Changing schools

The last post was updating about our full Vanderbilt assessment. The report was very thorough and included recommendations on treatment. We have spent so many hours meeting with people to learn about offerings at different schools (public and private), talking to professionals, parents, etc. It has been like navigating in a maze. Each time you think you've resolved an "issue" two more appear. There really is not a "best" option. For B to receive the recommended amount of therapies, he will need to transfer to a developmental Pre-K program (which is only offered at Whitehall Pre-K) beginning this school year. I can’t tell you how difficult of a decision this has been. Some of the issues we were having in deciding to move him was the condition of his new school is not great. It angers me that we do not put more priority and emphasis in providing better conditions at all our schools (that’s another rant/discussion). Another issue we encountered is there not being any after school at the school. The school will only bus children to residential addresses and no local daycares offer part-time or after-school care. It makes it very difficult for working parents. Thankfully, our in-laws have agreed to pick Brody up 4 days a week from school and Bill will pick him up one day. I hated to ask this of them but there were no other options and I am slowly realizing and learning to actually ask for help.
We have loved his current school (USJ) and want to make sure people understand he was not asked to leave. They offered to help us in any way they could but we understand that they are limited in what and how they can help. We will miss everyone and are grateful with how they have been so kind to us during this time. Ultimately, for us, it came down to listening to the recommendations from professionals on early intervention, where can we maximize the amount of therapies and to surround him with people that have more experience working with kids with Autism. I keep telling myself it's not about what we want but what he needs.
I think the hardest part for us is accepting that our child actually needs special needs services. It’s hard to describe coming to terms with realizing your child needs more than others and more than what you know to how to give. I have never been so unsure of what to do but all we can do is try what we think is the "better" option. Brody does not handle change very well so I am very worried on how the transition will impact him. Thank you for your continued prayers for him. We definitely appreciate the positive support.

Our little “complex” profile

So many ask how Brody is doing and I thought I would post an update. We went to Vanderbilt yesterday for Brody’s psychological evaluation. This was an appointment where they look deeper into his development. The appointment was 4 hours. There were so many questions, but by this point we are used to answering, a lot of simulations with B and observations. That was probably the hardest part. We were allowed to be in the room with him but not able to really participate.  We had two doctors with this appointment and both were amazing but the appointment was long and draining. 

They confirmed again, Autism Spectrum Disorder. They said B is a “complex” profile. He doesn’t fall either high or low because he has some traits that he ranks high in and other traits in which he ranks really low. He’s a bit complicated. Welcome to our world. They suggested intensive therapy for him. Speech therapy, occupational therapy and behavioral therapy. We are already doing speech (twice a week) and occupational (once a week) so we need to start the process of looking into Behavioral Therapy. They also suggested we look into the options available now within the public school system. 

There are mixture of emotions right now. I am so relieved that this appointment is over and for the most part, there are no more major appointments looming over us. I can’t help but also feel very sad. In a way, this was our last chance of someone telling us the others were wrong and Bro doesn’t have Autism. I wasn’t naive going into the appointment but I couldn’t help but have this little bit of hope. I struggle so much for wishing the Autism away because oddly his autistic traits, good and bad, are all we have ever known and make up who Brody is so how can you wish it away? I am trying to be strong, put up that “I got this.” face but I am terrified. I am scared of what is ahead, scared he will need something that we will either not have access to or not be able to afford, scared on the strain this will put on relationships, including my marriage. To be truthful, because of my childhood, I’ve always felt a bit ill-equipped being a mom so I pray that God sends me wisdom and or at least some cliff notes on how to handle this all. 

Thank you again for all of your thoughts and prayers for Brody. We are blessed to have some pretty amazing people thinking of him. 

Ms. Grimm

I haven’t blogged in several weeks. Time has been flying by it seems. I can’t believe the school year is over! It seems like yesterday I was dragging (seriously dragging) the mini human into the classroom. We were so fortunate to have such a great support system at his school but I wanted to specifically thank a very special woman, his teacher Linda Grimm. 

There are certain people that God places in your life at certain times and I fully believe Linda was one of those people. From always asking about his therapy appointments and if there was more she could do to help B, to filling out additional paperwork for his doctor’s appointments she was willing to do anything to help Brody with his progression. 

During the months leading up to Brody's initial appointment, she would talk to me and patiently answer all questions I had about Brody. She tried to ease my worried mom fears but was not afraid to point out her concerns as well. After his initial diagnosis, I cried several mornings in her arms. She had been through this process with us entirely. She offered me guidance, strength, and compassion. 

I am sad that she will no longer be Brody’s teacher and even more sad that she will no longer be at his school but so glad that the world will continue to see and know this amazingly beautiful inside and out woman. Words will never be able to fully thank you for all that you’ve done but please know Ms. Grimm you will always be our teacher and our friend. Love you!

Here are a few pictures of the last day:

Ms. Linda holding a gift from the class (all the kids thumbprints)

Don't let the picture fool you, he adores Ms. Linda.

Showing love!

Last time in this class. :(

Goodbye to "OUR" month

Today is the last day of April, the last day of Autism Awareness Month. It’s strange because I have never directly been involved in an awareness month. Sure I’ve fundraised or volunteered for worthy causes but never had something so close like this. It’s ironic that in less than two weeks after learning about B, the awareness month began. Many will move on to the next philanthropy but know for so many of us the struggle continues. People ask how we are doing and the answer is different each day but most of the time I will simply smile and say, “we’re doing ok.” If you truly want to know, we have good days and bad days, great days and awful days. There are days I’m ready to take this on and fully believe I can tackle all of my personal and professional responsibilities and then there are days where I want to crawl into a ball and cry by myself. The ups and downs are exhausting. 

The update on Brody’s “treatment” is his speech therapy sessions were increased so we now go twice a week for speech therapy. He was also evaluated to see if he needs Occupational Therapy and he does. He will start going once a week for Occupational Therapy to help with his sensory and fine motor skills. That makes three different therapy sessions a week. Although it is draining juggling all of this, we were glad to start to get some sort of plan for helping him then we found out his speech therapist’s (who he adores) schedule may be changed. So we would be left with two options: 1) Have a different speech therapist for one day or 2) try to coordinate a different time which would cut into our work day more. I know these may sound like simple problems but when you are dealing with change in our life, nothing is simple. Change is very hard for Brody. But we will move forward, keep going, trying to fight for what is best for our mini human.  So tomorrow brings a new month, a new day, a new chance for us all to make a difference. 

One Week In - Details About B

We are one week in. Autism Spectrum Disorder is a such a wide umbrella. No child is the same and there is so much misconception about what autism “looks like.” People have inquired about Brody’s “signs” or “symptoms” so I thought I would try to describe some of what we are experiencing. I’ll start with his speech. Brody can identify things and say general sentences “I want milk.” “Give me some chocolate.” “Sit down right here.” but has issues with expressive speech. For example, he can look at a picture and say, “She’s crying.” but cannot tell you why she is crying. He can tell you that someone is eating but not tell you why they are eating. He may ask questions but will not be able to have a conversation with you. He does not tell you what he is feeling such as telling you he is mad or say “I love you” without being told to do so. Working on his speech is tricky because he is very smart and clever. He can memorize things well. He will memorize answers to questions and when you quiz him he will give you the “correct” response but it’s from memorization not a real answer. For example, each day I pick him up from school I will ask him questions about his day (even though I know I probably won’t get answers). I’ll ask him who he played with at school. He will answer “Played with Liam. Played with Miles, etc.” BUT more than likely you will get the same answer regardless if those kids were even with him at school that day. He also has issue with repetition. We call this his “infinite loop.” Once he is caught in his infinite loop it’s like a broken record. He will repeat the same phrase or ask the same question over and over and over. You just have to let it go until he finishes. That is just a basic explanation of some of the issues with his speech. I would love (and I do hope) to be able to have a conversations with him and to hear what’s running through that little mind.  

Brody can follow individual instruction really well when he is told to specifically do something. He has a lot of trouble following group instruction. If his teacher instructs the class to go stand on a certain shape on the rug Brody will not do it (even though all the other kids have done this) but if the teacher goes to him and explains what she needs then he will more than likely follow her instruction. Socially he does not really play or parallel play with other children. He is not disruptive with other kids but typically just “does his own thing.” Example, when he goes to the gym he will do the same activity each time, run and slide, run and slide. He will do this by himself and never ask another kid to join him but if another one does start to run beside him and does the same thing he is fine. We took him to a birthday party and all the kids were on one side of the gym while Brody was on the complete opposite BUT he was having the best time by himself, doing his own thing, and laughing at the other children. 

As I mentioned in the previous post he has several “quirky” behavioral traits. Sometimes he will lick his bottom lip until its raw, run back and forth or run and slide run and slide continuously (much more than for a toddler), and cover his ears for no reason. He has VERY good hearing. He will hear sounds that we can’t even hear until we pay close attention. He also tends to obsess about one thing or item for extended periods of time. He is obsessed with one pair of his uniform pants and when he is home he HAS to be wearing them. As soon as we get home in the evening, he must first get his black pants. If they are being washed or he can not find them, then total meltdown. Brody also hits/slaps his head repeatedly for no reason. The last trait is probably the hardest to watch because sometimes he does it so hard that I know it must hurt. 

Brody saw a Developmental Pediatrician with Vanderbilt. We were fortunate it was one of the monthly appointments where they travel to Ayers Children’s Medical Center in Jackson. This way we didn’t have to disrupt B’s schedule too much in the morning. Several people have asked if the diagnosis is 100%. Diagnosing a developmental disability can be tricky as there is no blood test.  The doctor had reports from Brody’s teacher, speech therapist and of course us. Then there were lots and lots and lots of questions and then observation of B. I suppose this is what adds to the mix of emotions because as his mom, I still have this naive hope tomorrow I will be told they were wrong. Doctors were wrong about the mini human when he was just a nugget in my belly but I know deep down it’s our reality so we move forward. What are the next steps? He will be seen by a psychologist at Vanderbilt. I received a call on Friday that there is a YEAR waiting list just to have the appointment made. So frustrating. We have a family friend that is trying to help secure us a sooner appointment but there is no certainty. Next week his speech therapy is increasing to two times a week instead of just once a week and he is being evaluated to see if occupational therapy will help. Thank you to everyone that have offered words of encouragement. From Facebook messages, texts, visits, hugs, I cannot tell you how much all of this has meant to us. When I am feeling very down, I think about all of the people “rooting” for the mini human and it rejuvenates me and inspires me to do whatever he needs and ensure that he continues to be our happy little boy.

How we got here.

When people find out you are pregnant they will ask you all sorts of interesting questions about what you will do, or what would you want. Do you want a boy or girl? They also will ask you random hypothetical questions. I would always answer, "I just want him happy and healthy."  I realize now that was a lie. I wanted my child happy, healthy and without struggle.

I'm not sure where to begin explaining our situation. Brody has always been our quirky little boy and had interested traits, jumping and running for long periods of time for no reason (which is very useful when you are trying to work on house chores), getting stuck in what we called his "infinite loop" constantly repeating the same word or phrase over and over, licking his lips until they were raw and then the past several months he has started hitting/slapping his head for no reason. Again, these were all quirky traits of Brody and made him who he was so at first we didn’t acknowledge these traits could be anything other than “our goofy little boy.”  

At Brody’s 3 year check-up appointment his pediatrician was going through the list of “milestones” and I remember her asking about his speech. After discussing how Brody had limited speech and had never said a full sentence it was suggested for us to have his speech evaluated. Three weeks later we had the evaluation and it was determined that he needed speech therapy. I cried and I felt so silly for crying. This was no big deal and very common. At the same time, we decided to transition Bro Bro into a school instead of daycare sooner than what we had planned to hopefully help with his development. It was a hard transition. Take that back, it was an AWFUL transition. The school, teachers and staff were amazing but Brody did not adjust well to the change. He cried so much every morning and sometimes he would have to physically be dragged in the door and taken crying from my arms. It was excruciating as a mom BUT it was “for the best” so I endured it. Finally after awhile Brody started to say sentences, “I want milk.” “Give me chocolate.” Don’t judge the last sentence, it’s amazing what you will do/reward your child for when they finally speak a sentence.  I’ll never forget the morning when his awesome speech therapist came to speak to me. She was concerned that Brody had not been progressing at a faster pace. We discussed how he had great memorization and could sing songs and while singing could enunciate so well. She advised it was time to have him seen by a Developmental Pediatrician. The referral was made and when we received the appointment it was for June...7 MONTHS AWAY! I remember throwing my cell phone after hearing this. 7 months? Are you kidding me? I never realized there was such a backlog and need for these appointments. After praying, I decided to do something I typically don’t like doing…I asked for a favor and the appointment was moved to March. 5 months seemed so much better than 7! 

The holidays came and then a home renovation. These were much needed “distractions” from what was ahead but I still worried. It wasn’t until our home renovation slowed that I really started to think about the situation. We decided to keep the appointment from our family and most of our friends. There was no reason to worry them necessarily. But every day I would cry. I would cry for not knowing what was happening and I would cry from frustration and fear. I also prayed so much during this time. I prayed until I was so confused and not sure what I was praying for. Did I want a diagnosis or did I want to leave still not sure what we were dealing with? I needed peace. 

Fast forward to March 23 to our appointment. The doctor was so nice and she had a very relaxed way of asking questions. After the appointment and hearing it confirmed what we had suspected, I went through every emotion possible: sad, angry, confused, scared and relieved. I am still going through all of these emotions.  

I know things could be worse but that doesn't make me feel better. This is something I can't fix and for the controller in me that is hard to accept. I am normally a strong person, I've had no choice but to be strong in my life but I feel so weak.  Bill and I had discussed whether or not we wanted to “share” the news about Brody. We decided that for better or worse, this is our life. I never want anyone to think I am nothing but absolutely thankful and proud to be his mother. I have no idea why this is our path but I know I am blessed and honored to have this mini human in my life.