative conditions.  Thankfully, we were pleased to hear that all looked clear!  While he still is exhibiting the muscle weakness and still occasionally banging his head at night, we know that it’s nothing neurological and will just continue with his therapies and do what we have been doing to help him.

So that is a quick review of what’s been going on in the Sines household!  We pray that this letter finds all of you doing well.  We’d love to hear how things are going with you.

Merry Christmas!!!!

2011 Camp Barnabas and Vacation - SUCCESS!!! - Part 1

I have to admit that I was very nervous about dropping the kids off at Camp Barnabas - not so much Cassidy, as I knew she would have a blast and, even though she might miss us, she'd do great.  Caleb on the other hand, I had absolutely no idea how he would do being away from us for six nights and in a camp environment.  I knew that it was something that we had to at least try.

Tony and I have talked many times about family vacations, but Caleb is always the wild card.  We don't know how he will do in given situations and sometimes the stress of trying to avoid meltdowns is just too much for both of us at times.

There was this blog post from a father of a child with a special needs child, who blogs at The Works of God, and in there he expressed in writing many of my same thoughts about taking a vacation without Caleb.  Our difficulty was, we didn't really have anyone that we could leave Caleb with and take a vacation.  That is, until we found Camp Barnabas!

We packed the car and ended up leaving about an hour before we had initially intended.  Everything was packed and ready to go and the kids - especially Caleb - we're getting very antsy.  So instead of waiting around and constantly telling them when we would leave, we just loaded up and went.

 Here is a picture of the van loaded and of all the kids as we were just leaving home!

On our drive, I lost count how many times Caleb asked, "Are we in Missouri?"  He would ask constantly!  Even if he just asked two minutes prior, he'd ask again, "Are we in Missouri?"  That lack of a short term memory sure is a big issue!!!!  

We stopped and had lunch in Parsons, Kansas - where we had to eat at Braums, because the Burger King that we normally eat when we go through Parsons was closed!  The only other fast food restaurants on the road that takes us through town were Subway and Sonic!

We were making very good time and had time to wait either at the entrance to the camp since they do not open the gate until 4 p.m. on the dot.  We were getting close to Joplin, so we took a little side trip and used it as a chance to get gas and have a potty break!  Driving through the main road off the interstate we saw firsthand the devastation of the May 2011 Tornado.  The news reports did not do it justice.  To see the devastation was just mind boggling.

We arrived at Camp Barnabas and had to wait about an hour before the gate opened.  When we arrived, we had to wait about an hour before the gate opened.  Here are some pictures upon arrival.

We have arrived!!!!!!!

Waiting outside the gate:

Entering the gate:

Since we were first time campers, this nice lady was there to walk us through the drop-off process!  The house in the back was done by Extreme Home Makeover for the owners of Camp Barnabas.

Coming up to drop off the luggage!

They announce all the kids as they arrive.  Here Cassidy is being announced.

Tony has most of the drop off pictures on his camera, so I'll have to share those when he gets them processed.

I'll post more about our week in subsequent posts!  Stay tuned ...

Cassandra

Camp Barnabas - Two Days Away

In just two days we will be taking Caleb and Cassidy to Camp Barnabas.  While I am very excited about spending five full days with just Tony and Steven, relaxing and not having to deal with meltdowns and fighting children, I'm also extremely nervous about it.

I am not worried about Cassidy.  I know she's going to have a blast at the sibling portion of the camp.  I'm grateful that Camp Barnabas includes the siblings of kids with special needs.

I'm worried about Caleb.  We have never been away from Caleb for more than two days, except for his hospitalizations - which definitely were not fun times!!!  I'm grateful that he has started asking about when we are going on vacation, because when we first started talking to him about camp, he was adamant that he was NOT going.  Although I don't know that he totally understands that Mommy and Daddy are not staying with him.  I've tried to explain it to him, but not sure that it's actually getting through.

Thankfully Caleb will have a one-on-one counselor, which should help.  I'm hoping that Caleb does well and that we can either have him go to Camp Barnabas again or even to Victory Junction  when it opens in Kansas City.

Please pray for Caleb and his counselor, that they would have a good time together and bond quickly.  And please pray for peace for me and that I would be able to relax and enjoy the time with Tony and Steven.  Tony and I really need this downtime, as the past couple of years have been very hectic without not a lot of time to just relax.   I know those five days are going to go by way too fast!!!!

The Horrible Month of May!

Once again it has been about six weeks since I've come and put anything on this blog.  There's a good reason for that.  The month of May was really bad! 

God has always been very gracious to us and has blessed us in the fact that we never had difficulty with Caleb and Cassidy at the same time.  However, May was not that way.  Both kids had a lot of difficulty and it was very stressful!!!!

The last part of April we started taking Caleb off of his Abilify because things were very difficult with him and it didn't appear that the Abilify was working any more. However, last week, we ended up putting him back on it, not at the same dosage, but still he is back on it.  Putting him back on this medication raises the number to five psychotropic medications and two seizures medications that he takes on a daily basis.  I really hate that he has to be on so many meds, but they are obviously very necessary for him to be able to live at home safely.

Caleb is attending a camp for children with developmental disabilities through our local ARC center this summer for five weeks.  He went for the first time last week and will go back in three weeks.  Normally when Caleb is in a new environment he is pretty good behavior-wise until he gets comfortable.  But last week was a totally different story.  He had a very difficult time the first three days.  The last day he did much better and I was very proud of him. 

Wednesday, I thought we were going to end up having to try and find a hospital that would admit him.  I arrived at the center to pick him up and his group had not arrived yet.  I was in the back where the vehicles would bring the kids and as his van was pulling in I could hear a child screaming and I was certain it was Caleb.  His leader got out and I asked if that was Caleb.  She said it was and that he had been like that pretty much all day.  She said he'd be fine and then the next minute he'd be screaming, would hit, pinch and scratch.  One of the male leaders had to carry him to the van for me because he was refusing to go with me.  He calmed down enough for me to drive, but he'd start hitting the window from time to time.  I debated in my mind whether to go to our crisis center or not.  I ended up not going and got home, but Caleb refused to go inside.

I got everyone else in the house and Caleb still refused to come in.  I ended up restraining him on the front lawn until he calmed down.  He had a good evening after that.  The next morning after I dropped him off at camp and was driving home, it was like I got hit in the face, realizing that we had taken him off of the Abilify and wondered if that could be the cause of all of this.

I called Tony and talked to him and he thought it was quite possible.  I called Caleb's psychiatrist's nurse (soooo thankful for his doctor and her nurse!!!!) and left a very long and desperate message.  She called me back within an hour and told me that Caleb's doctor was on vacation.  She told me she'd talk to one of the other doctors, but didn't think it would be a problem to put him back on it, especially seeing as how we had a med check appointment already scheduled for the next Thursday.  A while later she called me back and said the other doctor said it would be fine.

Within a couple of days we were already started seeing a difference in Caleb - so thankful!!!!!!  We went to Caleb's psychiatrist this morning and she agreed that he obviously needs that medication and we'll just leave it at the lower dose since it seems to be working.

On to Cassidy.  She's been much more difficult lately with lying, being totally defiant and disrespectful.  This even carried over into school and she made it very difficult for her teacher.  Her teacher and her para were beside themselves, as was I whenever I got a phone call or an e-mail about her behavior.  No type of punishment and/or removal of privilege seems to work with her.  We have started with a new therapist and I'm hoping that we will be able to turn things around with her in the near future!

Kelly Korner's Blog - Show Us Your Life

I have been following a blog for a while now called Kelly's Korner, which you can find here.  Kelly has been doing some Show Us Your Life posts, which allows people to get different ideas for storage and meals, getting to know other families that may be going through some of the same things they are like with adoption and raising special needs children, which is the topic of this post.

I am mom to three children with special needs.  I'll start with the oldest and go from there!

Caleb, is 9.  We started noticing things with Caleb at the age of 15 months.  He'd be happy one minute and on the floor kicking and screaming the next minute, with no apparent cause.  Things continued to worsen to the point where at the age of 2, Caleb would only sleep about 6 hours a day.  He started having 30 to 45 minutes meltdowns where he would bang his head either on the wall or the floor and there was no helping him.  We were helpless watching him, because if we tried to intervene it would make things much worse.  We had to make sure he was safe and couldn't or wasn't hurting himself and be there at the end when he was ready to be consoled.

Caleb also demonstrated a lot of OCD tendencies where everything had to be lined up just the right way, he had to do things the same way and if we did something out of the ordinary, different than what he wanted - even if we didn't know what it was - it would lead to a meltdown.  We were building a house during this time and if we didn't say "goodbye" to the garage, it would lead to a meltdown.

We were desperate for answers and saw a psychologist and a psychiatrist when he was two.  We knew that Caleb's birthmother had a diagnosis of Bipolar disorder when we adopted him, but we had no idea that it was something that young children could experience.

Things continued to get worse and we saw a different psychologist and she referred us to a neurologist.  After this appointment, we had a diagnosis.  We spent two hours with him, going over the limited medical history that we had from Caleb's birthmother, describing what we had been experiencing with Caleb, Caleb was given a diagnosis of Bipolar Disorder, Anxiety Disorder and Obsessive Compulsive Disorder.  We were in absolute shock and not sure what we were in for.

After numerous medical tests we started Caleb on medication.  This helped immensely.  Caleb did really went until right after he turned five.  One week later he was admitted to the psychiatric hospital for the first time.  It was the most difficult decision that we had to make, but it was also the best decision that we made.  Fortunately, at that time, the hospital was 30 minutes from our home, but they also allowed the parents of the younger children to be up there the entire time.  I stayed with him the first night, but didn't get much sleep that night.  My husband came up the next day and we were there all day long, waiting to talk to the doctor on staff and see what his plans were.  They ended up doing a lot of tests and changed his medication.  I ended up going home that night and every night during the rest of his stay so that I could get some sleep.  It was very hard to leave my baby, but I knew it was important for me to get rest.  We were there as much as we could be and made sure we talked to the doctor every day.

After Caleb was discharged, and in the time we were having our regular med check appointments with his psychiatrist, we started seeing more and more Autism-type symptoms appearing.  After a period of time, his psychiatrist gave Caleb a diagnosis of Aspergers.  During this time we did numerous med changes as Caleb grew.  

As Caleb was preparing to graduate from the special needs preschool and start his kindergarten year, he needed to have extensive testing at the school as part of his IEP.  At that time his IQ tested at 100. Shortly after starting kindergarten and more and more of the Asperger symptoms started appearing, we went to a local Autism clinic and had some additional testing done.  That testing showed that Caleb's IQ had dropped to 79.  We thought it was due to the fact that the doctor that we were seeing did not relate well to Caleb; however, we would learn that was not the case.

In May of 2009, after a stay in the hospital with Caleb hooked up to a continual EEG (which you can read about here) we learned that Caleb was suffering from Complex Partial Seizures and stopped one medication that he was on, which was actually an anti-seizure med used as a mood stabilizer, because of liver toxicity and put him on a different seizure med.

Things with Caleb were never normal.  He never crawled, he walked early, even with numerous ear infections, he was very smart and doing very well.  Then we noticed he wasn't able to do things that he had previously been able to do.  Then things started getting really bad the end of September 2009, to the point that October 7th we had to make the hard decision once again to hospitalize him in a psychiatric hospital.  This time the hospital was 2.5 hours from our home and it was horrible because we could not stay up there with him and they only had visiting hours two hours during the week and three hours on the weekend.  Caleb went in on Wednesday night and was discharged on Monday.  We learned that they had cut one of Caleb's meds in half and said that because he wasn't showing any aggression there that he needed to be discharged and follow up with our local doctors.  They also believed that Caleb's issues could be his seizures and we needed to follow up with his neurologist.  We had an appointment scheduled with his neurologist on Wednesday morning - thankfully!

The day after Caleb came home we ended up in the emergency room trying to get him readmitted.  He actually needed to be transported by ambulance because he was so out of control at our daughter's therapist office that she refused to let us leave with him in our personal vehicle.  She ended up calling 911 and we went to the hospital.  You can read about all that happened during that time here.  It was a very scary and difficult time.

After that hospitalization we got a lot more extensive testing, which you can read about here.  The result of that testing and evaluation was that Caleb was given the diagnosis of Childhood Disintegrative Disorder, which is a very rare form of Autism.  We have been doing a lot of genetics testing to determine if there is a medical cause; however, everything has come back negative.  We do not know how much more Caleb will regress or even when it will stop. 

Now, on to our daughter, Cassidy.  Cassidy is 7 and she was placed with us for adoption two weeks shy of her second birthday.  Cassidy has been diagnosed with Oppositional Defiant Disorder.  She has difficulty telling the truth, she refuses to do what she is told to do and is very disrespectful.  We have spent lots of time in therapy with her and are praying that someday it will click with her so that she doesn't go down the wrong path in life. 

Tony and I have talked a lot about nature versus nurture and Cassidy's issues have definitely shown us that there are times that nurture just does not outweigh nature.  It is very frustrating when you catch Cassidy do something that she is not supposed to be doing, call her on it and she completely denies it.  Cassidy also suffers from severe ADHD; however, we have not been able to treat her ADHD with medication.  The first ADHD medication we tried her on ended with her being admitted to the psychiatric hospital for the first time. 

Now, for our third child, Steven.  Steven is currently our foster son, but we are very close to being able to sign our Adoption Placement Agreement.  Steven is 16 months old and is such a joy.  When we were placed with Steven, he was being discharged from the hospital after a 10 day NICU stay because he was born via an emergency c-section and he was not breathing.  The doctor's weren't sure the first couple of days that he was going to survive.  Survive he did!!  He is a little fighter.  We have seen a developmental pediatrician and a pediatric neurologist for him.  The developmental pediatrician keeps telling that she may eventually give him a cerebral palsy diagnosis, but she's holding off until he is a little older.

Steven's developmental skills are delayed, but he is gaining skills every day.  We have been receiving early child intervention services, as well as weekly physical therapy.  He finally started crawling at 11 months old and is finally cruising.  Right now he refuses to let go of anything when he is standing and if he does, his legs just aren't quite capable of holding him up and he goes straight down.  We will keep working with Steven and his entire early intervention team to help him and do whatever is necessary for him.

We know that God has placed all of these children with us for a reason.  We are doing whatever we can to help all of our kids.  I would totally be lying if I said we had it all together.  Some days are very, VERY hard!  There are some days that it is so hard that I'm not sure how we're going to make it!  But, the one thing is for certain, we continue to do it with the Lord's help!

Med Changes, Med Changes and More Med Changes

Approximately six weeks ago when I took Cassidy to her psychiatrist med check appointment, things had been really difficult with her.  It was to the point that we were thinking she needed case management again.  It's hard to tell if it is just due to her diagnosis or if it's because of all the attention that Caleb gets having two in-home support workers five nights a week.  I explained to the doctor what we've been seeing at home and talked about our thought about case management.  She told us if it affected her at school she would probably qualify.

After discussing further what was going on and her current medication, the doctor said she'd like to take her off of the current med and switch her to a different med.  We were familiar with the med becuase it was something Caleb had been on since just before he turned four.  So it was decided that we would titrate down the one med and titrate up the other. 

I made an appointment to discuss seeing if she qualified for case management services again.  While she does not qualify for a Severe Emotional Disturbance waiver through the state, she does qualify for case management and attendant care.  The fact that she doesn't qualify for the waiver is not a big deal for us becuase she already has a State medical card which is what pays for these type of services due to her being adopted through the foster care system.

The last couple of weeks with Cassidy have been very, VERY difficult.  She's completely defiant and disrespectful at home and school, throwing fits at home and just out and out difficult.  It's been a very long couple of weeks and that's putting it mildly.

I took Cassidy to the psychiatrist on Friday and we ended up having to have her case manager called out of a meeting to help me in the lobby while we waited for her appointment.  She refused to sit in the chair and then all of a sudden freaked out because she was going to miss snack at school.  She was getting loud yelling that she didn't want to be there, that she wanted a snack, flapping her arms and hitting me.  I tired to calm her down, but nothing worked.  So one of the staff came out and asked if we needed anything and I told her to see if her case manager was there.

The case manager comes in and after talking for a few minutes say, "I'll go get you a snack."  Thanks! 

When the doctor came out and was ready for us, we were still in the hallway trying to get Cassidy to calm down.  We went back towards her office and stopped at the scale.  Cassidy refused to get weighed.  Finally we got her to cooperate.  Then we went into the office and more difficulty.  Refusing to talk about how she's been doing, disrespectful and defiant.  At least the doctor was able to see!

I explained the difficulties at home and at school - especially the fact that she's been permanently removed from the quad of desks due to her constantly wanting to talk and disrupt her classmates from doing their work.  The doctor said that the previous change was obviously not a good one and we'll start taking her off of that and adding a new medicaiton very slowly.  I am hoping that is the answer!

When we talked with Caleb's neurologist last week he had mentioned increasing one of his seizure meds due to his lab levels being lower than last time.  It took until Friday (or so I thought) for his staff to call in the change in the Lamictal, which was the only medication that I thought he was increasing into the pharmacy.  When we got the Lamictal, I was curious how much our insurance had paid becuase the retail value of his prescription was over $800.  EEEEKKKKK!!!!  (I am so thankful for good insurance and the medical card!!!)  I noticed that there was a prescription charge for a pharmacy that we don't use and haven't used for quite a number of years.  I remembered seeing on the caller ID a call from the store a few days earlier and called them back to see if they had a prescription for Caleb.  Sure enough, the doctor's staff had called it into this other pharmacy.  When they answered the phone they said the location, but I didn't recognize where it was at.  So I asked where they were located.  They were located in Andover, which is a 30-40 minute drive from where we live.  They said they could transfer it to the store by our house.

I went and picked up the prescription this morning and had difficulty, which made me sure that I would not be moving our prescriptions back there any time soon!

I really should have gone to school to become a pharmacist with all of these medications and med changes that we go through on a regular basis!

http://yourlife.usatoday.com/health/medical/autism/story/2011/04/Many-with-autism-also-have-treatment-resistant-epilepsy/46418626/1?sms_ss=facebook&at_xt=4db3985af035099f%2C0

Dynamics

It always amazes me how the dynamics change when one child is not at home.  We've gone through this many times, three times were hospitalizations for the kids, which were chaotic in and of themselves.  But when Cassidy goes to stay with Mama Sherry, her foster mom before we adopted her, things are calmer.

We love Cassidy to death, we are very thankful to God for choosing us to be her forever parents, but sometimes we all just need a break from each other!  The kids started spring break Friday and it was a difficult day with both Cassidy and Caleb.  Cassidy is a very strong-willed child and has been diagnosed with Oppositional Defiant Disorder.  She likes to argue about every task that she is given and has some very serious anger issues.

We are starting to wonder if some things that were done by her bio-mom when she was pregnant with Cassidy aren't leading to these anger issues and have expressed those concerns to the therapist. I think eventually they will get to those, but first things first, they need to build the therapist-patient relationship and they are going to be working on some self-calming techniques.


Cassidy is having a difficult time dealing with the fact that her brother has severe needs and doesn't understand why things are different for him than they are for her.  We have recently started taking her to a new therapist and know that things are not going to get better overnight.  

We're trying to help Cassidy to realize that she needs to let us be the parents to both the boys, but she seems to think that it's her responsibility.  That's going to be a long process as well, I believe!!!

In the meantime, we are trying our best.  I'm very grateful that we have been able to maintain a relationship with Mama Sherry, because I know it's important for Cassidy to have that, since she was such an important part of her life, living with her for 22 months.  It's just hard to hear sometimes when Cassidy comes home and we have to punish her that she wishes she didn't live here or that I'm a mean mom! 

I am taking Cassidy to our community mental health agency on Wednesday for an intake to see if she qualifies for community based services.  Due to the budget issues, I'm not hopeful that that will happen, but we'll see.  She was on it before and came off due to her doing well, which she had been.  We're in the process of a med change so we're not sure if that's going to make a difference in her irritability yet.

It's always something at our house!!!