Week 152- The Neuropsychologist

It was an up and down week with Ryan.  On Friday, Ryan was very excited to come home and show us his 100 on his spelling quiz.  Now that he is being pulled out again with the special education teacher his grades have gone up.  If you recall, they stopped taking him out of the class to take his tests and we noticed a sharp drop in his grades.

On the behavior front, it was OK.  His behavior was manageable at home and he did not have as many of the huge meltdowns that he was previously having.  However, on Thursday we found out that Ryan had punched two different boys in the face at two different times throughout the school day.  The first one was because Ryan and another boy had an argument in the hallway.  The argument was about if the other boy said a bad word or not.  They argued back and forth and Ryan hit him in the face.  The second time was in the cafeteria and a different boy took money from Ryan (his lucky coin) and would not give it back.  So instead of telling a teacher, he hit the boy in the face.  We are trying to get through to Ryan that you cannot break a rule to enforce another rule.

With all of the phones calls that Dawn has been making to different doctors, we were supposed to have our first one on Friday afternoon with the psychologist that Ryan's school social worker recommended.  We prepped Ryan, sent notes into school about getting out early, we put in to get the time off from work to bring him and what happens?  She cancels at the last minute!  I wonder it we should charge her the 75 dollar fee for not cancelling within 24 hours?  It was probably for the best anyway.  Dawn did not get the best feeling from this person during their phone conversation and it took forever for this person to call us back to get this appointment in the first place.  And even after hearing the urgency of the situation, the earliest she could fit us in was two weeks away.  We found a different psychologist (Dr. Field) that was recommended to us by one of Dawn's former student's mother.  Dawn called him and was able to get an appointment within 2 days.  Ryan met him on Saturday, had a good time in his office and when the session was over gave him a hug good bye.  We are going to stay with Dr. Field for now and Ryan is going to see him once a week. Dr. Field gave Ryan some interesting homework.  He told him that once a day he is to have a planned meltdown and to make it as close to a real meltdown as possible. Ryan did so on Saturday and Sunday (with reminders and prompting from us).  He found it very silly.  Maybe that is the point, to make Ryan realize how silly he looks and feels spinning on the floor kicking his legs. 

Another one of Dawn's former student's mother who reads our blog thought it would be nice to make us dinner. This is someone who has followed Ryan's ups and downs for years and has become a close friend to our family.  Below is the picture of what she made for us that evening and the menu that she made.  We are still eating the leftovers!  This is someone that has really reached out to us and has been a good friend to Dawn.  I cannot thank her enough for all of the support and encouragement that you have given to Dawn over these past few months.  It has meant a great deal to our family.

Our feast.

The Menu

We are in the process of filling out paperwork for OPWDD (Office for People With Developmental Disabilities).  Dawn has been making calls to our regional office and with a great deal of help from several friends on Facebook, we are on our way.  It is mountains of paper work and we have been extremely fortunate to have people willing to email us and spend over an hour on the phone walking us through the system.  For those of you that have reached out to answer our questions or to just say that you were thinking of us, we cannot thank you enough.  We will keep everyone posted on whether Ryan qualifies for services.  It may take a while to get the paperwork submitted since we have to wait for updated doctor's notes as well as new behavior form results that the school needs to complete and process.  Dawn is trying to devote time each day to work on all of this, but being back at work has made it difficult to have a free moment to do so.


Another reader of the blog, (another mother of one of Dawn's former students) sent Dawn several messages of encouragement.  Here is part of one of the messages:

"...was at a a training at work the other evening and the agenda was on a documentary "Different is the New Normal." It was about a young boy who lived with Tourettes and the struggles not only he went through but his entire family. It was a very long journey....very difficult at times but in the end he developed into an amazing young man. At the end of the documentary his Mom explained how if she could just have been able to know from when he was little what an amazing young man he would grow up to be, it would have been so much easier for her. As parents it is our fear of the unknown that panics us. Keep your faith. It will get you through."

So true!  We constantly worry about Ryan's future, and it is the fear of the unknown that panics us, but also keeps us working hard to help him.


Since today is St. Patrick's Day, here is a picture of Jack all dressed in green.

Jack's First St. Patrick's Day!

Ryan has his first appointment with the psychiatrist on Tuesday.  We're hoping that the upcoming storm does not change these plans. 

Happy St. Patrick's Day!


PC

Week 151

I want to begin by saying "Thank you!" to everyone for helping us through this past week.  The prayers, the emails, the phone calls, the texts, the hugs at work, and the offers of help, are all much appreciated.  With help, we were able to secure an intake appointment for Ryan with a therapist this Friday and another appointment with a psychiatrist next week.  We're still making calls and waiting for return calls from other doctors that were recommended to us.  This journey is far from over so we are keeping all of our options open. 

It was an overwhelming week trying to make and take phone calls with the few free moments I have during the school day.  We kept in close contact with Ryan's teachers and social worker at school.  The staff in his school has been very supportive.  With their help we were able to modify his IEP for him to get 8 individual counseling sessions between now and the end of June, and modify his homework.  For the most part we were able to get Ryan to complete most of his homework this week.  I think that is the time of the day that Ryan (and us) need the most help.  For anyone it can be overwhelming to come home from a long day at work and have to deal with making dinner and completing an evening routine of homework, bath, and bedtime.  Ryan's opposition to doing these things, and his constant bickering with us and Julia, is beyond frustrating and exhausting for us.  And I'm sure it is even more frustrating and exhausting for Ryan.  He is awake by 6am, out of the house by 6:30 am, at daycare for 2 hours, and at school for another 7 hours. He is expected to hold it together all day, while performing tasks that he finds "boring" and difficult.  Then he comes home, and we expect him to continue to do tasks that he finds "boring" and difficult.  As the work becomes more challenging and demanding, I fear Ryan will continue to struggle.  And this is not the same Ryan; there is something different about him these past few weeks.

One of my administrators at work offered to help me complete paperwork for assistance with Ryan during his hours at home.  He is the special education administrator in our building and knows a lot about this kind of stuff; he said there is a homework program out there where college kids come to work on homework with children with Autism.  I didn't even realize there was such a program.

As I mentioned before, this journey is far from over.  There is a lot of work to be done, and issues to be addressed.  There is a lot for us to learn, and resources for us to uncover.  There are questions upon questions to be asked, and I pray that there are answers waiting for us.

There were a lot of struggles with Ryan this week, but there were also some silly and fun moments.

Getting ready for St. Patrick's Day!

Having fun with our glasses from nonna.

Ryan focusing on putting together his project from our neighbor, Carol.

Ryan's St. Patrick's Day gels from Carol.  He hasn't lined things up like this in a long time.  He usually places them randomly on the window.  Why is he categorizing them and lining them up all of a sudden?

Happy Jack.  Unfortunately Jack is sick again.  He has a terrible cough and runny nose, but he is still smiling!

DC

Week 100

One hundred weeks...WOW!

Ryan's bottom tooth has been loose for about a week now.  I picked him up after school and he was ecstatic to tell me that his tooth fell out.  He was equally excited to leave it under his pillow for the tooth fairy and he commented, "I hope she brings me a coin or dollar because she lives in the sky and has a lot of money." 


















The next morning Ryan was thrilled when he found money under his pillow instead of his tooth.  Here's the video of his reaction:
A Visit From The Tooth Fairy

One of my former students asked me if she could interview me about Ryan, so that she could write an article about him and Autism in her school's newspaper.  She recently sent me her write up in a Word Doc and gave me permission to share it on our blog.  Unfortunately I haven't figured out how to get it embedded into the blog yet.  I'll keep trying some different things because I would like you all to read it; she did a great job!

This week I went for my Anatomy scan, and let me first say, we did not find out the sex of the baby and do not plan to.  In fact, we're not going to settle on a name until the end as well, and will keep that a surprise too.  Here are a few photos from the ultrasound:

 I need to go see a specialist tomorrow afternoon because the ultrasound showed some spots developing on the baby's heart.  Please say a prayer!

What a great St. Patrick's Day weekend.  The weather was gorgeous and we were super productive.  The kids stayed outside all afternoon Saturday playing and helping us clean the cars and clean out the garage.  They even spent some time jumping.

We ended Saturday with my brother's family coming over for a corned beef dinner.  Here's a photo of our little Irish girl:

This morning I walked into Ryan's room and to my surprise this is what I found:

Without asking him to, Ryan made his bed this morning.  This was a first!  He wasn't even looking for recognition because he didn't come to tell me that he did it.  But when I saw it on my own and praised him for it, he was proud!

Another gorgeous weather day on Sunday with a visit from friends of ours as well as Grandma.  

The kids enjoyed their bubbles from grandma.  They continued to play with them the rest of the day!

DC