8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: July 2011

Sunday, July 31, 2011

2011 Camp Barnabas and Vacation - SUCCESS!!! - Part 2

After we arrived to the area where the kids were announced to all the volunteers and counselors, the kids were taken to their cabins while Tony and I went to the Well House, their medical center, to drop off their medications.  After that we were taken to their cabins to say goodbye.  We went to Cassidy's cabin first and met her counselor, Karly.  They already had her bags unpacked and her sleeping bag on her bunk.  She was already busy taking pictures!  She was so excited and quickly said goodbye so she could go back to taking more pictures.

Then we headed to Caleb's cabin.  There we met Robbie and noticed his face - he had two bandaids on and a scratch on his nose - all courtesy of Caleb and we hadn't even left the camp!  Robbie was very understanding and said that they were going to have a good week!  Caleb was in the cabin playing basketball with an indoor basketball hoop and nerf ball.  He got upset, but we were able to leave - very worried about how the week was going to go.  Our process guide walked us back to where we parked.  While we were walking she told us not to worry, that the first day is always very difficult and they have a lot of kids that act out.  I asked if we could call and get information and she told us yes, that if we call in the morning they would check with the counselor at lunch and call us back later in the day.

I am very proud to say that we NEVER called to check.  We knew that if things got too difficult that they would call us.  There were times I thought about calling, but I didn't.  I knew they were being taken care of and kept telling myself the old adage of no news is GOOD news!  It was so true!!!!!

After we loaded up, we drove away from Camp Barnabas and headed to Table Rock Landing in Holiday Island, Arkansas.  It took us about an hour to get there through the windy mountain roads.  We got checked in and the van unloaded and headed into Eureka Springs for a quick dinner.  It had been a long day in the car and we were tired and just wanted something quick and ended up at McDonald's.  We then ran to the grocery store to get some food, drinks and milk.

Here are some pictures of the view from our condo:

View from our deck.

Deck View

Deck View

View from Loft Bedroom

Loft View
Sunday we ran to Wal-Mart and had lunch in Berryville, Arkansas and spent the day relaxing at the condo.  We really wanted this vacation to be a time of relaxation, which I can say it totally was.

Steven was extremely fussy during the week and didn't sleep well, even though we tried to keep the changes to his sleep scheduled to a bare minimum, which can be explained by a couple of things.  One, he missed his brother and sister.  Or, two, he doesn't do well with changes to his routine!  I have tried very hard this summer to keep Steven's nap schedule and bedtime schedule pretty much the same, but due to the older kids camp schedules, it wasn't always possible.  I was hoping this week that we'd be able to keep his nap schedule the same, but it didn't work out that way due to Steven himself not wanting to sleep.  He had a hard time sleeping in the crib that was provided by the resort.  Many nights he was still up and refusing to go to sleep at 10 p.m. and he's normally in bed and asleep by 7:30 at home!  Since we were also at a higher elevation, I'm thinking that his ears may have been bothering him, especially since he was very fussy in the car whenever we were driving through the mountains.  Poor little guy!  He's not really been acting sick or even pulling on his ears, but I'll be anxious to see what the doctor says about his ears when we go for his Kan Be Healthy on the 2nd.

Monday we drove to Harrison, Arkansas and met with a dear friend and her husband and son for lunch.  I met Kathy through the online support group that Child and Adolescent Bipolar Foundation has for families who children have received a bipolar diagnosis.  Because that was Caleb's initial diagnosis, I joined and received so much support, especially from Kathy.  Kathy and I had been communicating through e-mails for a couple of years, so it was very nice to spend some time meeting in person!  I just wish it could have been longer than just lunch.

After we left lunch, we went to Wal-Mart there in Harrison and was able to find a charger for Tony's camera, since we forgot to bring his with us.  I also forgot to buy diapers when we went to the Wal-Mart in Berryville!  I always stress about forgetting things when we go on vacation and Tony always tells me that we're not going to spend a week in Turkey!  For some reason the Wal-Mart in Berryville didn't have the charger, but luckily we were able to find one in Harrison.  During the drive to and from Harrison, I kept thinking that the view reminded me of our numerous drives from Raleigh to Parkersburg, West Virginia when we would go through the Blue Ridge Parkway in Northern North Carolina and through Virginia.  It was so different than flat old Kansas!!!  Tony loved the winding, tree lined roads!

That's it for now.  Stay tuned for more soon ...

Saturday, July 30, 2011

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 ...


Thursday, July 21, 2011

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!!!!

Tuesday, July 19, 2011

Foster Care License CLOSED!

With the adoption of Steven FINALLY making progress - we signed the Adoptive Placement Agreement, which no longer considers him our foster child, but a child placed for the purpose of adoption - we signed the necessary form to request that our license be closed and sent the hard copy of our license to our foster care worker to be returned to KDHE.

It was bittersweet to sign that paper.  I pray constantly that we made a difference in the lives of the children that were in our home!!!

I'm thankful that things are finally progressing with Steven's adoption.  I learned today that the Consent packet should be sent to the SRS attorney sometime this week, which means our attorney should receive the Consent and attorney packet sometime in August.  At that point he would be able to prepare the necessary Petition and get us a court date for FINALIZATION!  For now, I'm just enjoying the fact that we are on the very near end of this process.

Steven's worker will still have to come monthly to have his worker/child visit, but with the closing of our license, we have eliminated our monthly foster care worker home visits.  While they really weren't that big of a deal, it was just another person we had coming into the house.  We're really trying to scale back our lives.  Between Caleb's workers, the Rainbows workers for Steven, all of the therapy and doctor's appointments, even having one less visit a month is going to make a difference.

I took Steven to his physical therapist appointment this morning.  She got approval from his developmental pediatrician to go ahead and order braces for him.  He loves to stand on his toes.  He has gotten better, but with him going to be 18 months old on the 30th and the fact that he is not walking yet, she felt that it was time to take that step.  We've been talking about it off and on for six months.  But now, it's time!  Besides, with having the Adoptive Placement Agreement signed, we were able to put Steven on our insurance, which should pay for the braces.

Tuesday, July 12, 2011

It's the Little Things that Get Me

When Caleb was three years old and originally received the diagnosis of Bipolar Disorder, Tony and I had a lot of processing of information to do.  We spent a lot of time thinking and talking about Caleb's future and what that might hold.  Everyone talks about a grief process that parents go through when they receive a diagnosis regarding their child, especially when it is something that is going to affect them for the rest of their lives.  We were hopeful, though, that with the early intervention services and the medication at such an early age, Caleb would be able to fully function as as an adult, even possibly going to college and holding a job.

Then after Caleb turned five and more and more Autism spectrum symptoms started emerging and then beginning to watch him struggle with previously mastered skills, we began searching for more answers.  We found those answers by having an extensive neuropsychological evaluation performed, which was detailed in  this post and he was given the diagnosis of  Childhood Disintegrative Disorder, the grieving process started all over again.  Our thoughts of Caleb attending college and even living on his own someday were shot down.

Now, I pray constantly that God - the only One who can heal our dear Caleb - that He would heal him or that at a minimum, He would reveal to all of our doctors what to do to help him.  But until that happens, we continue to try and help Caleb as best we can.

I watched Caleb try and put a puzzle together the other day.  It was a 24-piece puzzle, that stated the age was 3+.  Watching my 9-year-old struggle putting that puzzle together absolutely broke my heart.  Caleb wants so badly to have toys that are age appropriate, like Transformers, but he just can't manage to make them work without breaking them.  Caleb had received a gift card from his birthmom for his birthday and bought a Transformer with it, but I didn't realize when we bought it that it was a non-transforming Transformer.  A HUGE bad mom moment on my part!  I should have looked closer at the package.

Caleb has consistently been asking for a "Bumblebee" Transformer, one that transforms into a car.  We have had struggles with Caleb going to our respite organization lately for some reason.  We're not exactly sure why he's been so aggressive there.  We told him if he went to ROCKO and had a good day, we'd get him a prize of the "Bumblebee" Transformer.

We went ahead and bought the transformer, hoping that we'd be able to give Caleb the prize!  He had a good day and earned his prize.  Not even two hours after Caleb started playing with it, he had already broken it.  UGGGGGHHHHHH!!!!!  It just shows me how far behind developmentally Caleb is and it breaks my heart.

Saturday, July 2, 2011

Bad Start to July

So the month of July has not started off on a very good note.

Yesterday we were at Caleb's last Lose the Training Wheels camp.  After getting through the program, the award ceremony, it was about 5:05 and we were loading up everyone in the car.  I started backing out and Caleb wanted me to read his trophy.  I ignored him and he kept asking.  I got distracted for the slightest minute and ran into the back of a parked van.  I am so mad that I let myself get distracted.  Tony went in and found the owner and we exchanged information.  I then had to run and pick us up dinner because Cassidy had her play from the drama camp that she attended this week at 7.

We come home and get everyone to bed and realize the temperature in the house keeps rising, even though we can hear the air conditioner running, which was very frustrating since our air stopped working right before the Memorial Day long weekend as well.  We check the vents and it's blowing warm air.  We check everything and try turning it off, thinking it was overworked, since it's been well over 100 degrees.  Well, that didn't work.  Tony woke me up about 2:45 and told me to go ahead and call our warranty company to get a service request started.  I called them and told them about Caleb's CDD and seizures as well as his and Tony's asthma and Little Guy being so young and they put the service request in as an emergency so that once a company accepted the request as an emergency they would have to come to the house on Saturday.  Fortunately, the repairman was here before 9:30 and got it fixed.

This morning when Cassidy got up she told me her nose hurt because she fell in the bouncy house at drama camp yesterday.  It was swollen and had a bump, so Tony and I talked and we decided I'd take her in to have an x-ray taken.  Unfortunately, the doctor on duty was the doctor that I don't care for!  Fortunately, her nose is not broken.

We came home to a nice cool house.  We had arranged that Cassidy could go to her foster mom's house in case we needed to go to a hotel due to the air conditioning issue.  Even with the air conditioning fixed, she still wanted to go.  So I got her ready and left the house.  It should have taken me an hour to drive there, drop her off and get back home.  I was going to stop and pick up a couple things at Target on the way back.  Lo and behold, the weekend consisted of another accident.  This one, NOT my fault.  The unfortunate part was that I had taken our other van instead of the one that got wrecked last night.  I got off the interstate and was stopped at a light.  The light changed and as the traffic in front of me started to move, I felt the impact.  I had been rear-ended.  Apparently, someone hit the car behind me with such force that it was forced into me.  Luckily, there was not a lot of damage, but nonetheless, it's not something that I wanted to have to deal with!  The car that did the hitting was going to be cited and it sounds like the car that was behind me had expired insurance.  Oh the joy of car accidents!  NOT!!!!!!!!!!!!!!

I ended up taking Little Guy to the ER and having myself checked out as well.  The doctor thinks my back is just sprained, but that I'll be sorer tomorrow and to just take Motrin or Tylenol.  I didn't think there was anything wrong with Little Guy because he didn't even cry, but with him still being in state custody, I didn't want any issues to come up if we decided not to have him checked.  The old adage of better to be safe than sorry played out today!!!! The doctor didn't find anything that concerned him with Little Guy and didn't even see any bruises from the straps of his car seat!  I am very thankful for that.

I can only hope and pray that nothing more happens this month.  We go on vacation in three weeks and there is so much to do to get ready for that trip!!!!

I am so thankful for my hubby and how supportive he's been this weekend.  Not once has he gotten upset about everything that has happened!  I love you, Tony!