Catching Up

So, it's been a long time and once again, a lot has happened in that time.  Elise has been making her slow, steady progress.  The best thing is that I no longer fear losing her.  She's in this world and she's determined to stay.  But what a lot of work there is for her to do.  It's exhausting for me, so I can't even begin to imagine what it is like for her.  That child is amazing.  If a typical had half of the persistance, determination and dedication that she has, his potential would be boundless.  Her potential is so much larger than most can see, but it probably is limited because she has so many seemingly insurmountable obstacles to conquer.

We have decided to continue with Elise's neuropsychiatrist and dropped the doctor that I was so excited about seeing.  Hubby was so suspicious of him and his office staff was overly pushy.  Something just didn't seem right with him.  I wanted so badly for him to have the answers for us.  He's so passionate and he said everything that I wanted to hear.  I believe that he really is helping some families.  It just wasn't going to be right for us because we have learned not to be pushed into anything on this journey.  We need to be free to evaluate and determine what is right for Elise, not be told what we have to do and held to doing it right away.  That style just doesn't work for us.  Unfortunately, there are a lot of snake oil remedies for helping autistic children right now.  Do I believe that they work?  Absolutely!  Different ones help different children.  Do I believe there are those who are intentionally taking advantage of us desperate parents?  Actually, I really don't believe this is intentionally happening.  Maybe that's naive, but I believe most are trying to help.  However, the answer is not going to be simple and the answer will vary greatly for each child.  Remember, if you know one person with autism, you know one person with autism.  That was kind of a tangent...bottom line is that we chose to leave his practice.  I'd still like to explore the Valtrex option with Elise's neuropsychiatrist.  We'll have to ask about it at our next appointment.  Some things that other doctor said sounded so right for Elise.  We just needed to trust him and we really didn't.  It just wasn't a good fit.

Elise is actually doing great.  She's been super sensory seeking right now.  She loves to use the rocking horse that Grandpa built and will spend quite a bit of time on it if we don't remove her to do something else.  Sometimes we get her off the horse and within five minutes we'll find her in the glider chair rocking.  She's also wanting to spend long amounts of time in the swings at the park.  It's a bit overboard and we're trying to address the problem.  I'm curious whether she's receiving adequate occupational therapy from the school.  It's probably not quite what she needs as their focus is more on enabling her to be able to participate in class vs. be at her optimal in all situations.  We're considering returning to her old OT who helped her so much, but it would either be out-of-pocket expense or minimally covered by insurance.  One more thing on the list of things I need to figure out.

The sounds Elise makes now are amazing!  About a month ago, Elise's speech therapists began working with the hard G & K sounds.  It was incredibly difficult for Elise.  She started with only saying them with manipulation techniques by her therapists.  By this week, I can get her to use G and K.  I have to prompt her to make the sounds and often have to tell her to watch my mouth as I overemphasize the sound.  She'll look & watch me and then she'll do it!!!  It's amazing how quickly she learned to do something that is so hard for her.  She makes me so proud.

Elise lost two home consultants within 2 weeks.  She only had a team of 4, so it's a very significant loss.  She also lost the PhD in charge of her case back in January.  Needless to say, she has not been having all 30 of her hours per week fulfilled lately.  We somewhat considered looking into a new agency, but Elise is so far into her program with them, that leaving now seems detrimental.  For Elise, we ALWAYS have to go through this 2 month period or so of whoever she works with not realizing how much she really knows.  It makes me hesitant to make changes for her because we lose so much time during that 2 month period.  Elise lives up to expectations.  If expectations are set too low, then she'll achieve less.  Too high, she understandably gets frustrated.  It's a balancing act and her current agency has learned to balance it well.  We're hopeful that her hours will pick back up to the 30 hours per week beginning in May.

I mentioned Elise's sensory issues increasing recently.  She's also been having a difficult time with her sessions and having a return of some negative, non-productive behaviors.  We realized that this has happened every spring for her.  In fact, last spring was beyond horrible and it was when we first turned to Abilify for her.  A used to have terrible behavior in the spring (still does, actually).  For him, allergy medication helped him to behave better.  He tests as having mild allergies, but taking the medication in the spring improves his behavior tremendously.  We decided to try giving Elise some Claritin.  It worked.  She improved very quickly.  She has not indicated allergies, but it seems that she must have them.  Thank goodness A is similar or we would never have thought to try allergy relief for her.  It's not like she's running around sniffling or anything physically obvious.

Speaking of allergies, we're also totally convinced now that she does not process or handle dairy well.  We've been lax more often and have been allowing her to have cheese, such as quesadillas & grilled cheese sandwiches.  EVERYTIME we do this, within the next few days, she suffers from constipation.  She also gets more fussy & tantrums more.  While we love the flexibility of being able to give her cheese, it's something we have to abandon for her.  She just does not tolerate it well.

We are buying an IPad for Elise.  We're really hopeful that it'll foster her communication skills.  She's used it on occassion with her private speech therapist and she has taken to it well.  I'm very excited to see what kind of opportunities this will open for her.  She's also now looking at letters and applying the correct sounds to them.  We're actually starting to realize that she's getting the concept of reading.  Reading will also open a lot of doors for her.

Basically, things are going great for Elise right now.  The move to our new home was difficult for her, but she got through it.  Her school situation is going well now.  However, she will have to have a new classroom next fall as her teacher is retiring and there will no longer be an aphasia classroom offered at her school.  This requires yet another IEP.  That, my friend, is a whole other long story for another day...Good night for now.

Saying Goodbye

We have moved into our new home. Yesterday, I finished cleaning the old house and said goodbye to it. It was actually a bit emotional for me, so many memories there. It's where we lived when Elise & B were born and we moved when A was only 16 months old. We are enjoying the new home and it'll be a great move for us.

****This was actually started on 3/13/11, but I never finished it and I forgot to publish it until now...****

Thoughts of the Day

I've neglected writing for a long time. I'm still going to neglect again today, but I did want to reprint a poem I've been thinking about lately. It's been ringing true a lot lately as I'm finally coming around to total acceptance of Elise's highly probably lifelong condition and struggles. I read this poem when we first started on this journey. It's written by someone who has been there and it's beautiful. I'm just having a very hard time right now loving being in Holland because I really wanted to be elsewhere.



Welcome To Holland


by

Emily Perl Kingsley





I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay.



The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



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