Switches, the kindness of strangers, and Disney!

I want to start this entry by saying how amazingly kind people are in general to Finn and our family. I started this blog with its sole purpose to be an outlet for me to get a lot of things/feelings off my chest, to be a therapy tool to help me cope with this situation we are in. But the longer I do this I am realizing that this is a great way to keep people updated in how Finn is doing, what challenges we are facing, what he has accomplished, and the struggles I face as a mother to a special needs child. My target audience was of course family members who live far away from us, but I am finding out that way more people keep tabs on Finn than I realize. I have gotten such amazing feedback from people I haven't talk to since high school, friends of family members, and even strangers who have reached out to offer advice, words of comfort, and even gifts for Finn. Most recently Finn received this in the mail from someone I have never met.

I feel very lucky to have people in this world who are in Finn's corner and rooting for him and thinking of him. So from the bottom of my heart I thank each and every one of you.

Finn has started preschool in August and since then our schedule as been pretty busy.

 

 He goes to school 4 days a week on top of going to therapy 3 times a week. So he is always doing something. Our latest thing is getting Finn to communicate through the use of switches. It is amazing how awesome this technology is. He is learning how to find his voice and tell us what he wants and needs. Unfortunately, he is only able to use this technology once a week. I am hoping to get one funded so we can have one to use at home b/c he does awesome! We were at speech therapy this morning and just look how awesome he does with this technology! The first video is early in the session, and he hadn't had speech for 2 weeks so he was a little rusty, but the other videos posted are later that same session and he is speedy with his switches!

He does that well with only using this once a week!! Can you imagine how expressive and talkative he will be when he has one of these full time!? God, he makes me so proud!

Our family leaves for Disney in less than a week. We are really looking forward to our vacation. I know Finn will have such a great time, and I am sure I will be taking like 1,000 pictures that I will be sure to share once we get back!

BIG EXCITING NEWS!!

Finn has been so busy this summer..between all of his therapies, school, and play dates, and traveling...I haven't been able to update and fill everyone in on the EXCITING NEWS!!!

Finn has been granted a WISH through a fabulous foundation called Wishes Can Happen. They are sending us on an all expense paid trip to Disneyworld!!! Included in this wish are passes to ALL of the Disney parks and Universal Studios. We will be staying in this amazing village called Give Kids the World. It is apparently pretty awesome, and is equipped for all adaptive equipment. Ethan and I are so excited and so grateful for this opportunity. I have been saying for the past year that I want to take Finn to Disney because I hear that they are very good with special needs kids, but there would be no way Ethan and I could afford to take Finn anytime soon, so to be given this chance is just amazing and we can not wait! We are going at the end of September/early October.


Finn has been seeing a lot of specialists lately...We just saw Neurology bc I had a suspicion that Finn was having seizures again. The feeding clinic put Finn on an antihistamine to make him hungry, which will make him eat more and hopefully put on some weight. He was on this drug for a month, and it was working...Finn became a little piggy and he actually gained over a pound in 3 weeks. It was great....but then I started noticing Finn do some weird things.  He would do something weird with his eyes...every instance was quick but I knew something was not right. The feeding clinic told me there was a small chance that this antihistamine could affect the topamax, but not likely. Well leave it to Finn to prove everyone wrong. I pulled the drug and kept an eye on him.  Seizures are so hard to spot bc they can manifest in so many different ways. Finn had infantile spasms which are easy for me to spot, and I am happy to say that he did not have any of those...but he would just kind of zone out for a few seconds. I couldn't bring him back to me no matter what I did. Then he would come back and act like nothing happened. These episodes could not be predicted, they did not happen every day, they didn't come in a cluster, and they only lasted maybe 15-30 seconds. So Neurology decided to up his topamax. So far so good...

Finn has always been a terrible sleeper. Ever since he has been born, sleep has been such a struggle for him/us. All the experts kept telling me 'you just need to give him more time...he'll get the hang out it' 'you are babying him...you need to be more disciplined' blah blah blah. I am exhausted...Finn is exhausted. Its been three years and I can't take it anymore! So when we were at Neurology, I discussed with his doctor that sleep is not getting better...it is actually getting worse! Finn has terrible muscle spasms/startles that wake him up! His Doc said 'well let me talk to a colleague of mine and I will call you in a few days to see what he suggests' and I told her I was not leaving the office until she wrote him a script for something to help him sleep. We can not keep going on like this! Finn needs sleep!! It's not healthy for a child to keep waking up in the middle of the night...never getting the healthy REM sleep that we all require!! So his Doc leaves the room, asks a colleague of hers that is a neurologist who specializes in body movement and sleep...which is right up Finn's ally...why haven't we ever seen this doc before!?!? So they come to talk to me about putting Finn on a small dose of Baclofen. I immediately have serious doubts...Baclofen is a medicine that helps kiddos who have high tone issues, like Finn, however the reason why Finn cannot be on this med is because it can cause seizures....and since he has a history of seizures Ethan and I, and the doctors, decided that Botox would be a great option for all of Finn's tone issues....So when I hear these docs wanna put him on Baclofen to help with sleep I have serious concerns. Their plan was to put Finn on .5ml only at night. That is like such a super small dose. It will hopefully be a small enough dose to not affect his seizure medications, but large enough to help calm his muscles when he sleeps. When the doc sees how hesitant I am about this plan she looks at me and says 'you need to try something. Lack of sleep can cause seizures, and this is such a small dose of Baclofen that the risk is minimal, plus we upped his Topamax.'  So I went ahead and agreed to try this med. He has been on it for about 2 weeks now and his sleep has improved. He is not having his twitches/startles when he sleeps anymore. He has been doing like 5 hour stretches in his bed by himself, which is amazing! So far this is working, and I hope everything keeps going well!!

Dealing with the school district....

Finn is rapidly approaching 3 years old! I can't believe my baby is growing up so fast...I still see him like this:

But Really he looks like this now!

Finn turning 3 is bittersweet because once he turns 3 he will age out of the Help Me Grow program he has been in since he was 4 months. The team of professionals following his progress, helping me with any and all questions I have about therapy, funding, education, adaptive equipment, doctors...will be gone. Of course Finn will be going to another program, Franklin County Board of MRDD, but I feel like we have to start over again. On top of all this change, Finn is now old enough to go to preschool which means now the school district get involved with Finn. I have always been nervous about meeting with the school district, bc I don't know if they are capable of meeting all of Finn's needs. After meeting with our school district TWICE, I am confident that they are DEFINITELY not the school I want Finn to go to. At our initial meeting, the school psychologist came to our home, sat down at our kitchen table with me, Finn, and our service coordinator, and did not even acknowledge that Finn was at the table with us. She didn't look at him, talk to him...nothing. As his parent and advocate, I am extremely conscious of how people interact with Finn, especially professionals having meetings with me about Finn. If someone acts like Finn is invisible, I am pissed. Especially a school psychologist! Who's job is to go to the special needs children homes and start the paperwork to complete their IEP! This woman never reviewed anything about our case. She didn't know are history or anything...even though she had all the paper work in front of her. I was immediately turned off. Then when I told her that Finn has vision issues, she didn't know how to go about getting a vision specialist in to see Finn to do an assessment on him that will help write his IEP.  So obviously this school has no experience with kids who have low vision.  After that disastrous meeting, I cried to my service coordinator. This first impression of this school district was terrible, my confidence in them was shot. Luckily she talked me off the ledge, gave me some great advice on how to handle the next coming weeks when the school will do their assessment on Finn, and then his initial IEP meeting. 

Last week Finn had his assessment with the school district, and I wish I could say that it went better. I tried going in with an open mind. That day Finn met with a school psychologist (a different one that came to our house) a PT, OT, and a speech therapist. The PT was very nice. She was great with Finn. The OT was pretty good too...the speech therapist however, was ignorant. The PT and OT were on the ground playing with Finn, seeing what his gross and fine motor skills were and asking me questions about how he is at home. The speech therapist asked me a few questions trying to determine how Finn communicates with us. While I am on the floor talking to the PT, I overhear the speech therapist say to an assistant that is in the room with us,  "I can't ask any of my questions bc he can't really do anything".  I couldn't believe my ears. This ignorant professional said this within shouting distance of me and my kid. The mama bear in me wanted to go over and choke her. But I kind of just laughed to myself and thought 'over my dead body will Finn ever attend this school'.  For the record, I have been asked those standard communication questions a 100 times by different professionals and they all have been able to adapt the questions to fit Finn's skills. For what Finn has to work with, he is very perceptive, and understands a lot of what Ethan and I say to him. And for someone who doesn't know him and just assumes that Finn can't communicate his wants or needs to people is just ignorant. and it's obvious that these professionals do not have the experience with someone with Finn's condition. So he will be going somewhere else. We have our final meeting with the school in 2 weeks. and I plan on telling them that I think they were unprofessional and left a terrible impression on us. 

For now Finn will continue to go to the school he is at right now. He loves it there, I love it there, and the teachers, therapists, administration staff, everybody is incredibly nice and they have the experience and knowledge of special needs children. Finn can stay there until he is 6 so we have time to figure out where he will go from there. 

Triggers.

Ethan and I get told pretty often how great of parents we are and how we are so 'brave'. But we aren't the brave ones. Finn is. Finn wakes up everyday with a smile on his face ready to face the world and all the challenges it throws at him. I, on the other hand, struggle to keep it together on a daily basis. On the outside I may seem I have it totally together...well adjusted...and 'brave'. But the truth is I don't feel like any of those things. It's been 2.5 years since Finn has been born and over a year since we got the CP diagnosis, and I still cry every day. It might only be for a minute and just a few tears, but it still happens every day.  Usually it is because something triggers a reminder of just how much Finn has to overcome and how much he will have to face in his lifetime. I go about my day keeping to Finn's schedule and BAM! I see or hear something that just makes me lose it.

For instance, today I was picking Finn up from school and as I was strapping Finn into his wheelchair I overhear a mother as the teacher if she can have the names and numbers of a few mothers in the class. She was planning her son's birthday party and wanted to invite 2 of the kids in the class.....seems like not a big deal, but it made me cry. Luckily I was able to wait until I got to the parking lot, but I cried. I cried because I wondered if Finn will ever be invited to a birthday party. Will he ever have friends? Is he making any connections with kids in his class?? I can only go off of what his teachers say, and they claim that Finn likes to be around the other kids...Somedays it is really hard for me to go pick Finn up from school because he is one of the only ones who can't sit or walk. He hardly uses his hands so its hard for the other kids to play with him.  Some days I struggle more than others, and today I am having a hard day. In the end I just want what's best for Finn, but I also want him to have a normal childhood. Filled with love and friends. I think Finn is amazing and I love him more than I ever thought I could ever love anything or anyone in the whole world. I think what I am thinking and feeling is a normal part of being a parent with special needs. We are lucky that we have so much love and support pouring in from all different places, but it can still feel like a lonely journey. I just recently found a CP support group in the area and I am hoping to go to the next get together.

This blog is my therapy. I have always found that keeping a journal to express my feelings helps keep me sane, and on a day like today I really needed to get some of this off my chest.

Growing up Finny

It's been awhile since I've had a chance to update, but I hope everyone had a lovely holiday. Finn had a great Christmas this year. This was the first Christmas that I felt Finn was really aware of what was going on. He looked at the presents that were in front of him, and he showed true excitement when he got to play with his new toys. This video is one of my favorites. You can see just how happy and excited he is for Christmas morning!

There have been some BIG changes we've noticed in Finn the last month. It's like all of a sudden things are clicking and falling into place. He has been making progress in PT. I have noticed his trunk getting stronger which helps his independent sitting. The other day he was able to sit by himself for 10 whole seconds and he did this multiple times during that therapy session. He has taken 3 consecutive steps in his walker completely on his own while wearing his leg braces. I always knew Finn could do these motor skills as long as we kept practicing. In my mind there is nothing Finn can't do when it comes to motor skills...it just might take him a little longer to figure out how to move his body. Speech therapy/feeding therapy is where I always feel deflated. Finn has been in this feeding plateau for so long and I don't see light at the end of this tunnel. I try to do everything the professionals tell me to do, but I haven't really seen any changes in Finn's feeding...that is until last week. Finn has finally learned a new oral motor skill! He has figured out how to move his tongue from side to side in his mouth (depending on where the food is placed). His tongue has never been able to do anything else besides thrusting it in and out of his mouth. That is one of the reasons why feeding can be so frustrating. But seeing Finn do something new is always exciting to me. It just proves that information is getting to his brain...it's just taking a little longer to process it.

The biggest change we have seen in Finn in the last month is his sleep. All of a sudden he just started sleeping through the night...on his own...in his bed. It's been amazing! The first night he did it I woke up in the middle of the night in a state of panic b/c I thought something was wrong with him. He never slept this long without wanting to be in bed with Ethan and I. I go to his room, check to make sure he's breathing...sure enough he was fine. I thought it was a fluke...but he did it again the next night. I finally feel refreshed in the mornings! Granted he still has some nights where he comes in our bed. Like the other night Finn woke up in tears b/c of a nightmare (I'm guess it was a nightmare anyway) so he slept with us. Some nights he will sleep from 10-8....the next night he will sleep from 9:30-3 then come to our bed until we need to wake up. Last night we had a night where he slept all night in our bed. You never know just how long he will stay down but he's at least giving us 5 hour stretches. It makes me so happy. Again, it's like something just clicked in him and now sleep has improved by a million percent!

I have always believed that Finn understands WAY more then we think. Sometimes I don't think people give Finn enough credit or they underestimate him. Sure he can't talk, but that doesn't mean he can't express his needs/wants. It must be incredibly frustrating to understand what is being said to you, but having a body that won't let you say or do what you want. I took a video of Finn the other night proving just how much he understands what you say to him. When I see this kind of behavior from him it just reinforces why I am doing this. I chose not to go back to work so I could stay at home and work with Finn, even though the extra income would be very helpful. My house is always messy b/c I spend most of my day working/teaching Finn. Seeing him learning and growing just makes my heart so incredibly full and confirms that the decision Ethan and I made for me to stay at home with Finn was the right one. He pretty much makes me a proud mama every day!

a few videos of Finny

Finn tries so hard to crawl...but he just can't seem to figure out that using your arms is key in crawling!

Tis the season to put on some weight.

Well it has been about 6 weeks since Finn had his consultation with the Feeding Clinic, and I am happy to say that since that time Finn has put on over a pound! He has been the same weight for about a year, give or take a few ounces. I am so pleased. He is gaining this weight just drinking the regular Pediasure...imagine how much he could put on if he drinks the Pediasure 1.5 (which they want him on...I just hope BCMH comes through with funding). We went to his CP clinic appointment earlier this week, and I was feeling good. Finn weighs over 25lbs and 3 feet tall. But his doctor comes in and says how he is concerned about how Finn is growing...and if things don't start picking up then we will have to go see an endocrinologist. UGH! Okay people, I am trying my hardest to get Finn to grow, it's only been 6 weeks since the feeding clinic...give us some time to get things rolling. So I just left that appointment feeling kind of deflated. Finn and I bust our butts trying to get results and when we finally gain a little ground it is still not good enough for the professionals. I just need to let it go, breathe, and be thankful that Finn is growing...even if I am the only one who notices...

In other news Finn had a meeting with his team at his school to discuss the start of his IEP (individualized education plan). This IEP is important because it will help teachers understand what Finn needs to work on, how he learns, and what his strengths are. I was actually pretty pleased with what his teachers, therapists, and specialists concluded about Finn. Especially what the vision specialist said about Finn. She says that he tracks objects, makes eye contact, looks at toys that are put in front of him, as well as tries to touch the toys placed in front of him. Obviously these are all things that I know Finn is capable of, but after our latest eye doctor appointment I was feeling pretty down about Finn's vision. I was relieved that this professional was able to see the same abilities in Finn as I do...just another example of how doctors do not know everything....Her conclusion of Finn makes me feel pretty positive that he might do okay in a regular school's special education program and not have to go to the school for the blind...but we shall see...In February we will have a meeting with Finn's team, Westerville school district, and the school for the blind where we will be able to ask them questions about which school will best be able to meet all Finn's needs. So no pressure mom and dad...His teachers and therapist all pretty much said the same things about Finn's personality, how he is a sweet boy, how he likes to be the center of attention, and likes adult interaction more than with his peers. That last statement I can't blame him because adults are all he knows. But I agree, Finn is a very sweet boy...he is the best.

Finn has been enjoying the holiday season so far...he got to see Santa and help me bake cookies...