8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Kelly Korner's Blog - Show Us Your Life

Friday, June 10, 2011

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!

1 comment:

cerebral palsy symptoms said...

This blog is an inspiration to everyone.