Prior to transitioning to middle school in the fall, I often worried if our youngest son spent too much time in imaginative play. He's ten years old but still loves to play with stuffed animals, puppets, manipulatives, blocks, and trains. When other children seem to be so "grown up", he seems to find comfort in playing creatively with imaginative type play. After watching his successful, responsible transition to middle school and taking a step back to observe the benefits of his play, I no longer worry. I celebrate. Maybe I even envy him a little.
As a pre-k teacher, I know the benefits of play for young children. Play is their work. True learning takes place during child directed, imaginative play. It is an essential part of appropriate developmental growth. In a world where children seem to be pushed to mature much too quickly, play seems to have become lost. When a child still engages in imaginative play, they seem to be immature according to today's standards. But the benefits we have observed from his play are incredibly important to his development and his emotional growth.
Although our son has global developmental delays, his greatest area of delay has consistently been in the areas of language, communication, and reading. In spite of that, he LOVES language, communication, and reading. He is always writing plays, stories, or poems. We frequently struggle to get him to complete a reading homework assignment but an hour later find him down in the basement writing a play for his stuffed animals to act out. Reading a chapter for homework is torture for him and for us but he wants to hear a bedtime story every single night and frequently writes his own short stories and poems. Play allows him to creatively express those thoughts, ideas, and stories that are locked inside that constantly spinning brain.
Play is often a reflection of our son's worries and concerns. Our youngest son rarely opens up and discusses what he is worried about. Instead, he tends to internalize negative emotions. Observing his play can shed insight into his thoughts and fears. For example, my husband has had several medical tests/procedures this month as the doctors attempt to find some answers regarding his health. Although we have discussed the situation with the boys, individually and as a family, our youngest son has still been worried. Recently, he has forgotten his homework agenda and assignments several times. Other behaviors showed us that he may be worrying about what was going on with his father's health. The clearest indication that we needed to get him talking and share his worries was when he started playing surgeon. This is not one of his typical imaginative play activities. Multiple times in the last week or so, we have found him in the basement wearing gloves, hovering over a "patient" as he performed surgery. Interacting with him during these moments or getting him to tell us about his play activity allowed insight into what he was thinking and feeling.
One of the greatest benefits of our son's imaginative play is the way it hones his problem solving skills. As you may have surmised, our son has almost free reign of the basement. It's his kingdom. His domain. While creating worlds of imagination, he needs to figure out what materials he has at his disposal; what he can use to realistically act out the scenario he has created in my mind; and what will most accurately create the world he is imagining. His favorite scenario is creating a classroom. It often involves seating, test tables, syllabus, worksheets, and students. Observing his classroom play provides great insight into how things are going for him at school. Another favorite activity is when he creates the Chopped kitchen. Chopped, from the Food Network, is one of his favorite shows. He often acts out the cooking competition with his stuffed animals. Surprisingly, he rarely wins the competition. Apparently Bear cooks a pretty mean dish of chili. Becoming a chef is one of his future aspirations. It's a goal he continues to push us toward. The frequency of this play scenario tells us how important it is to him.
Imaginative play allows our son to express himself and work through the tornado that spins through his mind on a daily basis. This non-structured, self-driven time allows him to relax, express himself, and be who he really is without expectations, parameters, or guidelines. There are no IEP goals. No OT, PT, or speech goals. It's just him and his imagination figuring things out together. I think I could learn a thing or two from my son. I think I need more time to play. Less time meeting other people's expectations, time restraints, and deadlines. More play. Less work. Maybe then I could learn to attack life ferociously like he does.
Saturday, October 22, 2016
Friday, September 30, 2016
The Art of Re-evaluation
It has been weeks since I last wrote about our son's transition to middle school. It was a great source of anxiety for all of us. We didn't really know what to expect from the education team, from ourselves, or from our son. There were so many questions and concerns but only time was going to show us what our son was capable of in this new setting.
Over half-way through the grading period and so far, transitioning to middle school has been an unqualified success. His first quarter progress report shows him earning all As. Conversations with his teaching team reveal that he has a positive attitude about learning and puts genuine effort into his schoolwork. He has joined beginner band and decided to play the baritone. There have been few tears or issues. He's even working on his sensory issues and trying to wear jeans every day like a big kid. So far, so good.
So why the amazing transition? How did the kiddo that started fourth grade earning a 64% in reading become the kiddo that is earning a 92% in language arts? How did the boy who couldn't remember to bring home textbooks, agendas, or papers become the young man who not only remembers all those things, but also negotiates private band lessons, PSSA remediation sessions, and OT, PT, and speech sessions, in addition to his regular education schedule? What accounts for this amazing success?
Him.
The success has always been in there.
Always.
As we transitioned to the middle school setting, we as a family needed to re-evaluate how we operated; what our priorities were; and how we were going to continue from this point forward. Truthfully, it really was a family effort. Without the four of us working together, this success would not have been possible.
My husband and I decided that we needed to take a step back. We needed to put the responsibilities of self-management squarely on our son's shoulders. We needed to let him feel some of the discomfort of NOT fitting in with his peers, NOT being responsible with classwork, and NOT behaving in age appropriate ways. This was really hard. It hurts to see your child struggle. But struggle brings growth. And grow he did! It's been amazing to watch. He's still weird. He's still not always age appropriate. He still struggles with his same age peers. But he is growing. He is succeeding.
Our oldest son decided to continue to support his brother and become a bigger source of guidance and advice. He was less patient about enabling his brother's immature behaviors. Our oldest expected his brother to step up and help out. Be mature. Be responsible. Act his age. This shift caused some conflict between them for a little bit. When you love and support each other as much as our two boys do, the conflict didn't last long. Our oldest is still his brother's biggest supporter. Our youngest still thinks his big brother can do no wrong. Making his big brother proud and marching with him in marching band during his senior year of high school (only two years away) has become one of his biggest motivators in band and in school.
The greatest shift in thinking and behavior though came from our youngest son. He identified that he no longer wished to attend out-patient therapies. It was his desire to spend that time and energy on school related activities. He wanted to prove that he could manage himself independently without these supports. And step up, he did.
When he started to fall into his old pattern of forgetting materials, we reminded him of his decisions. He did better. He hasn't forgotten his agenda or materials since that rough week three weeks ago. When he started to blow up over homework, venting his frustration on his family instead of buckling down and facing how hard it was and how frustrating it was, we sat him down and taught him how to manage his frustration. We discussed calming techniques. We decided as a team what he was going to try to manage his frustration. We practiced. We taught, practiced, and reminded. He stepped up and succeeded. Since that rough week, three weeks ago, there have been no explosions. He has gotten frustrated but regrouped, maintained, and continued without a blowup or explosion. No meltdowns. Success.
Life hasn't been perfect. It is a constant state of evaluating where we are; how we are doing; and what we need to do to continue to succeed. Parenting is like walking on a tight rope. When things get out of balance, you have to check up, re-evaluate, compensate, and move forward. Praise the positive. Look for it. Seek it out. Celebrate it. When you don't see the behaviors that you want from your child, model them. Teach them. Practice them. Re-teach them. When you see behaviors repetitively that you don't want to see, re-evaluate. What has been working? What hasn't been working? Have you taught the correct behavior? Have you recognized the success? Above all else, love. Love. Love some more.
The final component that can't be forgotten is God's Grace. When life got really frustrating, we built in time for God. We started reading daily devotionals. We prayed together. We used prayer to identify concerns. We used prayer to problem solve together. God's time. God's way. I am grateful to be part of the journey. I can't wait to see where we are headed. It's going to be an adventure.
Over half-way through the grading period and so far, transitioning to middle school has been an unqualified success. His first quarter progress report shows him earning all As. Conversations with his teaching team reveal that he has a positive attitude about learning and puts genuine effort into his schoolwork. He has joined beginner band and decided to play the baritone. There have been few tears or issues. He's even working on his sensory issues and trying to wear jeans every day like a big kid. So far, so good.
So why the amazing transition? How did the kiddo that started fourth grade earning a 64% in reading become the kiddo that is earning a 92% in language arts? How did the boy who couldn't remember to bring home textbooks, agendas, or papers become the young man who not only remembers all those things, but also negotiates private band lessons, PSSA remediation sessions, and OT, PT, and speech sessions, in addition to his regular education schedule? What accounts for this amazing success?
Him.
The success has always been in there.
Always.
As we transitioned to the middle school setting, we as a family needed to re-evaluate how we operated; what our priorities were; and how we were going to continue from this point forward. Truthfully, it really was a family effort. Without the four of us working together, this success would not have been possible.
My husband and I decided that we needed to take a step back. We needed to put the responsibilities of self-management squarely on our son's shoulders. We needed to let him feel some of the discomfort of NOT fitting in with his peers, NOT being responsible with classwork, and NOT behaving in age appropriate ways. This was really hard. It hurts to see your child struggle. But struggle brings growth. And grow he did! It's been amazing to watch. He's still weird. He's still not always age appropriate. He still struggles with his same age peers. But he is growing. He is succeeding.
Our oldest son decided to continue to support his brother and become a bigger source of guidance and advice. He was less patient about enabling his brother's immature behaviors. Our oldest expected his brother to step up and help out. Be mature. Be responsible. Act his age. This shift caused some conflict between them for a little bit. When you love and support each other as much as our two boys do, the conflict didn't last long. Our oldest is still his brother's biggest supporter. Our youngest still thinks his big brother can do no wrong. Making his big brother proud and marching with him in marching band during his senior year of high school (only two years away) has become one of his biggest motivators in band and in school.
The greatest shift in thinking and behavior though came from our youngest son. He identified that he no longer wished to attend out-patient therapies. It was his desire to spend that time and energy on school related activities. He wanted to prove that he could manage himself independently without these supports. And step up, he did.
When he started to fall into his old pattern of forgetting materials, we reminded him of his decisions. He did better. He hasn't forgotten his agenda or materials since that rough week three weeks ago. When he started to blow up over homework, venting his frustration on his family instead of buckling down and facing how hard it was and how frustrating it was, we sat him down and taught him how to manage his frustration. We discussed calming techniques. We decided as a team what he was going to try to manage his frustration. We practiced. We taught, practiced, and reminded. He stepped up and succeeded. Since that rough week, three weeks ago, there have been no explosions. He has gotten frustrated but regrouped, maintained, and continued without a blowup or explosion. No meltdowns. Success.
Life hasn't been perfect. It is a constant state of evaluating where we are; how we are doing; and what we need to do to continue to succeed. Parenting is like walking on a tight rope. When things get out of balance, you have to check up, re-evaluate, compensate, and move forward. Praise the positive. Look for it. Seek it out. Celebrate it. When you don't see the behaviors that you want from your child, model them. Teach them. Practice them. Re-teach them. When you see behaviors repetitively that you don't want to see, re-evaluate. What has been working? What hasn't been working? Have you taught the correct behavior? Have you recognized the success? Above all else, love. Love. Love some more.
The final component that can't be forgotten is God's Grace. When life got really frustrating, we built in time for God. We started reading daily devotionals. We prayed together. We used prayer to identify concerns. We used prayer to problem solve together. God's time. God's way. I am grateful to be part of the journey. I can't wait to see where we are headed. It's going to be an adventure.
Friday, July 22, 2016
Becoming Independent
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.
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.
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
Subscribe to:
Posts (Atom)