B is for Bike

B is for Bike!!

A few years ago we came to the conclusion that Alicia would never be able to ride a bike without assistance.  Through her PT at school at the time we discusses various options that were out there for her.  I spend hours and days looking online and researching various bike and various styles of all these bikes.  It was quite overwhelming.  I ordered any catalogs that I could get my hands on that had bikes for Alicia.  You need to order a bike that is going to be designed specially for her.  The bike needs to fit height, weight, lenght, width, and many, many more measurements. 
I was speaking with a friend of mine who has a son with Cerebral Palsy.  She had gotten an adaptive tricycle for her son through The Save The Kid Fund, which just happens to be based in CT.  So I figured I would give them a try, what is the worst that can happen, they say no?
So I researched and researched what type of bike we wanted for her.  We knew she needed an adaptive tricycle that would help her to stay seated upright (with the proper restraint system), pedals that would make her bike go that we could manipulate because she can't push the peddles on her own. Leg and feet straps so she could stay securely in the bike and many more things someone with a normal child would never have to give a thought to. 
So we jumped through the needed hoops, got a letter stating that there was a legitimate want/need for Alicia from her PT (physical therapist).  This bike gives Alicia good exercise, especially in her legs that are being forced to pedal.  I believe that this constant leg motion will in the future help her to have a more balanced gait. 
So we were able to get Alicia an adaptive tricycle and the first time we ever put her on it was amazing.  She beamed from ear to ear and just couldn't stop smiling.  She was happy the minute we put her on there.  She was also very patient with us while we were trying to figure out how to properly restrain her in the bike to minimize chance of injury.

The following like is a like to information regarding this charity.  I was checking up on the work they have done since I had worked with them for Alicia's bike and I got quite an amazing surprise.  They used one of the pictures I sent to them of Alicia on her bike and put it up on their website.  This following link will show Alicia, all smiles on her bike!

http://www.savethekid.org/aboutus.html

Another A: A Is For Appreciation

(Yes, this blog is entitled "A to Z" and yet, here I am, writing under another letter "A", but this is what was layed upon my heart....I will get to the other letters eventually...LOL)....
The words "thank you" just sometimes aren't enough.  When I think of all the family and friends who have supported me and my family through the already many difficult times we have had raising a special needs child, "thank you" doesn't even come close.  In my opinion, I have the greatest, most supportive family and friends that a person could ask for.  They are always there, whether it be a listening ear, a shoulder to cry on, a joke to laugh at, a spring board to "bounce" ideas off of, or to just sit and enjoy the silence.  They know when I need to talk and they know when I just need a hug or an encouraging smile.
My family and friends would, and do, many things for me and my family.  I can always count on them for support.  My family and I have been truly blessed!  Thank you all for your constant love and support, I love and appreciate each and every one of you! 

A: Is For Accomplishment

When you have a child with special needs, sometimes the smallest accomplishments just make a world of difference.  A parent of a child with special needs has a very different definition of what accomplishments are compared to a parent of a "normal" child.  Just this evening Alicia had an accomplishment which in my eyes is MAJOR.  For the past couple of years we and school have been attempting to try to potty train Alicia.  Since she has started at a private program (outplaced from the public school system), we have been more aggressive in our "potty endeavors".  She has a special type of toileting system which thank God her school lets us use at this time.  Unfortunately our insurance does not cover ANY of this cost and it comes in around $1100-$1200.  Yes, you read that figure correctly.  It absolutely appalls me that insurance companies do not cover more adaptive equipment for special needs children, especially what we pay to even have the health insurance in the first place.  As of now, Alicia is on a wait list for a refurbished toileting system, but we have been able to use the one on loan from the school.  It is very difficult to pinpoint the times that Alicia may have a success on the toilet.  We are trying to get a schedule in place since routine is a huge part of our lives with Alicia.  Right now we believe the best times for trying are right when she gets home from school, either right before or right after dinner and right before bedtime.  Well this evening on our attempt right before bedtime, we had success on the toilet!!!!!!  I am such a proud Mommy this evening.  It may not seem a big deal to other people, but this is a small step in a big positive direction. 

It's Difficult to Deal With Breaks In Routine....A Quick Example....

A regular daily routine is one of the most important things for Alicia.  With most children with Rett Syndrome and Autism, a regular routine helps to keep them focused and happy.  A quick example of what happens when things are not the same I experienced yesterday and this morning (not for the first time and definitely not for the last).  The bus driver that picks Alicia up for school told me that she was going to have a bigger bus today.  Well bigger meant a difference in the height of the stairs, the seat her harness was attached to, not the same rails to hold onto when we get on and off the bus and she wasn't sitting in the same seat she usually does.  She has always had difficulties with her fine/gross motor skills and has at times a very unsteady gait.  I watch her walk all the time and think to myself, what are we going to do when she's not able to walk anymore on her own?  Well the answer would be obvious (a wheelchair), but your mind just refuses to go there.
So we had the different, bigger bus pull up yesterday and this morning.  Before the bus even stopped at the end of the driveway, Alicia was already pulling back and shaking.  If she gets very nervous about something she has "postural tremors".  Sometimes these "tremors" look exactly like seizures.  I always keep a close watch on her eye contact to make sure that it is indeed not an actual seizure.  When she did have an EEG years ago, it showed abnormal brain activity but nothing that actually showed she was having an type of "regular" seizure activity.  Honestly, I believe at some point the seizures will start but every day I hope and pray that it won't be that next day.  There are so many questions and concerns that I just won't have an immediate answer to and I just have to wait it out.  My hubby always tells me to not over worry about things and just take it day by day.  I am not very good at doing this at all.   My mind travels to way down the road and what more difficulties we could possibly be facing with Alicia.  I am really the type of person that needs to "stop and smell the roses", not pass them by. 

A Quick Very Emotional Video

http://apps.facebook.com/chasecommunitygiving/charities/311682518-international-rett-syndrome-foundation?src=charity_share

While playing around on Facebook today (just like every other day), I typed in "Rett Syndrome" into the search box.  I found this link on the IRSF (International Rett Syndrome Foudation) and watched the video that is posted on there.  A 12 year old boy made this video about his sister.  I watched this twice already, aren't able yet to view it a third time because I am at the present time too emotional to be able to view it again and keep it together.  One of the characteristics of Rett Syndrome that Alicia has is not being able to speak.  So many times I have told Hailey to "be quiet" for various reasons and we all hear it from parents while shopping, in restaurants and out in public.  I am ashamed to say that I even tell my oldest daughter that while my youngest isn't able to speak to me.  So many parents take for granted the fact that their children can speak to them.  I do get "Hi" from Alicia and "Mama" when she is very upset.  My husband sometimes gets "Hi Daddy" and Hailey sometimes gets "Hailey".  We were ecstatic last year when Alicia's speech pathologist got her to say "Up" meaningfully.  But it was not meant to be as we now only get that very sporadically.  The day her paraprofessional, speech pathologist and special education teacher brought her out of school at pick-up and had her say "Up" on command, it brought us all to tears, it was one of the happiest days of my life.  I was also able to get a quick video of her saying "Hi" and will treasure it always.  NEVER TAKE FOR GRANTED YOUR CHILD'S ABILITY TO SPEAK!!

A2: Alicia, the beginning years......

So I had to call this blog A2, after all, Alicia deserves her own story under "A".  Alicia is our youngest daughter (8 years old).  She does have an older sister Hailey, age 10. Alicia is quite an amazing little girl.  Alicia was born in March of 2003.  While we had some "usual" issues while she was an infant (reflux, colic and having the swing be the main thing that always seemed to settle her down)...we had no idea what the future had in store for us.  At 6 months old we started taking her to a physical therapist due to torticollis.  For those of you how have not heard of (or don't know about) torticollis, it is:  stiff neck associated with muscle spasm, causing lateral flexion contracture of the cervical spine musculature.  Now in English for those of us that do not have a highly educated medical degree:  it is a condition in which the head is tilted to one side.   We had PT (physical therapy) once a week for about 6 months.  Each week I would load her up in her carrier and travel to CCMC (Connecticut Children's Medical Center) for our weekly appointment.  Still at this point, we didn't see anything "wrong" because this isn't an uncommon medical condition among infants.
As time went on we went to our regular pediatric well-care visits and marked off our milestones as we made them.....until we started not to make each one.  We stuck it out, figuring that she was just late in making her milestones, after all this is also common among infants/toddlers.  When she didn't hit her sitting up, babbling, walking, "regular" crawling and two-word babbling we knew that we needed to start investigating further.  Hence began the various specialists that we would start seeing.  We were referred to a Developmental Pediatrician to have Alicia evaluated.  The amount of paperwork that you have to fill out before you even get to see the Developmental Pediatrician is very overwhelming.  You begin to become an expert in the field of filling out information on when a milestone was/or wasn't made, sleep patterns of your child, tests your child has had (and you can name, spell and write down the exact date and results of each one from memory) and anything and everything about your child.  Then came the 2 hour evaluation appointment of speaking with the doctor, going through the history it took you 2 weeks to fill out, the doctor "testing" your child, other specialists watching through a "one way" window, and then asking question after question, after question.  This is just the beginning of preparation for making you an expert in the medical history of your child that you will have to repeat for the rest of your life at various medical appointments, evaluations and meetings.  After several appointments with the Developmental Pediatrician Alicia was diagnosed as having Global Developmental Delays with Autistic Features.  I told my husband that our daughter sounded like a car model.  She was delayed across the board in all aspects (speech, gross/fine motor skills, all things developmental).  So the next step was to start getting "services" for our child to help her catch up with where she needed to be.  We started receiving Birth to Three services that entailed a special education teacher, a physical therapist and an occupational therapist coming out to the house every week to work with Alicia.  They did various things with her in terms of working on speech and fine/gross motor skills.  Things would seem to get "better" for a time and then back to where we were.  Alicia went right out of Birth to Three and began preschool (in an integrated regular peer and special education program) the day she turned 3 years old......more to follow soon.....

Happy 4th Of July

Today's post will be "short and sweet".  I am currently working on several posts under "A", but there is a lot of information in those posts and they are very emotional at the same time so it may take me some editing, editing, and more editing to get through them....so for now, a simple post to say "Happy 4th of July", everyone have a wonderful day and stay safe!!