Sunday, April 7, 2019

Progress and Hope

I know that it has been forever since I have created a post. I desperately want to do better in this regards as we move forward in the coming year. I think that I have blogged less in large part, because my child has been doing so well and autism has become less and less at the forefront of my thoughts. To be honest, my preteen oldest child has been the one to give me the most angst in recent months. I decided that I needed to sit down and create a post after speaking with a mom of a newly diagnosed child. Her words really resonated with me. She told me, "Your story gives me hope. You need to continue to share your voice with other parents, especially to those of newly diagnosed children."

You see, I was once a parent to a child who was newly diagnosed. I wondered all of the same thoughts that I am assuming every parent of a newly diagnosed child thinks. My child was diagnosed at age three and I had no idea if he would ever be able to be mainstreamed in school due to behaviors. I had no idea if he would develop reciprocal-functional communication. His meltdowns were severe and would last upwards of 60 minutes and I wondered how this type of behavior would impact his life and the life of his immediate family. I made it my mission to do as much early intervention as I possibly could in an effort to know that I had done everything that I possibly could for my son. We enrolled him in developmental preschool, private speech, private occupational therapy, applied behavior analysis, physical therapy, and music therapy. Our life was therapy and we basically lived in our car, but despite these days being long and hard, I don't regret these choices for a minute. My son is thriving today and I honestly want to leap and shout for joy with the progress that he has made.

Now I realize that not every child will make this type of progress and that there are many parents that have dedicated their life to helping their child progress just like I have done, but the progress seen has been very little. I know that this happens, because I have seen it first hand as a special education teacher. With all of this being said, I do want to say that I believe in early intervention and I am a strong proponent for it. I do not believe that my child would have made the gains that he has if it were not for all of the interventions that we put in place when he was young. As a mother to a newly diagnosed child, I personally felt like what are the risks to early intervention? The risk being that he doesn't improve, but the reward being far greater in regards to him being able to grow and make progress. I was willing to take this risk and even a little bit of progress was worth the time and commitment that early intervention takes. I wanted to be able to look at my child and say, "I have done everything that I possibly could to make your life just a little bit easier."

Some of you may have read my posts in regards to the Duke University clinical trial that we participated in last year. I had banked my son's cord blood at birth and we had it infused last May. I haven't posted a lot since then, but we have seen astronomical growth in my son since this was done. In addition to the stem cells, we also did a round of Cog Med brain retraining to help with my son's working memory. You see, my son struggled with processing anything above two step directions. He is now able to do three and four step directions. Both of these therapies cost time and money, but from my perspective, they were worth the investment. My son is still in ABA and he is still receiving occupational therapy and speech therapy in the school therapy. He is also still monitored by his physical therapist. His hours in these therapies have drastically decreased since he was diagnosed. We are doing approximately 25% of the hours that we were doing upon his initial diagnosis.

Today, my child is in a regular second grade class in a rigorous private school. His teacher is absolutely amazing and she has done everything in her power to ensure his success in this environment. This child absolutely amazes me every day. He is passionate about those that are less fortunate than him and he has such a giving heart. He is able to articulate himself so well and I could honestly see him being a pastor one day. He has a heart of gold and such a love for the Lord. I am so blessed to be his mom and I know that this boy has such a wonderful story to tell and I am sure that he will tell his story as he continues to grow and mature. I am so thankful to be the mother to this wonderful child. I will try and share the specifics of some of the interventions that we have done in the coming weeks.

Sunday, March 26, 2017

Celebrating Victories

It's been awhile since I blogged last. I don't want to make any excuses, but life gets busy. My kiddo has come huge leaps and bounds this year. I just love watching him interact with other kiddos. He is now able to regulate his behavior in a way that he was never able to do in the past. This isn't to say that he doesn't have meltdowns, because he does, but these meltdowns have decreased drastically in frequency and the severity of these meltdowns are much less intense than I've ever seen before. My kiddo is now doing things that I honestly wondered in the past if he would ever really be able to do. We just signed him up for machine pitch baseball. He is loving the experience and all of the team parents just love his enthusiasm for the sport. Signing him up for baseball was something that my husband and I debated about in regards to whether or not he was really ready for it, but ultimately we decided that if our son wanted to play, he deserved the experience. Thankfully, the way the age brackets worked out for this season, my older son is getting to play on the same team as my kiddo. My little guy looks up to his big brother, and this has really made my kiddo want to try his very best in this sport. I am just amazed watching him while he plays this game. We tried this sport a few year ago, and unfortunately my son just wasn't ready. Even with my husband out there full time as a one on one, it was just simply way too much for our son.

My kiddo has also started doing some very typical things this year like faking like he is sick so that he could get out of doing school work. Honestly, I had a hard time not laughing when he showed up to the nurses office with his fake cough. The nurse wanted to send him home, but I just had a gut feeling that he was faking it. The nurse told me should would do some investigative work, and low and behold, my kiddo admitted to the nurse that he just needed a break so he figured that he would fake like he was sick. When my kiddo came home from school on this day we talked all about the boy who cried wolf. This is a pretty abstract story, and he got it. I am just constantly amazed with this kid. Here is a kid that had probably a 15 second attention span, that would meltdown multiple times per day, struggled with age level communication, and he had severe sensory issues. Today, he is doing amazing things! He is actively engaged in his behavior chart. Does he have bad days? Yes, but don't we all? He is making friends and wanting to try activities and sports. Does he still have areas that need improvement? Yes, he does, but those areas are so small in comparison to the huge areas of deficit that he had in the past. Today, I am celebrating his successes. Do I still worry about him? Yes, I do, but I have learned to count my blessings and control the things that I can control. Being an autism mom has taught me many things, but one of the biggest things that I have learned on this journey is to rejoice in every milestone achieved and to celebrate every victory.

Sunday, January 1, 2017

Finding the Right Balance During 2017

My kiddo has been in therapy for his entire life. If there is a therapy out there, we have probably done it. My little guy spent multiple years doing speech therapy and occupational therapy in the school district in addition to the two times weekly private services for both speech and occupational therapy. We also did ABA, music therapy, and physical therapy. When you add in school, my little guy had little time for anything outside of his busy therapy schedule. I am a huge advocate for early intervention. I believe that my kiddo needed this type of schedule for a number of years. The question is, does he still need a demanding schedule and how do we find a balance in 2017?
My little guy was recently exited from private occupational therapy. His therapist believed that my kiddo was at a place that he really needed to be doing things besides therapy such as Boy Scouts and sports. When he was exited, she did note that it would be important for him to be continually monitored with the possibility of looking at integrating summer sessions. My child does still receive OT in the school district. Hand writing is still difficult, but handwriting is difficult for most children on the spectrum, and I really needed to decide if this one area was enough of a reason to keep him in OT. Ultimately, we decided that it would be in my little guy's best interest do have the opportunity to do other things with his afternoons. He is currently a Cub Scout. He absolutely loves being a scout!

Making a decision with speech therapy has not been as easy. My kiddo is completely verbal and he has reached a place where therapy sessions have become increasingly difficult. In addition, therapy sessions require increased focus. I had the opportunity to watch him be reevaluated a couple of weeks ago. He completely bombed this test. His scores ended up reflected a HUGE delay, because he did not try at all for the majority of the test. The beginning of the test started out with some rather difficult questions and I believe that it just put my child in a place where he just randomly guessed to get the test over with. He was not focused and obviously irritated. I knew that he knew the majority of the answers, but he just threw up his fingers to answer and he did not stop and listen to the entirety of every question that was asked. The test was obviously frustrating for him and it was extremely frustrating for me to have to watch. It was obviously not fun for his speech therapist either. She is absolutely wonderful, and it has been hard for her to find exactly what this kiddo needs.

After the evaluation concluded, I had the opportunity to do some reflecting about speech. My kiddo's speech therapist in the school district has not indicated any difficulty at all with my kiddo. She actually indicated the my little guy was a peer model and that he consistently performed well during his group speech therapy services. This made me ponder whether or not doing his private speech sessions in a group session may be better suited for my kiddo. Two weeks ago, I also had the pleasure of attempting to game plan with my child's speech language pathologist. We ultimately decided to end up trying services with a new therapist within the facility. My little guy has been receiving services for so many years and he is really kind of therapized. We see him revert back to learned behavior when things get hard rather than persevering and working hard to overcome challenges. This is not seen in group sessions, because my little guy is at a place where he really wants to make friends and fit in. This situation has really made me begin to ponder on what services does my child need to be successful? The answer is not as clear cut as it used to be.

My goal in the coming weeks is to really try and find the right balance for my child. I want to give him what he needs to be successful... I want to find the right balance... I want my child to find continued success in 2017. Decisions can be difficult and I am hoping and praying that things will become clearer in the weeks to come.

Saturday, December 31, 2016

2016 in Review

It has been awhile since I have posted. The end of the year has been so crazy that I feel like I have got little accomplished. I am making it my New Years Resolution to spend more time blogging in 2017. I'm not trying to making any excuses, but the end of this year just seemed so much busier than prior years. At the end of November, I began taking care of my two nieces due to a recent job promotion that their dad received. Taking care of five kiddos left little time for me to do much more than trying to get all of the kids where they needed to be. Things have finally settled down, and I must admit that I am missing all of the chaos now that we are back to having only our three kiddos at home.
Now on to the good stuff, 2016 was really a magical year for my kiddo. He has grown in so many ways. His kindergarten year brought many challenges that I blogged quite a bit about at the beginning of 2016. I am not quite sure what happened, but my kiddo's first grade year brought a sense of maturity. He is doing amazing in school and he even earned student of the month during the month of December. I had to hold back my tears at his award ceremony. My kiddo has come so far and I just love celebrating his successes.

With all of this being said, I do think that it is easy for others to sometimes forget that my little guy is on the spectrum, because for the most party he keeps himself pulled together so well the majority of the time. For example, my little guy had a meltdown with his tutor at the beginning of December. It was a type of meltdown that we hadn't seen in months, but for my kiddo, on that particular day there were so many changes that occurred that he couldn't regulate his emotions. On this particular day, the tutor had to reschedule and come earlier than expected on a day in which she did not typically come. My kiddo had been doing so well, so I became lax and did not write the changes in on the calendar. In addition, I did not tell him about the time change. To top it all off, when the tutor did come, I was not there, because my nieces were with us, and I had to pick them up from school. All of these little changes ended up causing a huge meltdown. My dad was over when this occurred, and he couldn't quite grasp why my kiddo could not regulate how he was feeling. I had to explain to my dad that we all have got pretty lax and in many instances such as this we have not properly accommodated in the ways in which we should have. Often times, no meltdown will occur, but in this example, a cascading effect occurred, and it really brought us back to reality that despite how remarkably well this kiddo is doing, that he has autism, and that we all need to do a better job of remembering to do the little things to make life easier on him.

As we go into 2017, I am going to make it my goal to not only celebrate my son's successes, but to also continually learn how to properly accommodate my son and his needs. We are kind of on an uncharted territory in many ways. In prior years, it was really easy to determine what he needed, but now it is not so easy. My child wants to have independence and he wants to do things on his own, but he also still needs support and now I need to learn how to balance the two. I am so proud of my child and who he is. I cannot wait to see what 2017 will bring. I wish you all a Happy New Year! Here's to a great 2017!!! Many Blessing to All!

Thursday, November 24, 2016

Thanksgiving and how thankful I am for my kiddo....

This year I have so many things to be thankful for. My son will be seven in December of this year. Things have not always been easy and honestly there were some periods where things were really hard. It felt like I was living my life in therapy sessions or I was in meetings with the school or in a meeting with one of my child's providers. This was our life up until very recently. I think that I need to make this known, I was really okay with this life. I love my son more than words can describe and I would have done anything in my power to make things easier for him. I believe in early intervention and I have had first hand accounts with the benefits of early intervention with many other children that are not my son. Every year, I have had so much to be thankful for. Despite the many obstacles that my son has faced in his short little life, he has always been happy and healthy, and in my opinion, this is what truly matters. I feel blessed to have been chosen to be this child's mother. I would not change him for anything or anyone. I love him more than words can describe. He is everything to me, he is my my child, and I love him with an extreme fierceness.
Things began to change for my child around the spring time of this year. He gained some maturity that we hadn't seen before. Everyone seemed to notice. Meltdowns started to decrease, transitions became easier, and he was better able to regulate his emotions. This happened extremely fast. I am not sure what happened, but I am going to take it for what it is. My son has been in private therapy almost his entire life, and this summer we were told that my little guy was ready to experience life outside of therapy. You know, doing things like boy scouts and playing sports. This fall is the first time ever that I haven't had to balance my son's schedule. His schedule was so crazy that I needed all hands on deck to support it. My parents and my mother in law supported him and me to make sure that he could get everything that he needed. It's really kind of weird to no longer have to juggle his crazy-hectic schedule. At first I was nervous, but now I am just beyond thankful for this huge leap that my son has made. He is thriving everywhere. He is doing well in school, he is making friends, and he is beyond excited to start boy scouts next week. I am so thankful for all of these things.

When I reflect on everything that I am thankful for this year, I really think about just how thankful I am that God chose me to be this child's mommy. Things have not always been easy, and I am sure that there will be some tough roads ahead despite things currently being somewhat easy for us, but no matter what, I just feel so blessed for this wonderful child. He is my superhero! I will always be his biggest supporter, his greatest fan, and his cheerleader cheering him on from the sidelines. Today, and everyday I just feel so blessed that my little guy gets to call me his mom and I get to call him my son.