Tuesday, April 23, 2013

Its been a while (2 yrs) since I started my blog.  My initial goal was to blog at least once a week or at least once a month.  Im such a slacker but life gets in the way. Between regular doctor appointments, therapies, specialists, activities that sometimes I feel like i have no room to breathe.  But Im going to try and play catch up with just this one post and then try and keep a regular schedule of blogging.

Its been a crazy past 2 yrs.  My youngest son with Prader Willi Syndrome  now has an official diagnosis of Autism as of last June.  He has come a long way since he was born being that floppy rag doll.  We took a break from Speech therapy in 2011 as I was not pleased with the therapist telling me he wouldnt qualify for a communication device.  She said he can talk.  Yes he can talk but its repetitive and he stutters.  Plus he is not consistent with his talking and majority of the time I cant understand what he is saying and he easily gets frustrated.  So we started going to a new speech therapy and he is slowly coming along.  His therapist is working on no-tech/low-tech communication to demonstrate that he can do it and eventually we are looking at possibly sometime this summer actually having 2 companies come and work with him to find out which device is better for him.  My goal (and hope) is that he can get the DynaVox Mastero to help him put a full sentence together.  Its also highly recommended for children with Autism.  http://www.dynavoxtech.com/products/maestro/

He also had a bronchoscopy done Feb 2012 with showed that he has double passageways in his lower lungs (bronchial tubes).  Which helps explain why he gets congested very easily especially during the winter months.   So far, I have kept on top of it by giving him at least one breathing treatment a day and he has not been seriously sick so far.  We have had other issues but nothing major.  His biggest issue is his weight gain.  But its a struggle with him going back and forth to his dads house.  He buys alot of processed/premade forzen foods and doesnt but much fresh vegetables or fruits.  On the other hand, I have been sticking to the outer perimeter of the grocery store and limit going down the isles.  He loves salads so he has at least one or two a day and that includes at school.  Rarely do I take him to the grocery store with me, but when I do, he makes sure he picks out his lettuce, grape tomatoes, carrots, mushrooms, and mixture of diced peppers.   He enjoys going to school and loves his teacher.  He sure can be a character sometime.  Like the other morning he woke up early only to use a baby wipe on my pinkie finger and then put a Spongebob bandaid on it.  I was half asleep when he did it.

He still has his meltdowns from time to time but not nearly as bad as they were 2 to 3 yrs ago.  Mostly its out  of frustration due to limited communication or he is tired.  He sure does love his brothers and sister.  And tries to interact a little more with them lately compared to not at all other then hitting them when he is upset.  He loves to hug.  And definitely has a strong grip when he hugs you.

My middle son is doing ok.  His ADHD is still an issue from time to time but his ODD is his biggest obstacle.    Unfortunately his ADHD meds doesnt help with that.  LOL   He has been on the A/B honor roll until this school year.  He hates to write as it is fatiguing. So doing writing prompts is where he is struggling.   He is getting OT and will be discharged end of this month and will go to once a month to help keep up.  Finally was able to get a 504 plan for him but now I need to request that he gets evaluated for OT in school.  His private OT said that she sees a few kids that have 504 plans that also get only OT in school.  If I can get him qualified, then she can drop him completely from private as she cant do much else with him as he has reached his goals and the school can focus on his school work more with him.  He also has a lot of depth to him.  He can carry on a very good conversation with someone about what he is learning in science or other topics.  This weekend he will be going with the Church choir to perform in New Orleans.  This will be his first time being away from me besides when he goes to his dads..  Im not nervous about it at all.   I know he will do great.  He also has been picked to play his recorder along with an orchestra at the local college.  He is nervous about being in front of all those people.  But Im proud of him for being picked and told him that most people wont be able to see him behind the stands for the music.  He is looking forward to middle school in another year so that he can start playing another instrument and be in the band.

My oldest son with Klinefelters Syndrome has been a challenge.  Ive been able to understand more with the help of other mothers with children that have KS and men that have KS.  Finally had him seen by a neuropsychologist for further testing to see where his strengths are and where he is struggling.   We will see him again before he goes to middle school and also high school to make sure he is properly placed in school.  His emotions are up and down like being on a roller coaster..  Ive learned to deal with it the best I can.  Sometimes I can redirect him to go lay down and turn on the tv low and sometimes he will take a nap.  We have also seen an endocrinologist and found out his thyroid is not working like it should.  Plus eventually we will be looking at Testosterone Therapy in another year.  Each school year he struggles with following through and understanding everything but excels in math.  He has finally figured out last week what he really likes to play with more then anything and that is Trains.  Glad he has figured that out.  He is not much into sports but will watch NASCAR racing if I remember to turn it on.  And he also has a race car set that he loves to play with.

As for me, Im trying to take better care of myself as we continue our journey down the path of the still unknowns.

Tuesday, January 4, 2011

Here goes nothing

OK.  So Ive finally decided to blog.  I'm not really sure why but Ive always liked writing in journals about my thoughts and feelings.  So I figured this could be a good thing and give it a shot. 

Yeah when I was a young girl I had a diary.  Nothing special and who knows whatever happened to it.  But my first journal I wrote in for about 4 months.  I had started shortly after losing my baby back in 2000.  She was stillborn at 33 weeks.  I had a fairly good pregnancy and had just seen the doctor several days before.  Heartbeat was good.  Then nothing.  Cause was unknown.  I will say writing that journal was very therapeutic and helped me get through a very difficult time.  I hope to share it with my children.  And one day I will write about her for you but this is just my first entry and I really want to just give you some highlights.

So what is this journey without a map going to be all about you may wonder.  Well, for starters, I'm a single mother to 4 children.  My oldest is now in her 20s.  I'm very proud of her and all her accomplishments.  From time to time I will blog a little about her.  But this journey entails my life and raising my 3  young boys all of whom have special needs.  Somehow what I thought would be fairly easy raising 3 young boys changed one day.  And somehow I ended up  going down a road that didn't come with a map.  No complete direction as to where we are going or where we will end up.  But I will say this much I am a very persistent person and will always look for the answers I need for my boys to succeed in life. Children with special needs tend to get labels.  Sometimes this can be a good thing.  Especially when it comes to getting your child what they need.  This applies mostly in the school setting. 

I would like to keep my first blog to a minimum.  So I'm just going to let you know what I'm dealing with.  My oldest son was diagnosed with Klinefelters Syndrome.  He also has ADD, seizure disorder, asthma, and speech and language delay.  I'm in the process of seeing whether or not he is anywhere on the Autism Spectrum with leaning towards PDD-NOS.  My middle son has ADHD and he will be tested for Aspergers (high functioning Autism).  Then most of you know about my youngest son.  He has Prader Willi Syndrome, seizure disorder, central sleep apnea, hypothyroidism, far-sighted, and respiratory issues (mostly in the winter time).   I'm sure I probably forgot something.  But he has had a total of 3 surgeries all before he turned 4.  

So one can see as most have said to me "you have your hands full."   Yes, I sure do.  There are days where things are so crazy that I wonder how I ever made it through.  Which is why I decided to name the main title of my blog 'Journey without a Map.'  It just all made sense to me.  I'm on this journey with 3 young boys, sometimes with no direction and yet we manage to get through another minute, hour, day, or week together.  So many therapies, doctors appointments and tests.  I always wonder where are we headed next?