Special Moms, Special Healing

About a month ago I took some much needed time for myself to attend a one-day conference for mothers of special needs children.  The conference was held at a beautiful ranch in the local area that offers a tranquil and natural environment for special needs children so it was the perfect location for us.  The organizer and host was the amazing Julie McAllister.  Julie started the support group Special Moms, Special Healing because she understood firsthand that mothers of children with special needs could use additional support to cope with their new normal.

I can not believe that it has taken me this long to blog about my life-changing experience that day.  It has been 16 months since Reagan's diagnosis and I thought that I had a grip on the grief that took over my life once we received the news.  I felt that I was coping better with Rett Syndrome and the new dreams that we were going to make for our daughter.  However, I realized after this conference that I was not coping any better, rather I was only better at putting on a strong face that everything was fine, sometimes even convincing myself.  I had lost touch with who I was as a person, mother, wife and all the other things that I am other than a mother of a special needs child.

There were two wonderful speakers at this conference and I could write a full post on each of them and the positive influence that they had on me that day.  But I want to focus on my experience in itself from this conference.

I knew that it was going to be a difficult 8 hours when I could not even speak a full sentence during the introduction without breaking into tears.  I did not hold back though, these women understood the pain that I was feeling and I felt the love from each of them.  We had a breakout session during Mindy Audlin's presentation where we asked our group for positive input on how to reach a goal.  My goal was to finally be at peace with my daughter's diagnosis.  There were a lot of great ideas but the one that made me stop in my tracks was "to tell other people about the diagnosis".  It was then that I realized that I do hide from Rett Syndrome and tell people only on a need to know basis.  This is my life, it is my reality, and hiding from it only means hiding from myself, tucking it so deep down inside that it is as lost as I am.  I have talked more about Rett Syndrome in the last 5 weeks than I have in the past.  I give out purple cards to other parents in Lauren's Gymboree class and told strangers at retail stores.  It is a major step for me and it feels empowering!

During our break I walked the nature paths and found the serenity springs to gather my thoughts.  I felt reconnected with myself, with nature and also a higher power.  That feeling of reconnected has stayed with me since and I find myself taking deeper breaths when I am outside and trying to soak in my natural surroundings as much as possible.  The feeling of peacefulness and calmness surround me and I feel that I can accomplish any feat.

This post has gone on much longer that I wanted and I'm not sure how many people are still reading to this point!  But I still want to touch on the discussion from Renee Trudeau on the importance of self care for women.  Her opening statement was a quote from Audre Lorde that "self-care is not about self-indulgence, it is about self-preservation."  I think it speaks for itself.

Wheelchair or stroller

I have been doing a lot of researching to try to find the best way of transportation for Reagan.  She is able to walk well at our house and at school because she is familiar with the setting and layout, but she needs more assistance in public places.  I think it is best that she is pushed around in those places to protect her from falling and hurting herself.

We bought her this stroller when she started school to have for times when she became too tired to walk and to be pushed from the cafeteria to her classroom.  However, she is now so comfortable at school that she walks most places and they only use it for about 30 minutes for her to rest mid-way through the morning.  I would still love to continue to use this stroller for her because it is so compact and suits her well.  But my tall girl has already grown out of it and her legs drag the ground.

Her teacher and physical therapist at school recommended we get a single jogger stroller for her to use at school  and in public (something similar to this).  The reason being that we want to encourage her to continue to walk as much as possible and a wheelchair would make it easy for her to rely on her to push her too often. That and wheelchairs are much more expensive!  My hesitation is that I don't want to buy another stroller (we already have 5 in our shed) that she will outgrow and no longer need in a year.  I do not know if it would be more sense financially to invest in a wheelchair now instead of buying a stroller now and then a wheelchair in a year or two.

I found a couple of wheelchairs online that seem to possibly fit Reagan's current needs but would also fit her needs later too.  I really like this one by Special Tomato because we could use it to go to school as well as hiking and the mall.  Also, it is not quite as expensive as a typical wheelchair.

I am adding this decision to the list of decisions that need to be made but seem too difficult so I will procrastinate for another 6 months until it is absolutely necessary!

Happy Mother's Day

This weekend has been one of my favorite Mother's Day weekends in a long time.  Why?  My Mom came to visit from out of town and we got to spend the weekend together, just me and her and my two little girls.  As I get older and especially now that I have children of my own, I am more aware that my Mom is such an amazing woman.  We talk on the phone almost daily and I really don't know what I would do without her.  She was a rock for me when we received Reagan's diagnosis.  She was in Florida the Friday afternoon that we received the phone call.  I called her immediately and could barely get the words out to tell her the news.  She got the first flight to come to Austin.
Happy Mother's Day to my Mom and all the other wonderful mother's (and step-mother's) that give so selflessly.

Morgan's Wonderland again

We took a family trip to Morgan's Wonderland last weekend.  If you are not familiar, Morgan's is a park in San Antonio designed for individuals with special needs and I can not say enough positive things about this place.  This is our second visit and we have learned so much more about how to make things enjoyable for Reagan since our first visit last year.  For example, I now know that she gets overheated very easily since children with Rett Syndrome have a difficult time regulating their body temperature.  We need to take several breaks during our stay to find an indoors area so she can cool off and escape the Texas heat that is already uncomfortable.

One of the neatest things about our trip is that we met another Rett family that was visiting from out of state.  They have twin daughters that are 20 years old, and both have Rett Syndrome.  I am pretty sure that they are celebrities in the Rett world due to their unique situation.

We ran out of time (rather some little ones were done) and did not ride the train or play in the water area.  Reagan's favorite was once again the sensory room and she also loved the carousel this time.

Not sure of the carousel at first

But quickly realized it was a lot of fun

Lauren played non-stop on the playground equipment

Sensory room

Met some horses

Swinging with Daddy

Exhausted

I see a future in sports...

Love can build a bridge

I was doing my thing at the gym this morning, getting in my groove on the elliptical machine while my ipod shuffled through songs.  I usually listen to a playlist instead of shuffle so I haven't heard a lot of songs on my ipod lately.  The song "Love Can Build a Bridge" by The Judds came on and I almost skipped it to go to a more upbeat song.  Instead the words grabbed a hold of me before I could get to the next button.  This song has a great message about love and it's powers.  I listened intently, applying that message to my personal journey.  I had to listen to it again and hoped that I wouldn't make a fool out of myself by starting to cry openly at the gym.

Reagan can not talk to me and has very limited communication skills at this point.  Yet I feel immensely connected to her and in tune to her spirit.  I feel that the love we share and understanding of that unconditional love has built a bridge over her inability to use words.  I talk to her all the time, and no she doesn't respond but the love that shines through her eyes back at me talks to me.  I am not sure if I did a good job relaying what I am feeling and how I interpreted the song.  But the bottom line is that I felt the message loud and clear this morning, love is all that matters.  Here is link to their live performance if you've never heard the song:  The Judds beautiful performance.

Colors

Around the time that Reagan was 18 months, I gave up on trying to color with her.  She didn't seem to enjoy it, quite the opposite actually, and we both would be frustrated or in tears before it was all over.  Looking back, how can I blame her for being so frustrated.  She wanted her little hands to be able to hold the crayons, she wanted to scribble on the paper like her cousin, but her body refused.  

This weekend I broke out those same colors for Lauren and pulled out Reagan's old art table that has been in a corner for at least a year.  I smiled so big when Lauren immediately took to scribbling.  Then I got sad again when I saw Reagan watching us, it seemed her eyes were curious about what we were doing and wanted to be included.  Of course she does and I need to start figuring out ways to make sure that happens more often.

I got out more paper and put her in the chair opposite of Lauren and we all colored together, me doing hand over hand for Reagan.  It was a perfect 30 minutes when it felt like everything was aligned.  The sun was shining outside, I could hear birds chirping, Lauren was alternating between tasting the crayons and scribbling on the table, and Reagan was smiling.  Life was good.  

We went outside later that day and I expected the usual from Reagan, ten minutes of tolerance followed by screaming to let me know she wanted to go back inside.  But instead she was happy and content to be outside with the family and the dogs, just enjoying the moment.  

I hope that we are seeing some of the happy and content Reagan return because we are no longer in the Regression stage of Rett Syndrome!

Education budget cuts

I have been watching the news and reading our local paper with a slight interest as everyone is discussing the statewide education budget cuts.  I did not think that it would directly impact our family in the near future since we are not teachers.  I never dreamed that our school district would cut the entire PPCD (preschool program for children with disabilities) at her elementary school for the next school year.

What does this mean?  It means that her wonderful teacher, aides and therapists that have made such a large impact on her little life in the short month since has been with them have lost their jobs.  I can not imagine how this affects their families.  It means that the children, including Reagan, are going to be transferred to one of the two schools in our district that still offer a ppcd classes.  Yeah, I guess I should not complain, at least it is still available, even if it is not easy.  The closest school that she can now attend is a minimum 45 minute car ride each way without traffic.

I am sure that this is a decision that was not made lightly, at least I hope.  However, it feels like someone has told me that education for special needs children is not important.  I feel like I have been sucker punched in the stomach and I'm not really sure to who she be on the receiving end of my retaliation.  I don't even know who to blame, not that it even matters.

I have watched before my eyes as Reagan has come out of this funk that she has been in for the past year.  My little girl that used to giggle and smile all the time has finally returned.  She is happy and glowing.  We share looks at each other several times a day where our hearts are speaking and I know that she understands she is loved and adored.  I don't know if it is just coincidental that this change for her happened at the same time that she started school and I can't say that I really care.  However, I will be a very upset Mama Bear if the transition to the new school does not go well.  If the teachers and staff do not accept her with open arms or if I no longer see that glimmer of hope in her eyes.