Relying on Others

As you know, Liv has nurses that watch her every night.  Tomorrow is New Year's Eve and I was supposed to go watch my husband play at a restaurant.  The only reason he took this gig was because I could go and we could be together.  Well her nurse called out.  She's going out of state to be with family.  I really try to have relationships with the nurses.  There has to be trust and a bond in order to help Liv.  I just don't understand why she couldn't have talked to me about it and we could have made arrangements or Drew would have not agreed to play.  But since she waited until today, only a nurse that has never been here before can come.  This means I can't go out because they don't know Liv and she doesn't know them.  Imagine waking to a stranger and your parents are anywhere in sight.  She already gets stressed when I just go to the bathroom or get a drink.  So we told the company that we didn't want her as a nurse anymore.  She called me to talk it through but I can't rely on her now.  I mean it's not like she just found out about the trip today.  She could have talked to me last Saturday or something.  I hate dismissing a nurse that we've had for 6 months, but I lost trust.  So my NYE is me, a nurse I never met and Liv sleeping. 

Getting Closer

Last night Liv was standing for a minute, several times.  She even took about 7 steps without falling.  She was so proud of herself.  She was clapping and squealing.  She didn't even have her braces on.  It's so exciting to see progress. 

She also started putting fake phones up to her ear and saying hello.  She pulled herself to a stand at her kitchen yesterday.  She's been blowing kissing and trying to do real kisses on my cheek.  She's been more vocal.  She really wants to talk.  She's looking like such a big girl all of the sudden.  I wonder if it's due to the big girl bed. LOL

Vacationing with a Special Needs Toddler

This week we went to the Poconos for a mini-vacation.  We were hoping to be there for 4 days and ended up leaving early.  I was hoping for snow to let Livy play in it, but no such luck.  We had rain instead.  The first night I went to the outlets and got to leave Liv behind.  The next day we went to an indoor water park that was crowded, of course it was due to the rain.  When you go to a place like that with a child that can't walk, it can get frustrating.  The kids just run through the water and splash her, which she doesn't like.  She didn't mind the wave pool.  That's where we spent most of the time.  I can only take the water for so long.  It would be one thing if Liv could go down some slides or sit in the water herself, but she can't.  It's like having an infant at a water park.  Water parks used to be my favorite thing, but I have lost interest.  Then we went to dinner and Liv wanted to throw all of her toys on the floor repeatedly.  I got fed up.  I can only pick up the darn things so many times.  It's not like this is different than any other time we go out to eat, but I envision vacation as having a chance to breath.  I was so fed up that we decided to cut the trip short and just go home.  I felt better when we got home and everything was familiar.  I'm hoping that someday vacationing will be easier.  We are supposed to go to Martha's Vineyard this summer with family, but I'm not sure if I can do it.  It will be 7 hours away, which means cutting the trip short will be harder.  Plus we never been in the car longer than 3 hours with her.  It's stressing me out and we aren't even close to going yet.  Maybe I'll just have to pass.

Big Girl Bed Night 2

Last night was awful.  Liv fell asleep in the car an hour early.  She woke up at 10:30 and wouldn't go back to sleep.  I spent a lot of the night laying in her bed trying to get her to sleep.  She woke up at 5:30 am so I crawled back into her bed and she slept off and on until 7:30.  I'm hoping for a better night tonight.  We have a big day tomorrow and I need my energy. 

Big Girl Bed Night 1

We put together Liv's new bed last night.  She looks so tiny in a big bed.  Her doctor said she needs to go to sleep without us holding her and that might help her sleep through the night.  So we figured we would put together a twin bed and do the new routine with a new bed.  The nurse said she woke up twice but just to look for her binky.  My husband is worried that she is going to fall off.  Of course it's against the wall and we have a bed rail on the other side, but there's still a gap.  Everything was fine last night so I guess we will just continue to see how she does.  She doesn't understand that if she leans off of the bed or couch, that she will fall off.  I hope she continues to do well with it.

Self Feeding

Livy was doing it again yesterday.  She was feeding herself Cheerios.  She hasn't be able to do this before because of their size.  She still rakes and has trouble getting them in, but she was doing it.  This is so exciting.  She's not ready to do it all the time though.  I tried it with a french fry for dinner last night and she just wanted me to do it.  I guess we have to start somewhere and we will get to full self-feeding one day.  She does not like to touch soft and slimy things, so that will be awhile before she self-feeds fruits and some vegetables.  At least we are on the right path!

Developmental Appointment

Today we went to the Developmental Pediatrician for the first time.  It was a long appointment and we didn't get as many answers as we were hoping for.  I guess we didn't really get much at all.  She has to go back every 6 months, so now that's another doctor to add to the list.  She told us that Liv is about an 8-10 month old developomentally all around.  Kinda hard to take when she will be 3 next month.  She has a full write up that she will mail to us and it will have her IQ score on it.  She was also concerned about the way Liv walks, so she gave us a recommendation to have that progress looked at, which means another doctor.  I guess I'll call tomorrow and book that appointment.  Liv just had no interest in the toys that were presented to her.  It gets frustrating when you know she can do something but won't for others to see.  Oh well.  Everyone there loved her because charm was on full blast as usual.  She gave us some tips for getting her to sleep through the night, but I guess if she's not mentally considered to be 1, she might not sleep through the night until she is.  We will get her big girl bed set up this week and I'm hoping that will help.  I guess sometimes we hope someone can look into the future for us, but that's never going to happen.  Again we were told that they have never seen the combination of the two disorders together which makes it even harder to tell what the future holds.  As long as she stays the snuggly, sweet girl that she is, she will be just fine.

Visitors from Across the World

Liv's Aunt Polly and Uncle Tony are coming to visit from Africa.  They haven't seen Livy for 2 years.  I can't wait for them to see her.  They have been keeping up with her by reading the blog and looking at pictures through Shutterfly.  They will be at our house on Saturday, which is great because she really acts herself when she is here.  They will also get to see her on Christmas.  She's going to be great this year because she's really into ripping paper and toys.  This will seem like the first time she is understanding what's going on.  It's great they will get to see her reactions to presents.  Can't wait to see you guys!

Endocrinology Appointment

Today Liv had her appointment.  They said her growth is normal for a girl her age, however she is only in the 1 percentile.  She is on the 50% for the Turner's chart.  That's great!  They said she probably won't need growth hormones until 5.  At least that's one less worry for now.  We did get scripts to check her thyroid levels.  She has to get her Topamax level read from Neurology, so we will get them done next week at the same time.  They are happy with how well she is doing.  She isn't really showing signs of Turner's.  No heart problems, no kidney problems, no webbed neck.  I'm hoping for good test results!

Neurology Appointment

The appointment went well today.  She hasn't had seizures since her last appointment, so they didn't change the meds.  We thought she might have to have an EEG, but since she is doing well, we got to skip it today.  We go everything 3 weeks and they were surprised to see how much she is doing.  When we went in August, Liv only had her walker for a month so we didn't take it out with us yet.  Now she walks around the hospital until she is too exhausted.  Of course she makes everyone look at her and tell her how cute she is.  Yay for a good appointment.  Next one is in 3 months.

Endocrinology appointment tomorrow with updates following.

Home Sick

Liv had a fever last night and still had one this morning.  It was obvious that I was going to keep her home today.  She was fussy and kept calling for daddy while he was getting ready.  (yes I'm jealous that she can say daddy and not mommy)  I brought her downstairs and put on Mickey Mouse to have her relax.  She saw Drew put on his coat so she grabbed a toy and wanted him to pick her up.  That's what she does when she leaves for daycare.  She thought she was going to school today.  It was so sad.  She was so upset and cried for about 15 minutes after he left.  It's amazing that she thinks she should go to daycare even though she feels like crap.  Her determination is the most beautiful thing to witness.  She has more strength than I will ever know.

So Funny I Almost Peed

My daughter was sitting with me on the couch eating popcorn.  I was breaking it up and feeding it to her.  She kept reaching into the bag so I figured how bad could it be if I let her feed herself.  She did it!  She picked it up and put it in her mouth all by herself.  She did it over and over.  It was so exciting that my eyes teared up.  Liv is almost 3 and we have had to feed her everything as if she is 8 months old.  This is a huge milestone for her.  While I'm marveling in this amazement of my child, she decided to pick up the bag and put it on her head, and yes the popcorn was still in it.

Stationery card

Starlight Snowflakes Christmas Card

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Posted from a Tweet of a Parent with a Special Needs Child

To Whom it May Concern,

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.
So I ask you, please


The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face,  know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.
The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

By: Marianne Russo

Christmas Decorations

Livy is learning what "no" means.  It's taking her a long time to understand the concept and at times, she chooses not to listen.  I'm worried about putting up a Christmas Tree.  I can see it now, she will walk up to it with her walker and yank it down.  I can't imagine seeing a tree crushing my daughter.  I didn't decorate at all last year due to this fear, but I felt like it wasn't Christmas.  It's tradition to decorate.  I think I will wait until next weekend to put it all up so there's less time that it's up.  I guess my patience will be tested in the next month.

Getting Ahead of Myself

Today I told the principal that I needed off on Monday because Livy has an appointment.  I'm a week ahead of myself.  So now I have to wait and see if I can go into work on Monday because she may already have a sub in my place.  She hasn't had as many appointments as she used to and I guess now there's too much time in between for me to know what's going on.  It's a great thing!  Most of her appointments have slowed down a lot.  Some doctors we had to visit once a month and now it's once a year.  She definitely doesn't get as sick anymore either.  Well I might be able to work on Monday, but if not, it will be a nice day off.

Preschool Part 2

I called yesterday to make sure all of Olivia's paperwork was completed and to see if she was set up for school.  I had her caseworker call to reserve her a spot and of course I had the paperwork done in a week (including the papers from the doctor).  She is all set and they gave me her schedule.  She will go on Tues, Thurs, and Fridays.  I'm so excited that my child will be in a learning environment.  Being a teacher, I wanted her to be in a daycare that would do the same.  The problem was that her epilepsy was out of control and she couldn't stay at the daycare she was in.  She needed to be in a medical daycare.  I love it, but there's a lack of learning.  She starts Feb 2.  I can't believe how fast she is growing up.  This school is perfect for her.  If it turns out not to be then we will search for the one that is.  But I really believe that it will be great for her.  I have to prepare myself for birthday parties and Halloween parades and art projects.  I hope she learns a lot from the other students.  I just know that she will love it!