Thursday, May 16, 2013

MY FEARS CONFIRMED

My adopted daughter Jayde came to me on her very first birthday. She was a big blue eyed little girl filled with so much energy . She instantly fell in love with Bill and she became "Daddy's GIRL" She would only sit on him. Would go to him when she needed comfort. It was an instant connection  for both of them.

Jayde had a traumatic start to life. But she was a tough little thing and nothing ever stopped her. She was admitted in the hospital at least twice a year with RSV, or collapsed lungs, or severe asthma attack until she was about 6 years old. In emergency monthly for many other things.  At 3 years old we discovered Jayde had epilepsy. At 4 years old Jayde was diagnosed with FASD (Fetal Alcohol Spectrum Disorder) and ADHD.
Things have been challenging to say the least but such a blessing as well. There is something so sweet and innocent about Jayde. When things are really bad she will come out with the most outrageous comments or with some of the most profound statements ever. I am always blown away by her.

I remember going to the appointment at the Glenrose with Jayde for her assessment and remember Dr. Andrew confirming what I already knew was true. That Jayde was FASD. Although I knew it in my heart, it made it real when I heard someone actually say the words. All the way home I cried. I was at first angry with her birth mom for drinking while she was pregnant with Jayde. That anger didn't last too long as I knew that she most likely didn't understand the damage she was doing to Jayde. I cried because I knew the challenges we had already had and was sad abut what the future held for her. I cried because I knew this was a life sentence and there was nothing that could make it better.  I cried because I thought wow God must really trust me a lot to place this little girl in our home.
I also had HOPE. Hope  to know that this is a spectrum and many kids do well and can function well with FASD. Hope because I was not alone in my struggles. I found an amazing support group on line. I have amazing family and friends and my wonderful Crossroads family. HOPE because if God brought her to me He would give us the strength to raise her.

When Jayde was  diagnosed they told us to bring her back when she is a teen to reassess her and see what her long term prognosis is and start to do some planning for her.

So on her 13th birthday Dec 18 2011 I called to make an appointment. The lady I spoke to said it will take a year and half to two years to get in. I thought to myself I will be able to assess her on my own in that time. Seriously in two years I will be able to tell you if she could live independently or not. .
We started the ball rolling filling out paperwork and setting up appointments with psychologists and doctors etc. We finally had an appointment set for May 15 and 16 2013.  1 year and 5 months later.

A week before the appointment the GLENROSE called and said that due to the results of her testing from the psychologist we will not need two days and will only need half a day to examine and assess. GREAT!

Well yesterday was that day. Dr. Andrew talked with Jayde they did an exam on her. they have a scale of measuring the face of an FASD person. starting at 1 being normal and 5 being full facial features. Jayde is at a 4. They looked at both of her hands. Jayde has the typical "hockey stick crease" that FASD kids have on one hand and a Simian crease on the other hand thats typical for Down syndrome children and FASD.

(See images below to see what those look like.) It was my understanding that it was not as typical to have both hands with both palmer creases.




SIDE NOTE I  realized I  have a SIMIAN Crease. I hid my hands from the doctor lol and ran home to search it. To my relief it is not only down syndrome and FASD kids that have it sociopaths do as well. LOL GOOD TO KNOW!  There are also some famous people who have simian creases. Tony Blair and Hilary Clinton do. So I guess its a mark for political people. Also Robert De Niro has one as well. So if you are looking and see you have one don't be afraid. LOL just go into politics. 
Back to my story....

As she was telling me this, it was information I already knew as it is all part of her having FASD. So I  guess it was just "confirming it once again" 


What I wasn't prepared for was the next discussion. We put Jayde in a playroom and Bill and I went into the room with Dr. Andrew and a social worker. Dr. Andrew said I cannot believe the change I see in this little girl from the little 4  year old girl I saw 10 years ago. I' m thinking WOOO HOOOO shes doing well. 

Dr. Andrew continued to speak "Normally FASD children will grow and develop and hit a plateau and stop. Jayde is regressing. she didn't really even grown, she crashed! Her IQ has dropped down to 62, not normal for that to happen. We believe something more is going on with Jayde for this to be happening. This is not the norm."

Part of me wants to say I was in shock but like the first diagnosis it was confirming what I already was suspecting. Both my mom and Christine had asked me if she was regressing  I thought so too but I said I didn't THINK so but would ask the doctors. Her pediatrician and her psychiatrist both assured me that NO she wasn't regressing . Chances are when we get her meds  stabilized we'll see improvements AND the fact that she is 14 now just shows a LARGER gap. At 5-6 and even 10 it wasn't as noticeable but now at 14 it is very noticeable. So I allowed myself to believe that. 

The million dollar question is "what is causing this?" We know she does have epilepsy so the thought that maybe she is having seizures that we are unaware of and they are causing brain damage. We can do an MRI to see if there is a tumor or something on her brain. Or look into other factors. 

We also are not aware of what her genetic background history is. Maybe there is something genetic. So we will go for genetic testing. Apparently they have state of the art testing her in Alberta (maybe Canada) anyway they take blood and send it for genetic testing. The downs side is it can take up to two years to get the results back! WHAT!????? once again I say someone can diagnose her with something in that time just by examining her. TRUE. But the good part is at least I will have the information at some point for the future. 

On top of all this information  I also learned that 94% of FASD children will end up with a mental illness. I knew it was high, but not that high. Who knew???

So once again I am sitting with a diagnosis and prognosis I knew in my heart to be true. Its validating in some ways because it says I'm not exaggerating or imagining things. It was validating too that they were surprised that I have gone this long without help. It wasn't until a little over a year ago Christine started doing respite for me and then this fall Bronte  became an in home aid for a short time  and now Victoria. Without these ANGELS I don't know what I would do. They are such a gift and blessing to me. 

On the way home I hold back the tears because its just Jayde and me in the car and I don't want her to know whats going on. I went out and spent a wonderful time having lunch and frozen yogurt with her. We went and bought her grade 8 grad dress. She asked for a dress that "PEOPLE WILL REMEMBER ME BY AND NEVER FORGET THE NIGHT" She could have asked me for the moon.  I would have done anything I could to make her happy and her life easier. 

I went to my Crossroads family and cried in my friend Emelyn's office. I cried for whats ahead. I cried because I am a single mom now having to deal with this. I cried because I'm scared and I'm sad. I cry again because once again I know that this is not a coincidence. She was placed here for a reason.

This is good for me too. I believe it will allow me to be freer with her. I am hoping it will let me be less frustrated with her. I know there will be days that her behaviors and such will bring me to a point of total and utter frustration. I also know that she CANNOT help it! She is NOT doing this on PURPOSE. I also found out her memory is at 1%. So virtually no working memory. So I can tell her a million trillion times not to do something and chances are she won't remember. I HOPE that I will PRAISE her and REJOICE when she does REMEMBER something! 

I get overwhelmed thinking of all the appointments and testing that we will be doing in the next little while. I am scared at what the results could be. I am overwhelmed at all the government hoops I will have to jump to get her into group care and get the help I need. But its all one day at a time. One BREATH at a time! 

 ONCE AGAIN I HAVE HOPE! I am not alone! GOD IS WITH ME! HE Brought me to this and HE will bring me through it! I can never say this enough . I am so blessed to have my family, my friends, my church family, my FASD support group, Crossroad's, my Victoria who knows a little of what it's like and my Christine and Brian who experiences it on weekends. 

THANK YOU GOD FOR THE TRUST YOU HAVE IN ME AND FOR ALL YOU GIVE TO ME! 


4 comments:

  1. cheryl lundy stuartMay 16, 2013 at 7:20 PM

    Oh Karen what a wonderful post....thank goodness for people like yourself who not only open your doors and cupboards to these kids but also your heart.....having gone thru all the testing and appointments you at least have something you can start with. I know you won't allow her to use the diagnosis as a negative crutch that would allow her to use this as a reason for not doing something to her benefit..but it can also be a positive crutch that can help support her when she needs it....I can only say thank you for being such a great mom

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  2. Karen, Jayde is such a jewel. I know that there are MAJOR difficulties and I know that the days are hard. But I have seen from the very beginning that she is so meant to be your daughter. God chose you for her and her for you. I don't know what the future holds but I know that He does. Any chance you can feel the huge virtual hug I am sending your way?

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  3. Many Many Hugs to you Ms Karen. I pray that the Lord will bless you with encouragement, tangible expressions of the love He has for you and your willingness to be His Hands & Feet, and I pray that you will get to know Him better & the love He has for you as you care for His child. Bless you my friend.

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  4. Karen, I'm sooo glad that God gave Jayd to you! He knew just who would love her the best, challenge her the best, watch over her the best, and of course, the one who would let God lead each and every moment of this precious child's life! You and Bill have done an amazing job, and you will continue to, by Gods grace, take her into adulthood! Love you, praise God for you!



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