About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Sunday, April 17, 2016

Our struggle with Lyme Disease

It's been a while again since I have posted, mainly because I have been going through a lot with Jacob and I work hard to protect Jacob's privacy.  While I do try to keep some parts of life for David and Matthew private, I am also aware that both of them will live a very different life than Jacob will in the future.  My hope is still that Jacob will be able to live a mainstream adult life, and as such I want to ensure that his privacy is maintained.

That said, I always have believed that this blog has been a way to share information and I am already aware of families who have been helped by reading our story, so given Jacob's recent challenges, I want to share how Lyme disease has impacted him.

Last summer Jacob became very moody and there was never really a good reason as to what happened.  As his mom I tried to hypothesize reasons:
* He was missing the structure of school
* He was struggling with going to different camp programs
* Being a brother to Matthew and David had finally come to a head and he was struggling with the stress of his role in the family.....

On and on and on......for every problem I hypothesized a reason.  And yet no matter what I did to try to help Jacob, the stresses remained.  Once school started things were a little better in September and October and then suddenly in November it was as if Jacob's world fell apart.  He had a few weeks of strange headaches, combined with a fever that came and went, but he was never really super sick.  Then his behavior in school and at home really bottomed out.  He was miserable everywhere, he wasn't smiling at all, and he was just drained.  Even football, which he once loved, he hated going to.  Nothing for Jacob was fun anymore, and his smile was gone.

After seeing a neurologist and having blood tests run, Jacob was diagnosed with Lyme Disease.  I may be the only mom in history to cheer at a diagnosis of Lyme disease, but I was fearing some horrible disorder, and so I figured he would be treated with a month of antibiotics and then be "all better"!  I could not have been more wrong.

Now, 3 months after the antibiotics, I am starting to see glimpses of my son coming back to me.  He is happy a lot of the time.  He is asking for friends to come over.  He is acknowledging that he has friends.  He is smiling at school, and he is smiling at home.

When you have a child who is typically happy, and then he becomes dark and angry it is even more scary than having a child who has always had mood fluctuations.  With Matthew there had always been Special Education services, support for mood issues, and a team of specialists to help him, so when he began to struggle emotionally in 3rd grade it was not a huge surprise.

With Jacob my hope was always that he would be the child of mine who followed the typical path in life, and while this has not been the case, I also never expected that he would struggle in a way that made him the most challenging of my boys, and yet this year that is what we have faced.

I am beyond thankful that he has been blessed this year with a team of teachers who have known something was wrong and who have done everything possible to support him and find answers rather than just expecting him to "get better".  Without this team I don't think I could have made it through this year as well as I have.

However, for Jacob, he has not come through this year unscathed.  He now has a 1:1 aide at school, and he is using assistive technology to write rather than writing by hand.  For some reason, we are not sure why or the root cause, his handwriting has gone from that of a 9 year old boy, to completely illegible.  He is very proud to have a computer to bring home and do homework on and to use at school, and quickly has seen this computer as the path to success.

What has amazed me over the past month as Jacob has begun to return to a happier version of himself, is that every tool we have put in place to help him has been met with complete enthusiasm and almost a sense of "it took you all long enough to figure out what would help!"

On the Friday that he was told about having an aide at school he came home excitedly to report the good news.  He then woke up Saturday morning begging to go to school so he could meet Mrs G!  He did the same thing on Sunday morning, and was upset that he had to wait "all the way until Monday!"  Since Mrs G started, Jacob has had amazing success.  While his days are not perfect, she is able to tell him throughout the day how well he is doing and we are rebuilding his self esteem which took a huge hit this year.

Jacob is now part of a social/emotional development program at his school and he loves working on all of the skills that are part of that classroom.  He has been sharing with everyone that the word "antagonizing" means "bothering someone" and tries to use it as often as possible.  He is enjoying the rewards of this new classroom, as well as the responsibility that comes with it.  He knows that he has a new teacher in the school who can help him, but he also has been very successful working in his regular 3rd grade classroom almost all day every day.

Watching him do his homework this weekend I was so proud of him.  Instead of crying when it was time to read, he happily skipped off and got a book.  He then couldn't wait to finish reading so he could do his write up on the computer.  While I watched him hunt and peck for each letter I was fearful that he would get frustrated.  He was just excited to complete a thought without having to rewrite what was illegible and then lose his train of thought!

I hate that for so long we argued over reading, when in reality the problem was him having to write his response to what he read.  For most of the year he has read and then quickly run over to get the paper to start writing only to scream and yell.  Between forgetting what he was trying to write, and not being able to form the letters, it was as if each night he was living in a nightmare of an unattainable homework assignment.  Thankfully, reading seems to now be enjoyable, and the homework that once took forever is now done in a reasonable amount of time with no tears.

I have done enough reading about Lyme disease to know that it does not have a clear line from diagnosis to treatment/cure, but my hope is that over time Jacob will continue to get better.  There are definitely some things that are concerning and we will be following up with a neurologist to learn whether these are permanent changes to Jacob or whether he will regain skills in time.

Emotionally, Jacob is being well supported at school, and is beginning to look more and more like his old self each day.  He is wandering the neighborhood looking for kids to hang out with and for me that is HUGE!  To see my social kiddo go from wanting to only be alone to now finally wanting to be social again makes me so happy!  Losing his friendships was the hardest thing for me to watch. But, I am trusting in Jacob's charisma and the kindness of children, and hope that in time  these friendships will grow again as Jacob continues to return to the happy, friendly child he always was!  I am sure that this path to happiness will not be without bumps, but seeing glimmers and glimpses of Jacob makes it all worthwhile!

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