8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: June 2011

Tuesday, June 28, 2011

The Adoption Process is Not for the Faint of Heart

Adoption is not an easy task by any stretch of the imagination.  You would think that since it has been 11 years since we first began the adoption process that I would remember that.  But no, it still gets very frustrating - even after all of these years because of all the various people and processes and hoops that adoptive families have to jump through.

It makes it all the more difficult when the professionals sit on paperwork for months on end and then papers get "magically lost" in oblivion.  Our Little Guy's adoption really shouldn't be this difficult; however, it seems like every time we turn around we're getting pushed backwards!  I'm so ready to have his adoption final so that we can legally be his parents and not have to get permission for every little thing, getting permission to go out of state, or have to write down every time I give him Tylenol or take him to the doctor and have to remember to make sure the doctor fills out the External Services Form and do monthly reports at the end of each month.  I just want to be his Mom - free and clear of the State and the placement agency!  Is that so bad?!?!?!?!?!?

Now, we're being told that we may need to put everything on hold  until after his appointment with the Developmental Pediatrician in October to see if she does, in fact, give him a diagnosis of Cerebral Palsy, so that they can apply for SSI for him prior to our finalization.  I don't want to wait that long!!!!  (Picture me stomping my feet!)   I have an e-mail into our attorney letting him know the latest information we're being told and asking his advice.  We'll see what he has to say.

I'm trying very hard to be patient, but it's not working out very well!  I just want to be done!!!!!!

Tuesday, June 21, 2011

"Strong Enough"

I have lost count how many times people have asked us how we do what we do in regards to taking care of our special needs children.  The only answer that I have been able to provide is through God's grace.  He gives us the necessary strength to carry on and meet and advocate for all of our children's needs.

I heard the song "Strong Enough" by Matthew West on the radio before, but for some reason, today, it really spoke to me.

You must
You must think I'm strong
To give me what I'm going through
Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do

On my own
I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough

For the both of us
Well, maybe
Maybe that's the point
To reach the point of giving up
Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up

And reaching out
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong

When I am weak
I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough
I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

Oh, yeah 

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Strong enough

Here is the story behind the song:


Thank you for being our Strong Enough!


Sunday, June 19, 2011

Seizures or No Seizures? - That Is The Question

The strangest thing happened with Caleb tonight at dinner.  It also happened a couple of times over the last few days.

We sat down to eat and I made rice to go with the chicken, green beans and biscuits.  Now, mind you, rice is the only thing Caleb would eat for months on end.  Well, this time and the last time I made rice he was having nothing to do with it.  But that's not the strange thing.

Caleb was trying to tell us that he he only wanted biscuits with honey.  We told him he needed to eat more than just a biscuit with honey.  He finally decided on eating a peanut butter sandwich.  I fixed him a sandwich and he ate it and was ready for his biscuit with honey.  I started fixing a biscuit and put butter on it - my bad for not asking first!  He didn't want butter.  So I passed that biscuit on to Cassidy.  I fixed him a biscuit with just honey and gave it to him.  He took it and became pretty much catatonic.  Tony and I both asked him what was wrong and he wouldn't answer.  When he finally did answer, after about 20 seconds, he said he didn't want to eat the biscuit.  And his mood completely changed.  We then told him it didn't have to eat it and he started crying.  He eventually ate most of it and was fine.

This has happened a couple of different times over the last few days as well.  He will be fine and then catatonic and in a very bad mood!

Caleb's seizures are such we don't always know when they are happening.  While I am grateful that he does not have Gran Mal seizures, I do wish it was easier to tell whether he's having them.  The only way to truly tell if Caleb's having seizures is to have an EEG, of which he's already had eight!  We just had one in April and it was normal.  The levels of his two seizure medications in his blood were a little lower than the previous time we had his levels checked, so because of Caleb's increased aggression and the fact that his levels had decreased, the doctor did order an increase in his two medications.

I have to take Caleb for some more lab work to see what the increase in the medications have done to his levels.  I was ready to take him Friday morning because he has to be fasting, but then looked at the script that the doctor had given me and he didn't write the diagnosis code on the script.  UGGGGHHHHH!!!!  This has happened before and I really should have looked at the script earlier than the day I was planning on taking him!  My bad!!!!  I tried to call the doctor's office and left a message Friday morning and, of course, they didn't call me back!  Double UGGGGHHHHH!!!!!  I will be calling again tomorrow!

Lately, the last few days as well, Caleb has also been taking many, many attempts to finish a thought.  He will start talking and then repeat what he has said multiple times (as many as five times) until he get through his complete thought.  I really wish there was an answer to help our Munchkin!!!!!

There are many times that I wish I could see into Caleb's brain and see exactly what was going on.

Wednesday, June 15, 2011

Summer Vacation and a Child with a Rare Form of Autism

We are only three weeks into summer vacation and I think this, by far, has been the most difficult transition so far.  It is so hard keeping to a routine and schedule with all of the appointments and camps that we have.

Caleb was off behavior wise the entire month of May and while things are better, there are still many off moments - moments when you just know which version of Caleb we are going to see.

Today I had to take Little Guy to his physical therapy appointment.  We had bought a portable DVD player hoping that if I brought that to appointments with Caleb that he would be occupied at the appointments.  Well, today he watched a short video, but then decided he wanted to play.  So he played.  But then when we were almost finished he decided he wanted to watch a video.  I told him we were getting ready to leave.  He kind of fussed, but I was able to distract him.  He wanted to carry the player, but I told him he needed to put it in the backpack.  After what I thought was going to be a major issue, he did put the player in the backpack.  But then we got into the hallway and all of a sudden I was stupid and he didn't like me and he was refusing to leave with me.  I'd get him to take a couple steps and then he would stop and refuse to go again.  At one point he was telling me he hated me and someone walked past and said, "It's alright."

Why do people seem to have to stick their nose into other people's business.  I was handling the situation and other people getting involved really doesn't help, especially with Caleb.  UGGGGGGHHHHH!!!!  I really need to get some business cards explaining Autism made and keep them with me at all times.

I read this article today and also need to sit down and implement a token and reward system for Caleb when we are out in the community, which I think would help a lot.

One big issue we've been dealing with Caleb has been his refusal to eat.  He's always been a difficult eater and not wanting to eat what I fix.  That has been one battle that we have decided not to fight (and is probably not the right answer, but with so many other things we have to battle, that's just not a battle we're ready to deal with!) and let him eat something different.  Usually it's a bowl of cereal (normally Cinnamon Toast Crunch), waffles or pancakes.  Lately he's been wasting a lot of food, just because he gets stubborn and refuses to eat.  We have stuck our heels in the sand and he does not get a snack before bed if he doesn't eat what he asks for and is given.

Well, tonight he was playing one of his games and was refusing to eat.  We gave him numerous chances to eat.  He got up from the table and I asked him multiple times if he was finished.  He said he was.  I reminded him if he didn't finish the cereal he didn't get anything else tonight.  He said he was finished.  So I took his bowl and dumped the rest of the cereal.  He got upset and went and slammed his door.

When bedtime came, he got very upset when he asked for a snack and I refused to give him one.  Again, I was stupid and he didn't need me any more.

It is so hard to listen to your child tell you that he doesn't need you and it's hard not to react, but we can't react or else things will be that much worse.

I really wish that we could have one good day.    Is that too much to ask for?!?!?!?!?!?!?!?!

I'm feeling guilty, but I'm looking forward to our trip in July.  For a week in July, Caleb and Cassidy will be attending Camp Barnabas and Tony, Little Guy and I will be going to a resort in Eureka Springs, Arkansas.  I know Tony and I both need some time to unwind and not be on edge so much.  But like I said, I feel guilty for looking forward to this.  I'm also praying very hard that Caleb gets under control before camp.  He's never been away from us for that long except for his stays at the psychiatric hospitals.   It should be an interesting week!

We are in our first full summer of in-home support hours provided through the MR/DD Waiver through the State.  We have learned that due to the difference in the amount of hours we're given in June versus July that next year if we do plan on taking a vacation or sending the kids back to Camp Barnabas, then we need to do that in June versus July!  I'm trying very hard not to complain about the difficulty in scheduling, because we are VERY thankful for the help and support that we received through the Waiver, it's just a lot to keep up on!

Some days I really hate Autism!!!!

Sunday, June 12, 2011

Preparing to Close a Chapter in Our Lives

Three years ago Tony and I embarked on a journey of opening our home to foster children.  Over those three years, we have welcomed into our home seven children to live with us full-time; and five to seven children on respite stays, when other foster parents needed help. 

We learned alot during these last three years, including the fact that we are NOT ready for teenagers!

Tomorrow I will dropping off our last foster child at the agency for a visit with her mom and then she will be moving to a kinship placement.  She's been with us for approximately six weeks.  Even if she wasn't going to be moving to the kinship placement, we would have requested that she be moved prior to our July vacation, because we have been feeling that, when our license was due to be renewed July 31st, the Lord was telling us it was time to close it.

While technically our Little Guy is still our foster child, it should be only a matter of time that we will be able to sign the Adoptive Placement Agreement and, hopefully, it won't take too long after that that our attorney will receive the attorney packet so that he can prepare the Petition to Adopt and get us a court date for finalization.

I have mixed feelings about closing our license, but know that it is time.  Things have been so difficult lately with Caleb and Cassidy that it's necessary for us to focus on them and their needs.  Also, our Little Guy's needs are right up there as well.  We meet with our early childhood intervention services team at least three times a month and he has weekly phsycial therapy. 

Being foster parents is a huge commitment, not only to the kids, but you have required number of training hours that you need to have each year, you have monthly visits with your foster care worker and monthly visits with the children's workers - so depending on how many children you have in your home you could have multiple addiitonal people in your home for home visits - meetings to discuss the status of the court orders and court dates, if you decide to go.

I pray that we have made a difference in all of the children that have come through our home and that they know that they were loved and protected during that time!  Lord, please bless all of the children that have been in our home.  Please bring people into their lives that can sow and reap the seeds that we planted while they were with us.  Amen!

So this chapter in our lives will be closing soon and we are looking forward to what the Lord brings us in the future.

Friday, June 10, 2011

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!