Week 153

We began the week excited to have Ryan's appointment with the psychiatrist.  Unfortunately, the morning of the appointment, the receptionist called to cancel the appointment.  It was the morning following the snow/ice storm.  Many schools were on a 2 hour delay.  I was home with the kids, about to pack them into the car to take them to daycare so that I could head to work and the phone rang.  I was so annoyed.  I told the receptionist that the roads were fine and the buses were already out there picking up the high school kids in my neighborhood.  How could the doctor cancel an appointment for the afternoon when she had 5 hours to make her way into the office?  They told me to call back and reschedule.  Yeah right!  So with the psychiatrist appointment cancelled, and the psychologist appointment cancelled just a few days before that, we were feeling pretty defeated.  In the meantime, a family friend had recommended another doctor in Newburgh who comes highly recommended.  He is on vacation but said that he would be willing to meet with Ryan when he returns.  I've left a message and am hoping to hear back very soon.


Among the many recommendations we received, one was for the Autism Program at Yale.  They have a Child Study Center that is considered one of the best in the country, where over a two day period a team of specialists interview us and work with Ryan to determine his strengths and weaknesses.  At the end of the two days we are provided with a pile of reports that we can use to help Ryan get the help he needs in school and within our community.  I spent time researching the program this week and speaking with an individual from the Yale Child Study Office.  We were able to make an appointment for Ryan during the first week in April.  But after further consideration, Phil and I cancelled the appointment.  With all of the other avenues we are pursuing right now, we didn't want to jump into this and overwhelm Ryan.  It is a lot of money, out-of-pocket, to spend ($5500) for reports similar to what we may already receive from the professionals currently working with Ryan.  I'm sure it is the name "Yale" at the top of the reports that may open a few more doors, but at the moment we seem to already be inundated with information.  It is not the lack of information, it is "What do we do now with this information?" that has us stumped.  The Yale program is something that we can wait a few months for and see if it is necessary at that time.  This will give us more time to save up the $5500 since much of our current resources we are currently investing in appointments in the psychiatric field.  It is astonishing how many doctors in this field do not participate in insurance! 


Autism Program at Yale

Jack turned 8 months this week.  Here is a picture of Jack with Ryan and Julia.

Towards the end of the week Ryan had a huge meltdown that lasted about 20 minutes.  My parents and brother were here.  They said he was great all day and then something set him off and he couldn't control himself.  It happened just as I had returned home from work on Friday.  It was already a bad day as I had met with the Assistant Superintendent in the morning and found out that I was one of 67 teachers in my District being laid off.  As of right now I do not have a position for the 2013-2014 school year.  That may change depending upon the budget in May, but there are a lot of factors in play right now.  I can't believe after working for a district for 10 years that there have been so many cuts that I am at the bottom of the list on the chopping block.  How do you continue to run a decent education program with that many layoffs? After a rough day at work, walking in the door to Ryan crying and screaming and throwing his body around was just a lot to handle. 

And Ryan's skin is getting progressively worse.  He is obsessed with scratching it and he is so itchy it is further upsetting him.  We took him to the pediatrician and she gave us two topical prescription medications; she said his eczema and his scratching, has caused an infection on the skin.  After just one day of use we already noticed a difference and Ryan said himself that he is less itchy.  Here is a picture of his scaly, scabby leg the night before we took him to the pediatrician.

On Palm Sunday we did a little early celebration of Easter with our families.  The kids had an Easter egg hunt outside and had a lot of fun playing all together.

Don't forget that April 2nd is World Autism Awareness Day and homes and buildings around the world will be lighting it up blue. Get those light bulbs ready! Our light bulbs are ready to go for the evening of 4/1!  And please remember to wear blue on 4/2! 

DC

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 150- Prayers Needed

Please join our daily prayer chain...

Heavenly Father,
We adore you, the Father of us all
We ask you to assist those families with an autistic child
Give these parents wisdom and angelic help in their care for their children
Help the child's siblings to be patient and to grow in self-giving love
Grant these families your special support and give them friends who understand and love them
Most merciful Father,
Give light to scientists and doctors so that they may find a solution to autism
Through Christ our Lord, Amen.

My mom sent me this prayer.  She heard it last night and copied it down.  It comes at a perfect time, as Ryan continues to struggle with his emotions.  We're seeing behaviors that we have not seen since before we began the GFCF diet and treatments for Ryan. Family members that see Ryan often have commented about how "off" he seems and how violent and anxious he has become.  However, it is almost as if he has a double personality.  Caring Ryan makes his way out at times and it is so nice to see.  Over the weekend we were at a birthday party and a little girl fell and Ryan ran over to her, helped her up, and said, "Are you okay my little friend?"  This is the same boy who in an instant became angered doing his homework this week and jabbed me in the face with his pencil.

Ryan's increasing violence towards us has sent us into a panic.  It is scary to watch him meltdown, punch things, scream at people, throw things, and reach for knives because he says that he wants to stab us.  This is not the Ryan we know and love!  This is not our sweet, gentle little boy.  Something is wrong!  And what seems like minor things are what triggers his biggest episodes.  His emotions are in overdrive and we need professional help to get to the bottom of this.  We used to be able to help him cope during most meltdowns, but now more often than not, we are unable to help him.  Our bag of tricks that used to get him to calm down and put a smile on his face, no longer work.  They only irritate him more.  We can't reason with him.  

On Friday night I contacted his developmental pediatrician, Dr. Cowan, who was away at a conference but read my email and called me back almost immediately.  He feels Ryan may need to begin an anti-anxiety medication. He said it sounds like Ryan is dealing with something big inside.  It can be a mix of school, peer relations, hormones, as well as other things. He holds himself together all day at school and can't control himself any longer once he gets home.  School personnel are working with us to secure outside counseling, and a meeting is being set up to revisit his counseling sessions at school and add individual counseling sessions to his IEP.  Last year we were denied individual counseling as part of his IEP and instead given group counseling with his peers.  We have an appointment set up with  a therapist who specializes in working with children with special needs, but unfortunately that appointment is still two weeks away.  We are working on getting a psychiatrist to see Ryan.  Any suggestions of someone in the Dutchess/Putnam area, please let us know!  We're waiting to hear back from his regular pediatrician for recommendations, but if she doesn't have any we're heading into this blind.  

We're also trying some new supplements as per Dr. Cowan's suggestion, including L-Theanine which is an amino acid and may help curb anxiety.  He also suggested Ryan take a bath in Epsom salt since the magnesium may have a calming affect on him.  Ryan took one on Friday night and enjoyed it so much that he asked to do it again on Saturday and Sunday.  I pray that he has a good day at school tomorrow.  We will, as always, continue to keep everyone updated.  And I ask again that you join our prayer chain!

DC