I think it is hard for most parents to let go and allow their children to become independent. Being supportive as your child learns to explore choices, make decisions,and possibly make mistakes is one of the challenges of being a parent. Our ultimate goal is independence but after eighteen years of supervising, nurturing, and protecting it's hard to watch your children take those first flights of freedom. Those steps have been pretty easy with my oldest child. He is a relatively cautious and responsible individual. With a year of high school under his belt, we have started exploring dating, working, managing money, researching colleges, and the early preparations for driving. It has gone fairly smoothly. Our role as his parents has been to act as a support system offering advise and boundaries. When given options, he almost always chooses good ones. I pray he continues to grow into the good strong man that he seems to be becoming.
Unfortunately, I find it so much harder to step back and allow my youngest son to take those same steps towards independence. At each step of his journey, he has had to push back and assert his need for independence in order for me to grant it. With my oldest son, I encouraged it. I welcomed it. I trusted that he could handle it. It grieves me that I can't give my youngest son that same trust and latitude. His independence is one of my greatest goals and desires. Ten years of protecting him, supporting him, and guiding him has become a habit I'm finding very hard to break.
As summer draws to a close and our son prepares to transition to middle school, he has voiced a desire to stop attending out-patient speech and occupational therapy. He loves his therapists but it is his desire to start middle school like everyone else. He wants to join band and chorus. He wants to attend camps and activities like all his same age peers. I want that for him as well. I want him to blend. I want his transition to be a smooth one.
I'm afraid. I fear that he's going to need the support of his therapy team now more than ever. In the past, stress has increased his stuttering and blocking. Stress makes him more clumsy, less focused, and more prone to angry outbursts with us. It also increases his night terrors and sleepwalking. His therapy team has been a secondary support through these challenging times. It is easier for him to take direction and instruction from them, than from us. They can tell him the same information that we have shared with him but he listens to them because they don't live with him every day. My biggest fear is that his desire for independence will sever him from a support that he is going to desperately need.
On the other hand, he has shown growth. He is learning to advocate for himself. While undergoing the school evaluation for his new IEP this year, he talked openly and honestly with the school psychologist about his strengths and weaknesses. He showed an awareness of who he is and what he needs that was surprising but encouraging. In recent weeks, he has had very candid conversations with his therapists about his concerns about transitioning to middle school. That openness is also encouraging. When I asked him to pick up the Legos in his room so that I could vacuum his floor, he told me he would pick up and vacuum. He wanted to clean up all by himself. It took twice as long and wasn't nearly as thorough as when I do it but this desire for independence was extremely encouraging. He is voicing a desire to do more for himself more frequently.
I have many fears regarding our son's transition to middle school. There are so many factors that are out of my control. On the other hand, he is trying to rise to the occasion and become the independent young man he is going to need to be in middle school. So ultimately, I need to respect his wishes. At the end of summer, we will take a break from therapy. We will transition to middle school prepared with knowledge and skills from his therapists, past and present. We will develop organization systems to help him manage himself and his materials. We will stay in contact with his new school team and attempt to handle problems as they arise, rather than further down the road. We will also pray. A lot.
Friday, July 22, 2016
Wednesday, July 6, 2016
Finding Answers and Helping Others Along the Way
As my husband and I have made our journey with our youngest son, several questions have continued to bother me. I am often stuck asking "What happened?", "Why us?", and "Will it ever get better?" I am starting to come to terms with the first question. We will never know. I didn't drink, do drugs, or live in a dangerous environment. I did all the things that we were supposed to do. Genetic testing has shown a duplication on his one chromosome but it is a chromosomal abnormality that he shares with his father so that isn't the source of his developmental challenges. The last question is starting to become clearer as well. Yes. It is getting better. He is growing and developing and maturing. What will his long term "normal" be? I don't know yet. Today, I got a small glimpse of what the answer to the second question may be.
Our son and I were at the local hospital for his weekly speech therapy and occupational therapy sessions. They are currently scheduled back to back resulting in an hour and a half therapy block. Because I just finished my school year a week ago, I am a few days late starting my summer online course that I am scheduled to complete during the month of July. I figured this therapy block would be the ideal time to put a serious dent in my classwork.
About halfway through the therapy block, his first therapist tracked me down to fill me in on his progress this week. I was surprised when we arrived today because I had been told that the summer schedule would result in a therapist change due to a scheduling conflict. When she came out to talk, she filled me in. She refused to give up our son on her therapy schedule because she loves him and feels they have made a lot of progress. She told them they needed to rearrange her schedule so that she wouldn't have to lose him. I relayed to her that I was very grateful. Our son has a lot of anxiety at the moment as he anticipates his transition from elementary school to middle school. She shared that he had discussed that concern with her during their speech session. We both agreed that was a big step for him. There was a time in the past when he had trouble identifying why he was upset or what the cause of his anxiety may be. Now he can identify the source and problem solve ways to cope. These are great strides. He his growing in his confidence and in his communication skills.
Through our conversation about my son's anxiety, we started talking about concerns that his therapist has with her son. Although her son does not have developmental issues like my son and is much younger, some of the behaviors and experiences she shared sounded like our journey in the early stages. Concerns about what is really wrong. What do you do about it? How do you as a couple feel about it? Are your feelings about and methods of coping with the situation compatible and more importantly conducive to helping your child through his problems? So many of the fears, feelings, and thoughts she shared were fears, feelings, and thoughts that I had experienced years before. I was able to share with her that I understood. I had stood in her shoes. I had also felt that way. My husband had been there. His growth as a man and a father has been profound and humbling. He is a different man, a better man, than he had been ten years ago.
Several times through our conversation, she appeared close to tears. She looked tired. She looked overwhelmed. I know if I had looked in the mirror ten years ago, five years ago, maybe even a couple months ago, I might have looked the same. She told me our conversation gave her hope. It let her know that it might get better. It let her know she wasn't alone.
So maybe the answer to that second question "Why us?" was part of God's bigger plan. He wants us to share our story to help others. He wants us to grow as people but he also wants us to bring others along on our journey. Maybe our biggest challenges, fears, and hurts were meant to help others grow as families and to bring them closer to God. I know our journey has done those things for me. Our conversation today may have left her with a feeling of hope but it also helped me put our life into perspective. It allowed me to take a step back and see how very far we have come. The progress we have made. The strength we have gained. If that is his purpose, I pray he continues to maneuver me and grow me as he would want me. I pray he gives me the strength to do his work.
Our son and I were at the local hospital for his weekly speech therapy and occupational therapy sessions. They are currently scheduled back to back resulting in an hour and a half therapy block. Because I just finished my school year a week ago, I am a few days late starting my summer online course that I am scheduled to complete during the month of July. I figured this therapy block would be the ideal time to put a serious dent in my classwork.
About halfway through the therapy block, his first therapist tracked me down to fill me in on his progress this week. I was surprised when we arrived today because I had been told that the summer schedule would result in a therapist change due to a scheduling conflict. When she came out to talk, she filled me in. She refused to give up our son on her therapy schedule because she loves him and feels they have made a lot of progress. She told them they needed to rearrange her schedule so that she wouldn't have to lose him. I relayed to her that I was very grateful. Our son has a lot of anxiety at the moment as he anticipates his transition from elementary school to middle school. She shared that he had discussed that concern with her during their speech session. We both agreed that was a big step for him. There was a time in the past when he had trouble identifying why he was upset or what the cause of his anxiety may be. Now he can identify the source and problem solve ways to cope. These are great strides. He his growing in his confidence and in his communication skills.
Through our conversation about my son's anxiety, we started talking about concerns that his therapist has with her son. Although her son does not have developmental issues like my son and is much younger, some of the behaviors and experiences she shared sounded like our journey in the early stages. Concerns about what is really wrong. What do you do about it? How do you as a couple feel about it? Are your feelings about and methods of coping with the situation compatible and more importantly conducive to helping your child through his problems? So many of the fears, feelings, and thoughts she shared were fears, feelings, and thoughts that I had experienced years before. I was able to share with her that I understood. I had stood in her shoes. I had also felt that way. My husband had been there. His growth as a man and a father has been profound and humbling. He is a different man, a better man, than he had been ten years ago.
Several times through our conversation, she appeared close to tears. She looked tired. She looked overwhelmed. I know if I had looked in the mirror ten years ago, five years ago, maybe even a couple months ago, I might have looked the same. She told me our conversation gave her hope. It let her know that it might get better. It let her know she wasn't alone.
So maybe the answer to that second question "Why us?" was part of God's bigger plan. He wants us to share our story to help others. He wants us to grow as people but he also wants us to bring others along on our journey. Maybe our biggest challenges, fears, and hurts were meant to help others grow as families and to bring them closer to God. I know our journey has done those things for me. Our conversation today may have left her with a feeling of hope but it also helped me put our life into perspective. It allowed me to take a step back and see how very far we have come. The progress we have made. The strength we have gained. If that is his purpose, I pray he continues to maneuver me and grow me as he would want me. I pray he gives me the strength to do his work.
Sunday, June 12, 2016
Hidden Effort and Public Image
As we prepare to transition our youngest son to middle school, my husband and I have been spending a lot of time identifying where we are in the process. What success has our son found? What are his areas of need? What can we do to build on his strengths? What can we do to help him grow in his areas of weakness? I think all parents worry about these same issues. Are they doing enough? Can they do more? When your child is consistently at the bottom end of achievement of his same age peers, just on the cusp of falling behind but never quite left behind, those concerns are amplified.
One area that we have worked on consistently and diligently is our son's self control and self regulation skills. Our ultimate goal is long term independence and self reliance. Sometimes I fear that he will never be fully self sufficient. Truthfully, it is my biggest fear. When we step back to evaluate where his is and identify how far he has come, we realize that he is making progress toward our long term goal.
Life with our youngest son requires a lot of planning and managing. Has he had sufficient sleep? Does he understand the situation and his expectations for that situation? How does he feel about it? All these factors strongly influence his ability to self regulate and control his behavior. Our goal is to ultimately leave the planning and managing in his hands. He will eventually be responsible for determining if he is capable of managing a situation or if he needs to take a step back and better prepare for it.
This weekend we had an example of where he is in his self regulating journey. Because our oldest son had a parade he needed to march in with the marching band, we sent our youngest up to our cabin for work weekend a day early with his uncle. My husband supervised packing and preparing our son for the weekend. He packed and labeled his medicine, clothes, and supplies. He reviewed with him his expectations and prepared him for who would be there and what they would be doing. In other words, my husband laid the groundwork for our son to self-regulate. This involved conversations, reassurances, rehearsals, and more conversations. It took place over days with repetition of the same conversations, reassurances, rehearsals, and even more conversations. (This was for something our son was very excited to take part in.)
According to all reports, our son managed himself well. He reported that he forgot to brush his teeth and take his evening medication. He also reported that he drove the guys crazy but none of them complained to my husband about him. The guys told my husband that he kept asking all the guys to go play poker. This is his favorite thing about going to the cabin. Instead, the guys worked until late and then had a late supper. By all accounts, it seems as if he did a pretty good job of holding himself together. He even fell asleep on the way home. Yesterday was a very low key evening.
Even though our son slept in late, he woke up this morning looking for a fight. It was one of those mornings in which everything resulted in tears or an argument. There was no rationalizing or reasoning. There were just tears and frustration. As a result, we skipped church and hoped that getting his morning medicine and a nutritious breakfast in him might alter his mood. It didn't.
Our son had been invited to a swimming birthday party today. It was for one of his favorite friends. We decided to pass on the party because of his inability to swim and his increased impulsiveness this morning. Thankfully, he didn't remember the invitation. We had also been invited to go to an end of the school year picnic at a friend's river lot. We hoped that with a quiet morning at home, he might be better equipped to handle that event. His quick temper flares and unexplained crying jags made the decision for us to pass on this event as well. Instead we loaded up and headed out to take our oldest son to visit his girlfriend and her family for the day. After dropping him off, we stopped at the store to quickly grab some essentials that we were completely out of. While in the store, our son contained himself and kept himself under control. No tears. No arguing. No misbehavior. Public behavior.
When we got home, a simple text from our oldest asking if he could hold drumline practice at our house after the parade next week, launched our youngest into another crying jag. My husband and I both took turns trying to explain that it didn't mean he couldn't attend the carnival. It just meant we may have to go to the carnival on a different night or see if his grandparents would take him after the parade. There was no reasoning with him. He was irrational. In the end, he went into our bedroom, lay down, and took a three hour nap. He was spent. Done. Finished.
As he slept, my husband and I discussed the situation. In hindsight, everything we had experienced today made sense. For twenty-four hours, our youngest was solely responsible for controlling himself. For regulating his behavior. We weren't there to plan, prepare, and support. He was in control. Of himself. And for twenty-four hours, he did it. When he came home? He fell apart. It was now safe to fall apart for a little while. He could be out of control, tired, unfocused. He could be himself for a bit.
We often have people tell us how well our son does out in public. "He was so good." "He was so sweet and funny." "He did such a good job participating." I could share dozens of similar comments and conversations. I'm always relieved to hear them. I'm grateful that he does well when he's out in public. That's how he's been raised. His expectation is that while in public, he behaves like a gentleman. In public, you hold it together. Public behavior.
At home, that's his safe place. That's where the extra effort happens. If he isn't in a position to be able to control himself and behave appropriately in public, it's our job to help him regulate that situation. We either need to support him to better control himself or we need to make the decision to not put him in the position to fail in public. At home, you're always loved. At home, bad days happen and it will still be okay. At home, it's safe to fall apart and make mistakes. At home, you're always supported.
This weekend showed us that without his usual family supports being physically present, he now has the ability to self regulate for short periods of time. It also showed us that it has a toll on him. It is exhausting for him to hold himself together. But he can do it. It also shows us that the hidden efforts that we put forth on his behalf are paying off. They have an impact. They are beneficial and essential for his success. We are making progress. We also have a long way to go.
One area that we have worked on consistently and diligently is our son's self control and self regulation skills. Our ultimate goal is long term independence and self reliance. Sometimes I fear that he will never be fully self sufficient. Truthfully, it is my biggest fear. When we step back to evaluate where his is and identify how far he has come, we realize that he is making progress toward our long term goal.
Life with our youngest son requires a lot of planning and managing. Has he had sufficient sleep? Does he understand the situation and his expectations for that situation? How does he feel about it? All these factors strongly influence his ability to self regulate and control his behavior. Our goal is to ultimately leave the planning and managing in his hands. He will eventually be responsible for determining if he is capable of managing a situation or if he needs to take a step back and better prepare for it.
This weekend we had an example of where he is in his self regulating journey. Because our oldest son had a parade he needed to march in with the marching band, we sent our youngest up to our cabin for work weekend a day early with his uncle. My husband supervised packing and preparing our son for the weekend. He packed and labeled his medicine, clothes, and supplies. He reviewed with him his expectations and prepared him for who would be there and what they would be doing. In other words, my husband laid the groundwork for our son to self-regulate. This involved conversations, reassurances, rehearsals, and more conversations. It took place over days with repetition of the same conversations, reassurances, rehearsals, and even more conversations. (This was for something our son was very excited to take part in.)
According to all reports, our son managed himself well. He reported that he forgot to brush his teeth and take his evening medication. He also reported that he drove the guys crazy but none of them complained to my husband about him. The guys told my husband that he kept asking all the guys to go play poker. This is his favorite thing about going to the cabin. Instead, the guys worked until late and then had a late supper. By all accounts, it seems as if he did a pretty good job of holding himself together. He even fell asleep on the way home. Yesterday was a very low key evening.
Even though our son slept in late, he woke up this morning looking for a fight. It was one of those mornings in which everything resulted in tears or an argument. There was no rationalizing or reasoning. There were just tears and frustration. As a result, we skipped church and hoped that getting his morning medicine and a nutritious breakfast in him might alter his mood. It didn't.
Our son had been invited to a swimming birthday party today. It was for one of his favorite friends. We decided to pass on the party because of his inability to swim and his increased impulsiveness this morning. Thankfully, he didn't remember the invitation. We had also been invited to go to an end of the school year picnic at a friend's river lot. We hoped that with a quiet morning at home, he might be better equipped to handle that event. His quick temper flares and unexplained crying jags made the decision for us to pass on this event as well. Instead we loaded up and headed out to take our oldest son to visit his girlfriend and her family for the day. After dropping him off, we stopped at the store to quickly grab some essentials that we were completely out of. While in the store, our son contained himself and kept himself under control. No tears. No arguing. No misbehavior. Public behavior.
When we got home, a simple text from our oldest asking if he could hold drumline practice at our house after the parade next week, launched our youngest into another crying jag. My husband and I both took turns trying to explain that it didn't mean he couldn't attend the carnival. It just meant we may have to go to the carnival on a different night or see if his grandparents would take him after the parade. There was no reasoning with him. He was irrational. In the end, he went into our bedroom, lay down, and took a three hour nap. He was spent. Done. Finished.
As he slept, my husband and I discussed the situation. In hindsight, everything we had experienced today made sense. For twenty-four hours, our youngest was solely responsible for controlling himself. For regulating his behavior. We weren't there to plan, prepare, and support. He was in control. Of himself. And for twenty-four hours, he did it. When he came home? He fell apart. It was now safe to fall apart for a little while. He could be out of control, tired, unfocused. He could be himself for a bit.
We often have people tell us how well our son does out in public. "He was so good." "He was so sweet and funny." "He did such a good job participating." I could share dozens of similar comments and conversations. I'm always relieved to hear them. I'm grateful that he does well when he's out in public. That's how he's been raised. His expectation is that while in public, he behaves like a gentleman. In public, you hold it together. Public behavior.
At home, that's his safe place. That's where the extra effort happens. If he isn't in a position to be able to control himself and behave appropriately in public, it's our job to help him regulate that situation. We either need to support him to better control himself or we need to make the decision to not put him in the position to fail in public. At home, you're always loved. At home, bad days happen and it will still be okay. At home, it's safe to fall apart and make mistakes. At home, you're always supported.
This weekend showed us that without his usual family supports being physically present, he now has the ability to self regulate for short periods of time. It also showed us that it has a toll on him. It is exhausting for him to hold himself together. But he can do it. It also shows us that the hidden efforts that we put forth on his behalf are paying off. They have an impact. They are beneficial and essential for his success. We are making progress. We also have a long way to go.
Friday, May 13, 2016
Laughing Like A Lunatic
There was a time in our journey with our youngest son when my husband and other family members were in denial that there was anything wrong with him. It felt as if I were on the journey to find answers and solutions by myself. The solitude of that journey made me question if I was the one who was wrong about our son, his development, and his learning. Time has proven me right. Throughout our journey with our son, I have striven to be honest with myself about who we are as individuals and as a family; how I feel about our son, myself, and our family; and the effort that I have put forth. Recent events have once again made me have to take a step back and have an honest conversation with myself about our son and our reality. This hasn't been an easy conversation for me to have with myself.
The past year has been extremely stressful for me. A job transfer, a lengthy daily commute, and multiple teacher/union strikes has increased the stress of an already stressful life. I've had to rely/depend on my oldest son and husband to take over many of the responsibilities that were previously mine. Transitioning our son through his final year of elementary through a teacher maternity leave and a teacher medical leave has added to that overall level of stress. I've tried very hard to keep life moving forward but my energy is waning and my stamina is dwindling. Recently, I've felt as if I'm treading water without the ability to reach the shore.
As I stated earlier, my husband used to be in denial that our son was different from his same age peers. He felt I just needed to give our son more time to grow up. He felt he was just developing more slowly than his friends. As a trained educator, I knew what I was seeing was not typical development. Recently, it's as if my husband and I have reversed roles. Today, he sees our son clearly for who he is and how he operates in this world. He takes great joy in watching him negotiate life on his terms. On the other hand, I seem to be stuck in who I want him to be, who I imagine he can be. Recent events have made me have to face this fact with honesty.
Monday evening, my husband, son, and I went to watch some of my preschoolers play in their first t-ball game. Our youngest son was so excited to meet my co-teacher and some of my students. Once we arrived, he launched into his typical manic whirlwind of movement and talking. He touched people; stood in front of them; invaded their personal space; and talked to them without knowing who they were. My husband took it all in stride. I found myself feeling very anxious. What were people thinking? Did they notice how age inappropriate his behavior was? Did people notice his stuttering and drooling? I was so afraid that people would see his large stature and poor social skills and say or do something to hurt him. We were outside our typical circle of people who know, love and accept him. I was nervous for him. For us.
Today, we attended our son's fourth grade play. He was so excited. It was all he talked about for days. He came bouncing into the cafeteria on his toes, in full George Jefferson strut, arms waving in excitement and victory like "Here we come people. Are you ready for us?". From the time he entered the cafeteria, I was on full alert and nervous. His face was covered in marker from the marker he had all over his hands. In his excitement and nervousness, he kept fidgeting with his face, nose, and mouth. The more he fidgeted, the more marker showed up on his face. He fussed with his mask he was supposed to wear. It was up. It was down. He took his glasses out of his pocket and put them on. He took them off. He put them on. They were on the end of his nose. They were falling off. At one point, as he danced and sang, he kicked a girl in front of him. Of course it was the mean girl from the bus who delights in making him cry. She turned around and yelled at him. (Yes, in the middle of the play.) That resulted in him crumpling into a crying jag. (Yes, in the middle of the play.) I wanted to console him and tell him it was okay. I wanted to tell her to stop being so darn nasty and evil to him all the time. Instead, I sat in the audience, helpless to help him work through this moment. Fortunately, the boy beside him and the girl directly in front of him consoled him and calmed him down. They gave the mean girl dirty looks whenever she looked back at my son and smiled. They were amazing. They did what I wanted to do. They help my son work through the bad, sad moment, and come back to his joyful self.
In recent weeks, I have had to have some honest conversations with myself. Why do these moments make me so nervous? Why do they have me on the edge of my seat so to speak? A large part of it is genuine love and concern for my son. I don't want his heart to feel the hurt of other's judgment and disdain. He genuinely LOVES life and LOVES people. If you had the opportunity to meet him, you would see his true affection for everyone he meets and the joy he brings to simple daily activities. The thought of other people's hatefulness stealing that love and joy from him hurts my heart.
I also have to admit that there is a large degree of fear. Is this as good as it's going to get? Is this our normal? Is this all I can expect? Will he always be the guy that stands out in the crowd because he can't blend in? He stands too close. He talks too loud. He touches without regard for boundaries. Is this what the future holds for him? For us? Will he have a "normal" job? Will he be able to live independently? Will he be able to find love and marriage? Will he be able to hold onto his joy?
In the past, my husband was in denial and I stood strong and fought for our son. Now, my husband is a pillar of strength and resiliency as I struggle to cope with our son's reality. He laughs when I want to cry. He shrugs and moves forward as I fuss and worry. I cling to my sense of humor and laugh at the insanity that is our life. It's the only tool I have at my disposal these days. My laughter is often tinged with a trace of lunacy but at least I can still laugh. Until I regain my strength and stamina to stand beside my husband as an equal partner in this journey, I will pass the torch to him and laugh in the shadows. Better days are coming. I truly believe that. I just need to have faith and hold on until we get there.
The past year has been extremely stressful for me. A job transfer, a lengthy daily commute, and multiple teacher/union strikes has increased the stress of an already stressful life. I've had to rely/depend on my oldest son and husband to take over many of the responsibilities that were previously mine. Transitioning our son through his final year of elementary through a teacher maternity leave and a teacher medical leave has added to that overall level of stress. I've tried very hard to keep life moving forward but my energy is waning and my stamina is dwindling. Recently, I've felt as if I'm treading water without the ability to reach the shore.
As I stated earlier, my husband used to be in denial that our son was different from his same age peers. He felt I just needed to give our son more time to grow up. He felt he was just developing more slowly than his friends. As a trained educator, I knew what I was seeing was not typical development. Recently, it's as if my husband and I have reversed roles. Today, he sees our son clearly for who he is and how he operates in this world. He takes great joy in watching him negotiate life on his terms. On the other hand, I seem to be stuck in who I want him to be, who I imagine he can be. Recent events have made me have to face this fact with honesty.
Monday evening, my husband, son, and I went to watch some of my preschoolers play in their first t-ball game. Our youngest son was so excited to meet my co-teacher and some of my students. Once we arrived, he launched into his typical manic whirlwind of movement and talking. He touched people; stood in front of them; invaded their personal space; and talked to them without knowing who they were. My husband took it all in stride. I found myself feeling very anxious. What were people thinking? Did they notice how age inappropriate his behavior was? Did people notice his stuttering and drooling? I was so afraid that people would see his large stature and poor social skills and say or do something to hurt him. We were outside our typical circle of people who know, love and accept him. I was nervous for him. For us.
Today, we attended our son's fourth grade play. He was so excited. It was all he talked about for days. He came bouncing into the cafeteria on his toes, in full George Jefferson strut, arms waving in excitement and victory like "Here we come people. Are you ready for us?". From the time he entered the cafeteria, I was on full alert and nervous. His face was covered in marker from the marker he had all over his hands. In his excitement and nervousness, he kept fidgeting with his face, nose, and mouth. The more he fidgeted, the more marker showed up on his face. He fussed with his mask he was supposed to wear. It was up. It was down. He took his glasses out of his pocket and put them on. He took them off. He put them on. They were on the end of his nose. They were falling off. At one point, as he danced and sang, he kicked a girl in front of him. Of course it was the mean girl from the bus who delights in making him cry. She turned around and yelled at him. (Yes, in the middle of the play.) That resulted in him crumpling into a crying jag. (Yes, in the middle of the play.) I wanted to console him and tell him it was okay. I wanted to tell her to stop being so darn nasty and evil to him all the time. Instead, I sat in the audience, helpless to help him work through this moment. Fortunately, the boy beside him and the girl directly in front of him consoled him and calmed him down. They gave the mean girl dirty looks whenever she looked back at my son and smiled. They were amazing. They did what I wanted to do. They help my son work through the bad, sad moment, and come back to his joyful self.
In recent weeks, I have had to have some honest conversations with myself. Why do these moments make me so nervous? Why do they have me on the edge of my seat so to speak? A large part of it is genuine love and concern for my son. I don't want his heart to feel the hurt of other's judgment and disdain. He genuinely LOVES life and LOVES people. If you had the opportunity to meet him, you would see his true affection for everyone he meets and the joy he brings to simple daily activities. The thought of other people's hatefulness stealing that love and joy from him hurts my heart.
I also have to admit that there is a large degree of fear. Is this as good as it's going to get? Is this our normal? Is this all I can expect? Will he always be the guy that stands out in the crowd because he can't blend in? He stands too close. He talks too loud. He touches without regard for boundaries. Is this what the future holds for him? For us? Will he have a "normal" job? Will he be able to live independently? Will he be able to find love and marriage? Will he be able to hold onto his joy?
In the past, my husband was in denial and I stood strong and fought for our son. Now, my husband is a pillar of strength and resiliency as I struggle to cope with our son's reality. He laughs when I want to cry. He shrugs and moves forward as I fuss and worry. I cling to my sense of humor and laugh at the insanity that is our life. It's the only tool I have at my disposal these days. My laughter is often tinged with a trace of lunacy but at least I can still laugh. Until I regain my strength and stamina to stand beside my husband as an equal partner in this journey, I will pass the torch to him and laugh in the shadows. Better days are coming. I truly believe that. I just need to have faith and hold on until we get there.
Saturday, April 16, 2016
Attitude and Effort Are Everything
I'm going to offer a short disclaimer at the start of tonight's blog. I am certified in the state of Pennsylvania to teach N-3 (nursery to third grade), K-8 (kindergarten to eighth grade), and middle school and high school English and social studies. I also have my Masters in Education in Curriculum and Instruction. This is my nineteenth year teaching. The vast majority of my experience has been teaching at-risk populations of incarcerated youth. I am currently teaching Pre-K. I tell you all of that so that you understand that my opinion on this topic IS biased. I am a firm believer in the power of education. I speak the language so to speak.
Chuck Wilson is credited with saying "There are two things in life in which we have complete control... effort and attitude." We recently attended our youngest son's individualized education plan (IEP) meeting. As we left the meeting, this quote was playing through my mind. I firmly believe that our efforts and attitude have begun to positively benefit our son.
If you have read my blog in the past, you know that my husband and I have worked hard to education ourselves about our son's unique developmental cycle, learning styles and health issues. We have attempted to become experts on any topic that relates to our son and his development. To do so, we have read and researched; sought out expert advise; and asked lots and lots of questions. In addition, we have educated ourselves about the processes and steps at each stage of his life. For example, as a baby, we had to learn about home based therapy services. What qualified him or disqualified him for services? What were the steps needed for insurance to cover the costs? Which services did he need or not need? What were resources available within our area?
When he transitioned to preschool age, it required learning a whole new system and process. The qualifiers for services changed. The service providers changed. The insurance qualifiers changed. We had to learn a whole new process to meet his needs.
School brought a new system, new set of procedures, new laws, new service providers, and new people to once again familiarize with our son and his "quirks". We have learned to negotiate these changes and become advocates for his needs. Now it is time for another transition. Our son is transitioning from elementary school to middle school.
It is easy when you are negotiating all these different systems and people and processes to become overwhelmed and jaded with the process. The key is attitude. The key is effort. You need to have the attitude that we are a team working for the benefit of my child. You need to make the effort to educate yourself on the process and to be the best possible advocate for your child. When you view the people within the processes and systems as part of YOUR team for YOUR child, things get done.
When we first started the school age stage, we didn't know what we know now. We learned. One of the things that we learned is that our school year is more successful if we meet with his new education team at the start of the year to educate them about our son's unique qualities. Not everyone that has attended those meetings recognized that the information we were sharing with them would benefit them and make their job/lives easier. By the end of the school year, most of them did. We saw the looks that said "Oh boy, it's "those type of parents"." I understand those looks and thoughts because I've dealt with challenging parents. I've been where they are sitting. This difference is that I have empathy for even "those parents" because they are doing the best that they know how to advocate for their child. Attitude is everything.
Some people emphasize effort without remembering attitude. As a parent, you have to see yourselves as a team working together with the doctors, teachers, and support staff for the good of your child. If you persist with a positive attitude and put in the effort, the results will begin to pay off. For us, the results of our attitude and effort paid off in the form of a GREAT IEP that will accompany our son through his transition to middle school. It has paid off by team members paving the way for us by making contact with his new team by means of telling them to listen to us, to respect our opinions. It has paid off by the current team helping us to identify the key players in the new team to contact with questions and concerns. That doesn't just happen. Hard work and persistence make that happen.
We are transitioning to middle school with an IEP that presents a clear picture of who are son is and what he needs to be successful. It identifies the tools that have worked in the past to help him achieve his goals. It spells out in succinct and clear language what he needs and how he needs it. The care and concern for our son is clearly written in the language of that very important document.
If you are entering the school age process with a child with special needs, there are great resources our there for you to educate yourself on the process. Below are two very good resources for parents negotiating this process in the state of Pennsylvania. The Pattan website is a state sponsored resource that walks you through information you need to know about the IEP process. It also has resources linked on the right hand side on other topics that may be beneficial to you and your child. The second resource is from the Pennsylvania Department of Education. There are LOTS of other resources out there to educate yourself but I caution you to use vetted, proven, researched resources.
Find people who are willing and able to support your efforts. Find people who are willing and able to support a positive attitude when it comes to your child and his/her school. There are lots of people out there who are more than willing to listen to you vent negatively about your child's school, teachers, or administrators. Those people will not help you advance your child and his/her education agenda. Find people who will. Finally, the most important advise that I have for you is to believe in yourself as an advocate and expert on your child.
http://www.pattan.net/category/Educational%20Initiatives/Parent%20Information/page/Individualized_Education_Program_IEP.html
https://www.psea.org/general.aspx?&ekmensel=e2f22c9a_8_270_btnlink&id=496
Chuck Wilson is credited with saying "There are two things in life in which we have complete control... effort and attitude." We recently attended our youngest son's individualized education plan (IEP) meeting. As we left the meeting, this quote was playing through my mind. I firmly believe that our efforts and attitude have begun to positively benefit our son.
If you have read my blog in the past, you know that my husband and I have worked hard to education ourselves about our son's unique developmental cycle, learning styles and health issues. We have attempted to become experts on any topic that relates to our son and his development. To do so, we have read and researched; sought out expert advise; and asked lots and lots of questions. In addition, we have educated ourselves about the processes and steps at each stage of his life. For example, as a baby, we had to learn about home based therapy services. What qualified him or disqualified him for services? What were the steps needed for insurance to cover the costs? Which services did he need or not need? What were resources available within our area?
When he transitioned to preschool age, it required learning a whole new system and process. The qualifiers for services changed. The service providers changed. The insurance qualifiers changed. We had to learn a whole new process to meet his needs.
School brought a new system, new set of procedures, new laws, new service providers, and new people to once again familiarize with our son and his "quirks". We have learned to negotiate these changes and become advocates for his needs. Now it is time for another transition. Our son is transitioning from elementary school to middle school.
It is easy when you are negotiating all these different systems and people and processes to become overwhelmed and jaded with the process. The key is attitude. The key is effort. You need to have the attitude that we are a team working for the benefit of my child. You need to make the effort to educate yourself on the process and to be the best possible advocate for your child. When you view the people within the processes and systems as part of YOUR team for YOUR child, things get done.
When we first started the school age stage, we didn't know what we know now. We learned. One of the things that we learned is that our school year is more successful if we meet with his new education team at the start of the year to educate them about our son's unique qualities. Not everyone that has attended those meetings recognized that the information we were sharing with them would benefit them and make their job/lives easier. By the end of the school year, most of them did. We saw the looks that said "Oh boy, it's "those type of parents"." I understand those looks and thoughts because I've dealt with challenging parents. I've been where they are sitting. This difference is that I have empathy for even "those parents" because they are doing the best that they know how to advocate for their child. Attitude is everything.
Some people emphasize effort without remembering attitude. As a parent, you have to see yourselves as a team working together with the doctors, teachers, and support staff for the good of your child. If you persist with a positive attitude and put in the effort, the results will begin to pay off. For us, the results of our attitude and effort paid off in the form of a GREAT IEP that will accompany our son through his transition to middle school. It has paid off by team members paving the way for us by making contact with his new team by means of telling them to listen to us, to respect our opinions. It has paid off by the current team helping us to identify the key players in the new team to contact with questions and concerns. That doesn't just happen. Hard work and persistence make that happen.
We are transitioning to middle school with an IEP that presents a clear picture of who are son is and what he needs to be successful. It identifies the tools that have worked in the past to help him achieve his goals. It spells out in succinct and clear language what he needs and how he needs it. The care and concern for our son is clearly written in the language of that very important document.
If you are entering the school age process with a child with special needs, there are great resources our there for you to educate yourself on the process. Below are two very good resources for parents negotiating this process in the state of Pennsylvania. The Pattan website is a state sponsored resource that walks you through information you need to know about the IEP process. It also has resources linked on the right hand side on other topics that may be beneficial to you and your child. The second resource is from the Pennsylvania Department of Education. There are LOTS of other resources out there to educate yourself but I caution you to use vetted, proven, researched resources.
Find people who are willing and able to support your efforts. Find people who are willing and able to support a positive attitude when it comes to your child and his/her school. There are lots of people out there who are more than willing to listen to you vent negatively about your child's school, teachers, or administrators. Those people will not help you advance your child and his/her education agenda. Find people who will. Finally, the most important advise that I have for you is to believe in yourself as an advocate and expert on your child.
http://www.pattan.net/category/Educational%20Initiatives/Parent%20Information/page/Individualized_Education_Program_IEP.html
https://www.psea.org/general.aspx?&ekmensel=e2f22c9a_8_270_btnlink&id=496
Friday, February 19, 2016
Growth
After coming to the conclusion that our youngest son was in the midst of his longest developmental plateau to date, and resigning ourselves to the fact that this school year may not result in much growth, he once again changed the game. Our life with him seems to be a constant battle to see what will work for him and what will not. What will help him grow and develop? What will help him progress? What worked one week or one month isn't guaranteed to work the next. The rules seem to change like the seasons.
Fortunately, we have been seeing signs that this developmental plateau is transitioning to a minor developmental growth spurt. Our son has recently had a greater awareness of his social status among his peers. Although his blindness to this was beneficial in the past, it also kept him from having an awareness of what was really socially acceptable to his peers and what was not. It has been hard to help him negotiate this growing awareness that not everyone is his friend or has positive intentions for him. His social blindness shielded him to a large degree from peers who may have been prone to tease him or make him feel bad about his stuttering, blocking, and other less than socially acceptable behaviors. His new awareness, although painful, offers a degree of self-motivation to want to do better and change the behavior.
Until recently, our son had little interest in completing homework or staying caught up on his work. When you spend most days inside without recess because you are behind with your work, this becomes "normal" to you. Being kept inside because you are behind in your work or you need extra help, has little impact on someone who, more often than not, doesn't get the opportunity to go outside. any way. Recently, our son has taken an interest in staying caught up with his work because he has a buddy. He wants to be able to go outside and play with him and his other friends. Because of that desire to spend time with this friend, he has brought home math boxes that he should have finished in class and weren't assigned as homework. He's even snuck home essays and other writing assignments that needed re-written or finished so he wouldn't get further behind in class. This is a HUGE change. He cares about his schoolwork. He wants to do better.
Our son started the school year failing most of his reading tests and many of the class assignments. We were very concerned and questioned what we needed to do to help him do better. The education team was at a loss for recommendations because what was causing the failing grades was inconsistent. It changed from test to test. Since the Christmas break, he has been bringing home reading tests that were passing. Most recently, he has even brought home some A's and B's. Amazing! What has changed? Nothing on our end. We still read the stories with him. We still study the vocabulary words and definitions. We still help him complete the reading assignments and quiz him on the stories. We are doing nothing different.
Our son has developed a love for writing. He loves to write and act out stories and plays. He writes and performs songs. Because of this love, his aunt bought him a book of children's plays for Christmas. His grandfather made him a puppet stage and his grandmother bought him puppets. My husband and I bought him a series of puppets to add to his "actors". Our basement looks like a mad writers/actors domain. It is filled with "scenes" in the midst of action. Stuffed animals are arranged in unique vignettes waiting to be acted out. He can't get enough of being read to. His love of language and stories may account for his improvement in this area in school.
Because of his expressive language issues, it is still very painful for him to read his assignments to us. As a result, we take turns reading with him. We try to give him the shortest sections. On days when he is very jammed up with blocking and stuttering, we do almost all of the reading but spend extra time discussing the stories and questioning him on the content. I have also started looking into computer programs that help by reading the information with him/for him. He needs to expand his reading capability but with an expressive delay, it is an interesting challenge to balance these needs. We continue to explore the options available to him.
Math has been an area of strength for our son for a couple years now. Once he started "getting it", math just seemed to click for him. His ability to set up formulas and answer computation problems amazes me. He can solve puzzles and word finds and math based computer games in a way that I cannot. Timed math tests were the bane of our existence because timed anything for a child with expressive delays is a nightmare. Thankfully, this should be his last year in which he is required to complete these tests. Hopefully.
In the past, getting our son to clean up his room or the basement has been an exercise in futility and frustration. Recently, we have been able to get our son to side step his extreme agitation with the assigned task by breaking it down into small steps. For example, when faced with the need to clean up a mess, we can suggest a specific type of item to pick up first. "Go pick up all your legos first." By picking up one type of item at a time, he avoids becoming overwhelmed by the assigned task. Writing specific lists that allow him to cross off each item as he completes it, also seems to reduce his frustration.
Finally, and most importantly for those of us that live with him and love him, our son seems to be slowly developing the ability to pull back from a meltdown. In recent months, there have been several instances where he seemed to be ramping up for a meltdown but was able to successfully calm down and rationalize. He was able to work through the moment without losing complete control. His solution at one time for escaping a meltdown was to run away from us. He would physically run out the door and run around the yard, yelling and screaming. He would run upstairs and hide. He would run back to our bedroom and hide in the bathroom closet. Recently, when told to stop, don't run away, talk to us, he has had more and more moments when he could stop and work it out. For our family, this area of growth is probably the most significant. The meltdowns are the most draining and painful for us to live with. Growth in this area would have the most positive impact on our family.
Little changes can have a large effect on a family. When you watch a loved one struggle on a daily basis, it's very hard to sit by and do nothing. These signs of growth have breathed fresh air into our lives. We have lived with the frustration of this current plateau for far too long. I'm grateful for these signs. I pray they continue. Don't give up. Change could be right around the corner.
Saturday, January 16, 2016
Melt down vs. Temper Tantrum
I began writing this blog years ago as a form of therapy. I needed an outlet to voice my pain, fears, and frustration. Conversely, I felt a desire to express the great joy that comes with being the parent of such an extraordinary son as ours. As an educator, I also felt the need to educate others about children like our son. Children that seem to be stuck in the middle. They aren't "normal" but they also aren't severely "special". They are only mildly special. I wanted other parents experiencing a similar journey to know that they aren't alone. I also wanted those who sit in judgement of parents to recognize that often there are circumstances beyond their understanding. Compassion can go a very long way.
One area of parenting that seems to bring the most swift and negative judgements from others are melt down behaviors. After the morning that we experienced, I felt the need to "educate" others about the difference between a melt down and a temper tantrum. I assure you that there is a clear and definitive difference. According to the U.S. National Library of Medicine, "temper tantrums are unpleasant and disruptive behaviors or emotional outbursts. They often occur in response to unmet needs or desires. Tantrums are most likely to occur in younger children or others who cannot express their needs or control their emotions when they get frustrated." A melt down can be very different. They are not caused by a spoiled child not getting a toy or treat. It is not being told no you can't go to the zoo. Quite often, they appear to be triggered by completely innocent or even indecipherable causes. In other words, they appear to be brought on by actions that would not trigger a "normal" child to tantrum.
This morning our son woke himself up REVVED! He bound out of bed full of excitement, sound, and movement. Our oldest son reported that when he ran to the bathroom to brush his teeth, our youngest son brushed his teeth while running in place. He said his feet were moving faster than his toothbrush. As he launched himself into the day, he rushed for his Kindle and started to load a game. He brother intervened and cautioned him that he should plug his Kindle into its charger because it only had forty-five percent battery life and he would want it for the fire hall breakfast. Those words were the trigger. Not "you can't have it". Not "put that down and stop playing now". A simple reminder that it needed charged so he would have it to use for the day.
Those simple words issued for his benefit, launched our youngest so into a melt down. He started screaming and running and panicking. When I attempted to intervene, slow him down, and explain what his brother was trying to say, he began to manically fight back, pushing and screaming. His eyes were glazed over. He was repetitively saying the same phrases over and over. I asked him to cuddle with me for a few minutes. "Let's just lay down here and calm our breathing. Relax." He lay down for less than a minute, body tight, breathing escalated before he started repeating the same phrases over and over again. He couldn't pull himself out of it. He was experiencing a melt down.
Please keep in mind that this was 6 am. Six in the morning. Our day started with a complete melt down at 6 am as we prepared to go to the fire hall to volunteer for a breakfast fundraiser. At the peak of our son's meltdown, my husband quickly finished his shower, dressed, and stepped into the moment. His intervention at that moment snapped our son out of his "state" and he was able to slowly regain control.
We have often experienced that if a melt down cannot be prevented, one parent must ride the storm to the peak. If we time it correctly, the other parent can step in, state the same words or explanation that the other parent had been attempting to convey, but the intervention of a different person at just the right moment "snaps him out of it". The problem occurs when we are home alone and he goes into such a state. Unfortunately, the only solution on those occasions has been to ride out the storm until our son exhausts himself.
As my husband patiently explained the same information to our son that his older brother and I had attempted to convey to him, I silently started sobbing. It's a horrible experience. To know that your son is so out of control. To know that you are helpless to get through to him. The fear that these moments will never stop, that he will continue to get bigger and stronger and harder to manage, hurts so deep inside that you wonder if that ache will ever heal.
But it does. And life goes on. Socks and shoes get put on. Pills get taken. Coats get put on and you continue with your day. For the child, it's over. His day is still "glitchy". Things don't seem to connect or click on these days. You can see the neurological causation at work in other areas more profoundly on these days. Speech is more bumpy. Movement is less coordinated. Thinking is less focused. Impulsiveness is more prevalent. For you, these experiences are never truly over because that ache is still there. You don't know when, where, or even why the next melt down is coming.
Positives? Can there be a positive with such an experience? Today as our son ranted and raced and raved, he stated multiple times "I haven't done this for awhile. I haven't done this in a long time." There is the positive. For the first time ever, there was a verbal recognition on his part that this behavior is not okay. It is not acceptable. It must end and not be repeated. It also tells us that he has been trying to NOT melt down. He wants to do better... And he has been. He is correct. We have not had a melt down in awhile. I pray it is the last. That is always my prayer.
One area of parenting that seems to bring the most swift and negative judgements from others are melt down behaviors. After the morning that we experienced, I felt the need to "educate" others about the difference between a melt down and a temper tantrum. I assure you that there is a clear and definitive difference. According to the U.S. National Library of Medicine, "temper tantrums are unpleasant and disruptive behaviors or emotional outbursts. They often occur in response to unmet needs or desires. Tantrums are most likely to occur in younger children or others who cannot express their needs or control their emotions when they get frustrated." A melt down can be very different. They are not caused by a spoiled child not getting a toy or treat. It is not being told no you can't go to the zoo. Quite often, they appear to be triggered by completely innocent or even indecipherable causes. In other words, they appear to be brought on by actions that would not trigger a "normal" child to tantrum.
This morning our son woke himself up REVVED! He bound out of bed full of excitement, sound, and movement. Our oldest son reported that when he ran to the bathroom to brush his teeth, our youngest son brushed his teeth while running in place. He said his feet were moving faster than his toothbrush. As he launched himself into the day, he rushed for his Kindle and started to load a game. He brother intervened and cautioned him that he should plug his Kindle into its charger because it only had forty-five percent battery life and he would want it for the fire hall breakfast. Those words were the trigger. Not "you can't have it". Not "put that down and stop playing now". A simple reminder that it needed charged so he would have it to use for the day.
Those simple words issued for his benefit, launched our youngest so into a melt down. He started screaming and running and panicking. When I attempted to intervene, slow him down, and explain what his brother was trying to say, he began to manically fight back, pushing and screaming. His eyes were glazed over. He was repetitively saying the same phrases over and over. I asked him to cuddle with me for a few minutes. "Let's just lay down here and calm our breathing. Relax." He lay down for less than a minute, body tight, breathing escalated before he started repeating the same phrases over and over again. He couldn't pull himself out of it. He was experiencing a melt down.
Please keep in mind that this was 6 am. Six in the morning. Our day started with a complete melt down at 6 am as we prepared to go to the fire hall to volunteer for a breakfast fundraiser. At the peak of our son's meltdown, my husband quickly finished his shower, dressed, and stepped into the moment. His intervention at that moment snapped our son out of his "state" and he was able to slowly regain control.
We have often experienced that if a melt down cannot be prevented, one parent must ride the storm to the peak. If we time it correctly, the other parent can step in, state the same words or explanation that the other parent had been attempting to convey, but the intervention of a different person at just the right moment "snaps him out of it". The problem occurs when we are home alone and he goes into such a state. Unfortunately, the only solution on those occasions has been to ride out the storm until our son exhausts himself.
As my husband patiently explained the same information to our son that his older brother and I had attempted to convey to him, I silently started sobbing. It's a horrible experience. To know that your son is so out of control. To know that you are helpless to get through to him. The fear that these moments will never stop, that he will continue to get bigger and stronger and harder to manage, hurts so deep inside that you wonder if that ache will ever heal.
But it does. And life goes on. Socks and shoes get put on. Pills get taken. Coats get put on and you continue with your day. For the child, it's over. His day is still "glitchy". Things don't seem to connect or click on these days. You can see the neurological causation at work in other areas more profoundly on these days. Speech is more bumpy. Movement is less coordinated. Thinking is less focused. Impulsiveness is more prevalent. For you, these experiences are never truly over because that ache is still there. You don't know when, where, or even why the next melt down is coming.
Positives? Can there be a positive with such an experience? Today as our son ranted and raced and raved, he stated multiple times "I haven't done this for awhile. I haven't done this in a long time." There is the positive. For the first time ever, there was a verbal recognition on his part that this behavior is not okay. It is not acceptable. It must end and not be repeated. It also tells us that he has been trying to NOT melt down. He wants to do better... And he has been. He is correct. We have not had a melt down in awhile. I pray it is the last. That is always my prayer.
Subscribe to:
Posts (Atom)