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Wednesday, October 10, 2012

Can I be Blunt?

I try to keep Carter's blog mostly informational and uplifting but I feel I'm not being true to myself and my feelings.  As Carter's Mom I have a lot of ups and downs and I feel to share Carter's life I need to share those as well.  I don't want to get too personal but I feel by being blunt I can help others out there struggling to not feel alone or wrong for their thoughts.  Carter has for the most part been an easy child until he hit about 2 years old.  That is when we had a lot going on and he seemed to go through some sort of developmental stage/infantile agitation.  He had strep in October of 2011 and was hospitalized for a few days, then in November we started him on the Ketogenic diet for seizures.  About Christmas time he had developed this habit of screaming for an hour a day for no apparent reason.  At this time we also had decided to have his tonsils and adenoids removed to help with his sleep apnea.  Whether the increase of agitation along with the new diet, plus the surgery just put him over the edge- I don't think I'll ever know for sure.  But following his surgery (which I've already blogged about) he was in the hospital for like 18 days for complications and extreme fussiness.  He was not sleeping unless they pulled him in a wagon and he cried for hours a day.  Totally unlike him.  We finally took him off the diet and put him on Neurontin and Klonopin.  With about 3 months of dealing with this darkness, depression and anxiety (while being pregnant no less) I thought a few times of giving him up for adoption.  I often hit my breaking point and only continued because of a wonderful and loving husband.  I even went to counseling to work through my feelings.

I finally shared my thoughts with family and Carter's doctor, and that is when I started researching for respite care like crazy.  I wanted to be able to get help for when the new baby came so I could be with her and not have to focus on Carter so much like I had for years.  About the time Sierra was born, Carter had finally gotten back mostly to his old self.  His seizures had disappeared, he was smiling and laughing again and seemed mostly content.  I thanked the heavens for this fortune as I could focus on my precious new baby.  Both our mothers also took turns taking Carter so I could focus on the baby for about 2 months.  We also had about 8 months of no major appointments, no surgeries or hospitalizations.  I think God knew I had reached my limit and with the new baby needed things to be normal.  In this time of calm Carter has learned to scoot, roll all over the place, stretch and roll everywhere and now goes on all fours and rocks back and forth.  He loves his baby sister and even hugs her and tries to touch her often.  I felt like I had expressed my gratitude enough for the blissful months of feeling "normal" and having Carter happy and pretty easy again.  But in the last month to more the last week or so, Carter has been acting out again with screaming fits and crying fits.  He has now been waking up from 3-5 a.m. instead of 7 a.m.  He hardly naps which is normal but with his increased agitation and less sleep I am starting to feel stretched thin again.

A decision we had made in August was to move closer to family so in the case of Carter being difficult and me needing more help I didn't feel like I had to panic.  I have this tendency to think of flight when I am feeling overwhelmed.  My wonderful husband has allowed me several nights in the past of being alone while he took care of Carter so I could relax.  I've also had many girls nights so I am very fortunate in my husband and his care of me.  Being a Mom of a special needs kid has truly taxed me and been the greatest challenge of my life.  We are now just houses away from my mother in law and 10 minutes from my parents.  I'm not one to easily ask for help until I hit rock bottom.  I often complain more to my husband and doctor than my family or friends.  I want to appear strong and capable and a good Mother.  I often feel guilty for having feelings like this towards Carter but it's true.  I love him of course but many times I question the point of it all and why he has to endure this and me as well.  I am also very aware that as his baby sister gets older I have to watch my words and actions carefully as she will be paying attention. 

With preschool nearing in a few months I feel like for my sanity more than anything else I want to send Carter to the all day preschool.  He will still have 3 full days at home plus evenings and nights.  I think it would be beneficial to him to get more attention, stimulation and therapy while I can focus on my baby girl and nap if possible.  When sleep goes away, sanity is not far behind.  I am often amazed at how many mothers can do it, especially those in our 1p36 group.  I know there are many without families close by too and they are amazing.  What I've always wondered though if they have the same feelings I have but just choose to not share and stay strong.  Well, I don't want to keep silent.  I want to share my feelings at the risk of appearing weak or a bad mother, so I can be honest and help someone else out there struggling.  I thought I could handle a lot but when it comes to Carter, I fold pretty quickly.  He has a way of getting to me like no one else can.  I am not an amazing mother nor do I pretend to be.  I just try to get him the most care possible and everything he needs to compensate for the days I don't feel so loving or compassionate.  I hope one day to find that place inside where I can accept him and my situation with a happy and capable heart.  But for now, I still struggle and paste on a smile when all is not well.  Again I have to thank my amazing husband and Dr. Murphy who has helped me through so much with Carter.  They never judge me but listen and help.  Thanks for reading this.

Tuesday, October 9, 2012

Sleep Meds/ Shriners/ Resources/ Preschool

Carter has not been sleeping very well lately or rather, for months now.  He has been waking up at 5 a.m. and now sometimes wakes up between 3-4 a.m.  Ridiculous!  I finally got his doctor to put him on Trazadone to see if that would help him sleep.  We are still seeing if it works- we may have to try a few things.  Melatonin has not worked in the past, in fact it caused sleep terrors I think.  As much as I hate adding another medicine, I need my sleep to be a good Mom.

He went to Shriners today for his annual orthopedics appointment and his xray looked great.  The doctor was pleased to hear he is close to crawling and is getting on all fours.  Way to go!

I have posted on this blog quite a few resources I have found but I kept thinking it wasn't relevant to those outside of Utah.  I wanted to be able to share my information with others it could help.  Since there aren't many in Utah with 1p36 I decided to share my list with a friend in the ward that has a severely disabled child.  She had no idea about most of the resources and was excited at some of the things I shared with her.  I felt so good that I could help someone out!  Then she had the GREAT idea of typing up my list and giving it to her son's therapist.  Now that therapist is passing it around to all the families she serves.  I know it's not a lot, but it is something.  I was glad to hear my hours of research could help benefit other families.  It's hard enough having a special needs kid, so every little bit of information helps.

Lastly, we had Carter's preschool meeting last week with 5 women to get the information about preschool for Carter.  His testing is this month and IEP (individualized education plan) next month.  We are also going to take tours of the schools to see which we like best.  So we have two options, because Carter sees physical and vision therapy.  He can go to the elementary close by us by bus, 1-4 times a week for 2 hours.  It would be from 9-11:15 and would be a class of 10 or so with 1 teacher and 2 assistants.  The class would have a mix of peers so kids like him and kids more progressed than him.  He would be able to feel included but also watch and learn from the kids that can do more than him.  They would include him at everything- so if they were on the floor he would be too.  Our second option would be DSPD which is the school of the deaf and blind.  It sounds pretty intense but it serves kids with all visual delays not just blind.  That school is a little further away and has transportation by a van.  It would be 4 days a week all day, with smaller classes and a teacher and nurse.  The nurse would help with feeds etc.  He would have the opportunity to nap if he needed to. 

My first instinct was the all day school because Carter gets really bored at home with just me and baby sister and seems to crave more stimulation.  Plus at the DSPD he would get more OT, probably time in his stander and more services.  The only thing I'm worried about there is that it's so long and he won't have a variety of peers.  At Columbia I wish it was a little longer and I wonder if he would get enough attention in a bigger classroom.  I do like the mix of peers though so Carter can watch a variety of people.  Carter loves going in the car, is good in his wheelchair so I felt like he would do good either way.  I think once we take a tour I'll have a better idea of what is best.  I would appreciate any input from other families making a similar decision.  The ladies from the schools were almost fighting for Carter because he is so cute.  It made me feel good.  They really liked him and his sweet smile and personality.  They asked if I had any concerns and I said none.  They said that means we are both ready for this and I think we are.  I do want Carter to have time with his baby sister but I also think getting out more will be good for him as well.