8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: March 2011

Thursday, March 24, 2011


To watch your child get so upset over something very minor is just heartbreaking!  I sit here heartbroken as I don't know how to help my child when he gets to the "out of control" point of his Autism.  I hate Autism!  I hate Autism!  I HATE AUTISM!!!!!! 

Some days it is so hard! 

We have often described to Caleb's doctors and other people that sometimes it appears that a switch is flipped inside of Caleb when he has one of his episodes.  Until people experience they don't really understand what we're talking about.  Caleb's teacher finally understood after the first big blow up at school and the resource officers had to called to help.  We talked about it later and she said it wasn't that she didn't believe me when I had explained it to her, she just didn't truly get it until she saw it happen.

Caleb has spent today and the last two days at The Arc of Sedgwick County's Spring Break Break. It's a program for kids with developmental disabilities to go while school is out and they have various activities in the community.  Tuesday they went bowling - Caleb's absolute favorite thing to do.  Yesterday they went to the movie and out to lunch.  Today they went swimming.  Tomorrow they are going to the zoo.  Caleb would have gone on Monday, but he had a dentist appointment.  He really surprised me and did very well, even allowing the hygienist to use the power tooth brush to clean his teeth.  (I just never know some days!)  I have been given nothing but good reports this week from the staff at the program.

I should have known when we got in the car and I asked Caleb how swimming went and he was fine and said he had fun.  Then immediately the switch was flipped and he was immediately angry and said, "I hate them.  They wouldn't let me go in the deep water.  I hate them."  Now, mind you, this is a child that HATES water.  It is like World War III trying to get him to take a bath!!!!

Caleb went on to surprise me by eating what I cooked - now he didn't eat a lot, but he didn't have his normal dinner of Cinnamon Toast Crunch and waffles, which has been all that he would eat lately.  Emily, Caleb's worker, arrived tonight and he was in his room.  Tonight was Bible study night, so Emily was going to stay home with Caleb while the rest of us went to church.  Caleb started not listening.  He crawled under the high chair and refused to come out.  I started talking to Emily about Caleb's practice times Special Olympics Track, which starts next Thursday.  Since Emily starts work at 6 on Thursdays, she can meet us at the practice and then I would have time to make it to church for small group and Emily can bring Caleb home after practice.

Caleb and Cassidy started talking about track and Caleb started trying to race in the house.  We tried to get him to stop and he refused.  I'm not really sure what happened next, but Caleb started banging the wall under the kitchen bar with his hand.  I tried to stop him and he got away from me.  He move down to the wall with the ledge along our stairs to the basement and started hitting that wall.  I pulled him over to the couch and restrained him.  It took 45 minutes for him to calm down and agree to go get a bath.  He was extremely itchy and I knew at that time I needed to get the chlorine off of him.

I sent Tony and Cassidy to church and stayed home in case things escalated again.  Right now he's calm and downstairs with Emily watching cartoons.

I HATE AUTISM!!!!!!!!!!!!!!!!!!!!!!!

I have to end this on a happy note, little guy has finally started pulling himself up to a stand.  Today at physical therapy he actually took a couple of cruising steps!  His therapist is thrilled with how he is doing.  I also learned yesterday that there is a tentative Best Interest Staffing date scheduled for April 7th - as long as they get the journal entry for the court!  At that time, if things go the way we expect it to go, we should then be able to start moving through the adoption process for him!

Sunday, March 20, 2011


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!!!

Tuesday, March 15, 2011


I have a lot to be thankful for - my husband and children, our home, my husband has a great job, we are not fighting medical conditions like cancer.  And I am very, VERY thankful for those things!  In light of the devastation of Japan, our problems seem non-significant to what Japan is enduring.

Today, I am very thankful for wonderful ladies that God has brought into my path through the Women's Bible Study program at our church.  The last couple of weeks, I have felt very needy with my prayer requests as a lot has been going on with the kids - Caleb's having to be restrained at school for the first time with actual school police involvement (and a second time - much less severe), Cassidy has been much more oppositional and mouthy lately, and the continuing delays and uncertainties related to the issues surrounding Steven's adoption.  There's been weeks I've gone to Bible study and ended up in tears.  Yet, everyone has just prayed for us and continues to pray for us.  I am very thankful for those prayers and they are being felt.

I'm also thankful for our children's doctors.  I have never felt like our children's doctors have ever felt that the things that we were concerned about were minor things or that we are making things up.  I had forwarded a copy of the restraint form to Caleb's neurologist to let him know what had happened at school, as he had mentioned in the past that if it came to the point that Caleb was not able to be contained at school, he had already started talking to the developmental pediatrician we saw about trying to get Caleb into Heartspring, a school in Wichita for children with Autism.  I received a call from one of the doctor's assistants today asking whether Caleb would need sedation for an EEG.  I told her I didn't know he needed an EEG.  Evidently, Caleb's doctor is concerned enough about the issue at school, that he feels it is necessary to have an EEG done.  Caleb's last EEG was done when he was in the hospital in August.  With as irritable as Caleb has been lately, I told her that I felt that Caleb would need the sedation.  So now I wait to hear when that will be scheduled.

I also received a message last night from Caleb's genetics counselor.  The last time we spoke a few weeks ago, they were still waiting on one test that was done just before Christmas to come back.  She had told me then that if that test came back normal the geneticist already had more tests that he wanted to be done.  Since in her message she said that she was wanting to discuss further testing, I'm taking that to mean that the last test came back normal.  She told me to call her nurse and she could fill me on the tests since she'd be out at a conference the rest of this week.  I'm waiting to hear back on that.

So here I am in waiting mode again, but am thankful that we have great medical professionals on our side working to try and find answers for our Caleb. 

Thank you, Lord, for bringing us to people who care about our kids and are looking for answers and for people who are willing to support us in prayer during the times I struggle.

Sunday, March 6, 2011

A Weekend Away

You hear as young couples that when you start adding children to your family that it's important to make sure you make time for just couple time.  I know my parents did this, including weekends or trips by themselves.  When you have special needs children though, it's that much more difficult to get that couple time.  We're very fortunate to have Parent's Night Out at our church one night a month, 10-months out of the year and a wonderful respite organization, ROCKO, that gives us a much needed respite for approximately four hours a couple times a month.

But when you start thinking about trying to get a weekend away, it becomes much more difficult - especially when you do not have extended family living in the same area as you.  Tony and I are very fortunate (and very grateful) to have a great friend who is willing to help us with this.  This past Friday night Aunt Vickie came to the house and stayed with the kids so that we could get a weekend away for Tony's birthday. 

Tony and I left and drove to Overland Park where we had hotel reservations.  Our plans were to go to the Kansas City Auto Show Saturday and relax.  We got up Saturday morning, had breakfast and headed to the convention center.  I have to say, after many years going with my dad to the Detroit Auto Show, the Kansas City Auto Show was small in comparison.  The most important thing though is that I enjoyed the time with my wonderful hubby.

Looking at the cost of a lot of the cars, especially the "luxury" cars, I kept thinking about how many children that much money could feed!

After we left the auto show we drove to Zona Rosa and went to Lifeway!  I love to go to Lifeway!!!  We bought some CDs and some books.  I started reading, "Life Interrupted," by Priscilla Shirer and I have to say - this is an AWESOME book!!!!!  I hope to share more about this book after I finish it.  I've already read eight chapters!!!  We then left and went to Chick-Fil-A for lunch!!  YUMMMMMY!!!!!

We went and rested back in our room for a while before heading out to Cheesecake Factory for dinner.  I had been wanting to go to Cheesecake Factory for quite a while and it has just never worked out for me.  Tony's been a couple of times and I always gave him a hard time about it.  Now, I can't give him a hard time any more since we went for his birthday dinner.  All I have to say is - WOW!!!  There were so many food choices and just as many choices as to different varieties of cheesecake.  I ended up having the Chicken Di Pana and it was so good and fork tender!  Their mashed potatoes were absolutely wonderful!  Then came time to decide what cheesecake we wanted.  I had such a hard time deciding, but finally ended up deciding on an original cheesecake with strawberries.  Oh. my. goodness!!!  It was soooooo good!!  I left there absolutely stuffed!

We got up early this morning and headed home so that Aunt Vickie could have time to prepare for her work trip tomorrow.  The kids did well while we were gone, for which I'm very grateful.  With our kids you just never know what one day will bring!

Happy birthday, honey!  I hope you enjoyed your birthday weekend away!!!!!!