1st grade - done!

I can't believe it has been so long since the last time I posted anything on the blog.   My son just finished first grade and it was a success!  I think I spent as much time at the kid's school this year as the students!  The first couple of weeks were a bit overwhelming for my son (he required a nap in the afternoon - usually taken in the nurse's office) but he soon got used to the schedule.   It made a big difference that he had an aide with him during the class day.  At the start of the school year, he had an aide for almost the entire school day but by the end of the school year the aide was there only briefly in the morning and in the afternoon (when he was more fatigued). 

It is truly amazing to see how far my son has come since the beginning of the school year.  You know when you get all the paperwork, notebooks, drawings, etc. that your kids bring home the last week of school that you just pile up until you have the energy to go through it all?  Well, I started going through that pile (just a little) this past week.  My son had one writing journal/folder that he used the entire school year.  The difference in his handwriting at the beginning of the year versus the end of the year is just incredible.  It is two different handwriting styles. 

Here is a what my son's handwriting looked like at the start of the school year:

You can tell that the writing is more light and that he had problems with word spacing as well as the size of his letters. 

Here is what my son's handwriting looked like by the end of the school year:

The contrast is amazing, right?!  The words are darker which means he is applying more pressure on the paper from his pencil and holding his pencil correctly.  There is the appropriate amount of space between each word.  He learned how to properly capitalize (for the most part) and write in lower case.  The size of the words on the page fit the space.  The sentences are coherent instead of a bunch of words just written on the page with an occasional correct phrase.  He still needs work on starting each sentence with a capital letter and making the period a little more defined but I have to say much improved.  Definitely a exciting moment for mom and dad to see the difference as we flipped through his notebook! 

The difference is even more apparent in his writing worksheets.  The first month or so he had papers that had these big line and space to write words and again he barely fit three words on a line and there was no spacing between words, etc.  By the end of the school year, the space to write was the size of wide ruled notebook paper and his writing was the appropriate size and space.  All I can say is I am very proud of how much he has improved on his writing this school year!  His OT was also thrilled to see the difference.  She reminded me of how he used to have problems with his lower case "g".  He used to write it with a circle and a line attached to the top of the circle that came straight out and then went straight down.  His OT was so happy to see how he can write it now - correctly!

This improvement that is reflected in my son's writing, is also the same improvement he made in his reading and to a lesser degree his math.  My son is not a fan of math.  He also improved in his artwork and music participation.  

This was also a reminder to me to not set my expectations too low.  I was really nervous and frankly scared that my son would not be able to keep up with the rigorous curriculum and challenge of a full school day but he proved to me that he was and is able to keep up with the rest of his classmates.  Second grade will be another challenging year but he will be more prepared for all that will come!

End of summer and the start of school

I ended my last post stating that we needed to be more involved in the down syndrome community after the re-determination process.

Perfect timing, the National Down Syndrome Congress had their annual convention in Phoenix and we were able to attend.  It was a great eye opening experience with a lot of information for parents and advocates of those with down syndrome.  My husband and I both agreed that it was definitely worth our time and a great experience for our entire family.  I will say briefly that the seminars about inclusion in the education system opened our eyes.  We realized we were actually doing the opposite of what many families at the conference were fighting for.  We had our son registered in the special education program in the public school system but worked it so that he would be put into the general education classroom as much as possible.

Let me back track a little.  Prior to the conference we had been trying to decide where we would place our daughter for the next school year.  An opportunity to attend another charter school had opened and we considered switching her.  While filling out paperwork at the new charter school, one of the administrators introduced himself and started talking to both kids.  He asked why we were not also registering my son.  I explained that he had special needs, specifically down syndrome.  He scoffed at me (in a nice way) and said there was no reason why my son could not also attend the school like his sister.  He further added that the school has students with IEP's and handles students with IEP's all the way through high school.  He encouraged me to submit an application for my son and even went so far as contacting the Special Education Coordinator and having her contact me personally.  Ultimately it was his encouragement and his belief that my son could do just as well in their charter school that encouraged me to also submit an application to the school where my daughter was currently enrolled as well.

As a sibling my son got admission into the same charter school as my daughter.  We then met with the school's special education coordinator and her first question was why my son wasn't already enrolled?  She was so confident that my son would do well that I was really surprised and overwhelmed by her enthusiasm.

In the meantime, we attended the convention and afterwards my husband and I reached the same conclusion.  We should do what we can to make sure our son gets a more inclusive education and ultimately that meant withdrawing him from the public school system and formally enrolling him at the same charter school his sister was attending.  My son was waitlisted at the new charter school so we ultimately only withdrew my daughter.  In the end, one of the deciding factors for us was the fact that I would be able to volunteer and be in the classroom with my son at the current school versus the new charter school, which had a closed campus - no parent volunteers allowed.

It was so exciting for my son to be attending the same school as his older sister and a huge milestone for us.  I admit it was emotional for me because I had previously resigned myself to the fact that my kids would never be at the same school and that their education tracks would be different.  Not anymore!  Of course, the learning curve for my son has been and will continue to be a steep one.  He has a lot of homework (for him) each night versus none the year before.  Plus we are working as hard as we can to keep him just a little ahead of the rest of the class in some areas to give him a chance to stay at the same level as his classmates.  It has not been easy but he is doing well.  Academically, it has been pretty challenging.  He has spelling tests of 30 words a day (only the last 5 count) but that is 5 more than he had last year.  He is reading a lot more and math has been the most difficult subject.  There is also science and history.  However, it has been great working with the first grade teacher and the special education team.   I understand now that including him in a regular class makes him strive to work harder and raises our expectations of what he can accomplish.  Obviously, as the curriculum advances, it will be more challenging for him but at least we have his sister showing him the way and she is a great example. 

Eligibility for services - follow up

Sorry for the delay in posting again but the redetermination process was really frustrating, draining, upsetting, exhausting, etc.  I really did not want to deal with it or talk about it because I got so worked up every time I thought about it but now that there is some distance I think I can handle it. 

My last post ended while we were waiting for the official letter of termination to arrive.  Unlike the week promised by the support coordinator supervisor, the official letter for termination of services did not arrive until 2 weeks or so after my conversation with him.  During this entire time, I had been in frequent contact with the supervisor and he kept telling me that he did not know what was going on  because another section of the department was handling the redetermination process.  I was naive and believed him so I was shocked to see his signature at the bottom the letter terminating services.   I really felt like I had been deceived because it did not make any sense to me that the supervisor would sign the letter if my son's termination of services was "handled in another department".  I did not think I could have gotten more upset than I already was, but I definitely did.

Once we received the letter, we met with our attorney as soon as we could.  We also stayed in constant contact with our advocate.  Our attorney contacted the agency on our behalf to let the agency know that we were filing an appeal to the termination.  During this period, I also got in contact (through a mutual friend) with another mom of a son with Down Syndrome and she suggested that when we file our letter to the agency stating why my son's services should not be terminated, we also include letters from his therapists and our pediatrician supporting our position. 

One thing I learned through this process is we do have a very supportive network.  The therapists, without hesitation, agreed to write letters on my son's behalf.  Our pediatrician also agreed to write a letter on my son's behalf advocating why he needed to maintain services.  Interestingly, our pediatrician asked me to provide an initial draft of a letter and thankfully a dear close friend who does pediatric social work was able to help with the letter.  I was able to pass along all the letters to our attorney who also found case law to support our position. 

At the same time we had to take our son to get a psychological evaluation that would hopefully provide results favorable to our position.  Again, it was through this new network of advocates that we were able to find an doctor who happened to have an availability in the critical short time frame under which we were working.  The anticipation of the evaluation was brutal.  I tend to stress and worry but I don't think I have had this type or degree of stress ever in my life.  We could only hope and pray that the doctor understood our position and why we were having our son tested.  And of course, we had to hope that our son did not do too well on the testing.  Can I say that really sucks.  The few times, I have had to hope that he does not do well were just awful and it does not get easier over time.  Really, really, really hard and counter intuitive to every thing I have to root for my son to not do his best and even to fail because that will help him more than doing well.  It is just the WORSE feeling as a mom.  I could say more but I can feel myself getting upset just thinking about it so I'll stop.  In the end, the test results supported our position for the continued need for services.

Once we filed our appeal all we could do was wait.  Amazingly (and I say this with as much sarcasm as I can muster), our newly assigned support coordinator, called us while this was all going on and asked if he could transfer my son's file to another division because, you know, the zip code that he was covering was getting too big and they decided to split it up so my son could have a new support coordinator (who had no clue what was going on)?!  We shot down that request in writing as quickly as we could.  There was no way we were going to let my son's file be transferred to someone new so that it could get lost in the shuffle.  The support coordinator accepted our decision and so all we had to do was wait. 

About 3 weeks after we filed our submission, we got the response we had hoped and prayed for.  Our son's services were reinstated.  Just to be clear, there was no gap or stoppage of services while we were filing the appeal - the government does not take away services immediately but if we had lost then the services he was receiving would have eventually had to stop or we would have had to pay for them out of pocket (very expensive).   It was such a huge huge huge relief.   

In the end, in spite of the painful process, I learned a lot and the biggest thing I learned was that I needed to be more involved with the Down Syndrome community because there is a lot I do not know. 

IEP and eligibility for services

I had originally planned to write this post about my son's annual IEP meeting.

I hate that I have to feel like I need to steel myself to fight for his services at school and that we are not really meeting with his school "team" but that we (his parents) are the only ones really advocating for him.  Here, in our state, the IEP (Individualized Educational Plan) deals only with the services he will receive at school for the upcoming school year.  That means first grade this fall.  Yikes!  Time goes fast.  He only receives speech and occupational therapy and I figured it would not be that big of a deal to keep services going but again the therapists proved us wrong.  In a nutshell because he was doing well and meeting goals they wanted to lower the number of hours for his services as per school guidelines.  That may not sound so bad but to us it is totally counter intuitive.  Our position - shouldn't he at least maintain at the current level so that he doesn't fall behind as each school year he faces more expectations and school work becomes more challenging? Each year is presumably a little more difficult than the current year so our feeling was that the therapies he is receiving should match that level of difficulty.  Eventually, we were able to persuade the therapists to at least maintain his current therapy level.

We thought things were on track once we finished with my son's IEP meeting.  Not so.  Some time afterwards, I don't remember when now but not long after we received a call from our support coordinator supervisor.  The purpose of the call was to inform me that the state agency was starting the process to terminate all services (therapies) for my son.  I also learned that we would be receiving a letter to inform us of this officially within the next week. To say that the phone call threw me for a loop is putting it mildly. 

To back track a little, at the end of last year, I was informed by the same person that the agency was going through a redetermination process for my son because that is what the agency does when a child turns 6.  I was told that there really was not anything to worry about and the support coordinator supervisor agreed with me that my son should not have his services terminated and that there should not be anything to worry about.  So. Wrong.   Note to self, take anything the state agents say with a grain of salt and get it in writing. 

After hanging up with the supervisor, I just put my head down on the table and cried.  I was so upset that this was happening and that we had received no warning!  I had even followed up with the supervisor at the end of January to ask what was going on with the redetermination process but was told there was no update.  After trying to calm myself down, I called my husband and informed him of the phone call and cried some more.  But I knew I could not spend the entire day crying (which I did anyway) but I also had to try and get as much guidance and assistance as possibly.  I started calling different non-profits that I was aware of and explaining what was going on and just trying to get someone to help me.  I also reached out to a friend of mine who is an attorney and he totally came through and was able to connect me with an attorney who works with special needs and situations exactly like the one we were facing.  The special needs attorney let us know even before we spoke to her that we had 35 days to appeal the termination of services.  I was very thankful because we were not aware of this. In the meantime, my husband was able to connect with a special needs advocate because he spoke to a co-worker whose husband happened to work in a non-profit for special needs and knew advocates.  We definitely felt grateful for the timing of everything and the advocate is still working with us today.  The day was a total blur but by the end of it I felt much better because we had already started the process to build up a team to help us fight the termination of services.   All we had to do was wait to receive the letter and that would let us know what the state agencies position was and why they were terminating services.  We had to wait longer than we expected. 

Turning 6

My little boy is 6!  I cannot believe he is no longer a baby.  Sometimes I feel like he is still so small and fragile and other times (when he is running around the house screaming like a pirate) I wonder at how he has become so big.

This year my son was able to celebrate with friends at school.  This meant he got two birthday celebrations.  First, with his classmates who are also in special education and then with the general kindergarten class that he is a part of.  He really really enjoyed getting sung to twice and getting to eat birthday cupcakes twice!  My son is kind of funny.  The only time he will eat cake (in any form) is for his own birthday or at a birthday party.  Otherwise, if you offer him cake he will decline.  He really does not like sweets and would prefer a bag of potato chips or veggie straws anytime over something sweet.  He also got a special birthday pencil and note from the school principal, which he also was very excited to show me.

After my son celebrated his birthday at school, we had planned to have a birthday party for him.  This did not happen because this year, just like last year, my son got sick after his birthday.  Literally the next day he was running a fever and coughing.  He ended up with an ear infection and croup!  So he ended spending the rest of his birthday being sick.

In the end, we were able to celebrate his birthday a few weeks later.  He really enjoyed himself and again ate a piece of cake (which he refused to touch after we brought the leftovers home).  He definitely knew it was his birthday and relished every second of it.  He had a big smile the entire day of his birthday party.

Because my son got sick, we also had to delay his well check visit (again) this year.  I think we managed to make it into the pediatrician's office about a month later.  We got really good news:  my son continues to grow on the pace the pediatrician would like.  In fact, my son grew 2 inches and gained 4 pounds - all in the normal range for boys his age!  Yay!  We were very happy with this news because that meant that we would not have to talk to an endocrinologist about growth hormones since he is growing at a normal pace.  We pray that my son will continue to grow and there will be no need to see a specialist.

Of course, we had to deal with the yearly blood draw.  I hate this.  It is so painful for him to endure - this year they had to draw blood from both arms because the first arm they could not get enough blood to fill the vials.  My son is so exhausted from crying after these appointments.  The bad news is that we have to repeat this procedure again, not in a year like normal but in 6 months because one of the readings for his thyroid is 1/100th off or something like that.  The pediatrician believes the difference is because of the trauma of the blood draw but wants to be cautious and make sure there is really not an issue with his thyroid.  I am really hoping this is the case, otherwise we will have to see a specialist.  But, at least for another 6 months I do not have to worry about this!  Hopefully, we can get into a facility that does more pediatric blood draws so the procedure will not be as traumatic for my son.  Otherwise, everything else looks good and we can enjoy how my son is improving in his pencil grip at school which is leading to him actually making clearer letters of the alphabet and watching him interact with his new friends at school and just learning more each and every day.

First Day of Kindergarten

It has been two months since the first day of school!  I cannot believe how quickly time has flown.  I was sure I already blogged about my son's first day of kindergarten but clearly that was all in my mind. 

The first day of kindergarten was very exciting for my son and for all of us.  I thought for sure that I would shed some tears and get emotional as my baby trooped off to his first day of kindergarten but that was not the case.  There were tears and emotions, just not exactly the one's we expected!

Since this was a new school we were not sure about how early we should get to his school but figured a half hour ahead of time would be sufficient.  Boy were we wrong!  By the time we got to his school, there was no parking to be found and so we were left to park on a dirt road a quarter mile from the school.  It was a super hot day since school was starting in mid-July.  It was well into the upper 90's by the time we parked and started walking back to school.  Along with my son's backpack we also had school supplies and snacks that his teacher had asked us to provide on Meet the Teacher night.  My son tired quickly so my husband ended up having to carry him most of the way to school.  By the time we actually made it onto the school grounds we were sweaty and tired and both my son and daughter were not happy. 

We then had to figure out where to drop off my son.  We first headed to his classroom.  The door was locked and the sign posted on the door directed us to the playground.  We were so exhausted at this point already!  Thankfully, an aide happened to open up the classroom door as we were standing outside trying to figure out what to do with the shopping bag full of supplies and relieved us of this one big bag.   We then continued our trek to the playground.  We also saw some water fountains that were located outside and our daughter was able to drink from the water fountain even though the water was warm.  I have to explain that my son's school is an open campus.  There are no enclosed hallways.  The school opens to one big central courtyard and all classrooms exit into the outdoors.  There was no relief from intense summer heat "inside" the building.  Of course the classrooms are all air conditioned but as they were all locked we were not able to cool off.

We found our way to the playground and located my son's teacher.  We thought this would be a quick stop before the kids headed to the classroom but unfortunately that was not the case.  We eventually found out that my son's class was the last to line up and go into the classrooms.  For the first day of school that meant that we were outside for almost an hour before they went into the classroom.   By that time, my daughter had managed to get stung by a bee and both my husband and I were just a little bit short on patience due to the fact that we were out in the heat for so long. 

In the end, we still managed to get some good pictures of my son and daughter (pre-bee sting) smiling and playing around on the playground as well as  pictures of my son in his classroom.   The best part of the morning was definitely making it into the kindergarten classroom where we knew my son would get a chance to cool down and enjoy his day. 

Ultimately, I was not overcome with emotions - except relief that I could get into an air conditioned room and cool off!  My son was a true trooper and waved us off like a pro.  He has continued to excel and amaze us with what he is learning so far. 

The last day of preschool

Okay, my son starts kindergarten next week and I am just now sitting down to write about his last day of preschool.  The six weeks since he finished has flown by!  Throw in a couple of out of town trips and, well, that is why I am writing about his last day of preschool now.  I figured I better get this down before he actually starts school again.

Well, all I can say is my son's last day of preschool was pretty rough, for me that is.  My son faced his last day of school with the euphoria most kids have entering their last day of school.  For the first time he understood that he was going to be heading for a break and he was definitely excited! 

Mommy was not as excited.  First, I had to get through the day without becoming a blubbery mess.  I was much more calm when I dropped him off than when I picked him up.   When I picked up my son from preschool for the last time,  I was very sad.  He was ready to run out of the door but his teacher and I made him stay in his classroom.  We had to take pictures, of course, of him in the classroom and then with his teacher and the two aides who have been with him for the past three years.  Despite the frustration that came along with my son's transition to kindergarten, these three women were a huge part of my son's introduction to school.  They have cared and nurtured him and seen him grow during the past three years as well.  They have watched him go from not saying anything in the classroom to willingly answering questions (sort of) and participating in all aspects of the class.  So there were many hugs for my son on his last day of school and the teacher and staff made me promise to keep them updated on my son's progress.  I did okay until the very end when I got choked up as we were heading out the door.

For me, I definitely felt like we were leaving a sanctuary, a cocoon that has been my son's place of growth - physical, mental, and emotional.  Now, we were walking into the unknown.  A new teacher, a new school, a completely new environment.  Obviously, I do not do so well with change as my adaptable son.  Perhaps because I am aware of potentially more challenges that he faces.  Pre-school, as all parents know, is a world of difference from elementary school.  So old fears crop up:  "will he fit in?"  "will he be accepted by other kindergarteners in the general education classroom?"  "will it be obvious that he is in a classroom for kids with special needs?".  Then of course I have the regular worries of can he make it through a full day of kindergarten, will he eat his lunch, will he remember to go to the bathroom?  It is a big difference going to school five days a week all day versus three times a week for two and a half hours.  I suppose it is more my fear of the unknown that makes me nervous.  My more pragmatic husband put it succinctly - there will be initial adjustments but our son will be fine.  I suppose I will be too.