My Secret Bad Days

I'm hoping that tonight's post is read and received in the light that it is intended.  I have had the idea to share this post for awhile but have repeatedly shied away for fear of how it would be interpreted.  That fact that the idea keeps nagging at me lends me the strength to overcome my fears and post it, praying that it will be received with understanding.  My intention is to shine light on a parenting truth that lies hidden away deep in a mother's heart.  I don't think that I am the only person to feel this way or to feel ashamed that I do feel this way at times.  If you can relate and it brings you some peace or if it helps you to understand and feel empathy for another parent, than I will have accomplished my goal.

One of the greatest challenges of parenting is that it is a job without end.  Having a child with special needs, medical issues, and/or learning concerns increases the intensity of that job.  Working with children all day that share similar needs/characteristics of your own child means that you live in a world immersed in the same trials without end.  You go to work and face those challenges.  You come home and continue to face those challenges.  You go to sleep for too few hours and start the process all over again.  The cycle continues without end, day after day, week after week.  Most days, you have the strength.  You love the challenge.  You thrive in the successes.  There is joy in overcoming challenges and meeting goals.  

But then there are those other days.  Those days that you don't want to talk about.  You're afraid to share those thoughts with your friends and family.  You're hesitant to speak of it to your spouse.  You barely dare to acknowledge it to yourself.  

Living with a child who finds most aspects of life a challenge can at times be like living in an abusive relationship from which you cannot escape.  Cannot.  Dare not.  They love you with every ounce of their being.  Logically you know that.  But you are their safe place.  You are the one person that they can vent to, vent on, unload on, HATE, and they know that at the end of the day, you will still be there.  Keep them safe.  Still love them.  Still help them keep it together.  Still help them move forward.  And when it's over for them, when their rage, fear, anxiety, insecurity, frustration has passed, you are left holding the pain of it.  As the parent, you must be the adult.  You must hold it together.  You must parent.  Period.  No choice.

But sometimes.  Just sometimes.  You don't want to.  

It's painful to admit.  Sometimes, when you feel ill, or have a migraine, or you're just plain tired, like deep down in your soul tired, you just don't want to.  You feel like you can't.  It's almost too much.  You're driving home thinking "I don't want to do this tonight.  I don't want to fight over homework.  I don't want to be the verbal punching bag.  I don't want to reason with an unreasonable person.  I don't want to face the blowup.  I just can't."  Then you have people tell you what a great parent you are or tell you how amazing your child is and you think "I'm a hypocrite.  It's all lies.  If they only knew!"  

But the reality is, I don't think I'm alone.  I don't think I'm the only one who has these rare but secretly awful, dreadful days.  So here's the take away.  If you have days like this from time to time, you are not alone.  If you choose to love your child through the good AND the bad, putting one foot in front of the other, and getting the hard work of parenting done, then the bad days don't win.  Your child wins.  You win.  Because each day you get them through successfully is a step towards independence, growth, and progress.  Each day you brush off the ugly and choose to laugh or find joy is a win for you and your family.  Keep fighting.  They are worth it.  You're worth it.  You CAN do this.  You are NOT alone.  

Managing Meltdowns

I want to start tonight's blog with a disclaimer -

I have a master's degree in education.  I am certified to teach N-3/K-6, English K-12, social studies K-12, and I'm "Highly Qualified" in the state of Pennsylvania to teach science K-12 in an alternative setting.  In spite of all those fancy credentials, I do NOT consider myself an expert with all the answers.  Instead, I would first and foremost consider myself a mother with a teaching background that has gained a lot of experience and knowledge along the way.  If my experience and knowledge can help another parent, then I'll feel like I've accomplished something positive.  This parenting thing isn't easy.  Parenting a child with special needs makes a complicated job even harder.  If you're a parent looking for answers and not sure where to turn, you're not in this alone.  There are lots of us on the same journey.  Maybe we can teach each other something along the way.  I know my child has been my greatest teacher.

The number one question I am asked by readers of this blog is "How do you manage a meltdown?  What can I do to prevent a meltdown?"  I've attempted to answer this question on numerous occasions but it's never a simple answer.  There are no right answers when it comes to managing these behaviors.  With that said, here's some of my "experience" and "knowledge" on that particular topic.

First, it is helpful if you can identify if the child is losing control because of a behavioral issue or because of an inability to control his/her response to stimulation or a particular situation.  For example, there is a clear difference between a child that has thrown herself on the ground and is throwing a screaming temper tantrum in the middle of the store because she was told she can't have candy and a child who has lost control because the lighting, volume, or other sensory stimulation in the store is more than she can tolerate at that moment.  In both cases, the behavior needs to be addressed and managed but identifying the source of the behavior may help you better manage the situation.

If your child is prone to meltdown behavior or tantrum behavior, I strongly recommend starting a notebook.  Write down the date, time, and location of the meltdown.  Who was present?  What was the environment like?  What was happening prior to the meltdown?  Is your child more likely to lose control at home, at school, or in public places?  Is your child more likely to lose control with you, with certain family members, with school staff, or with strangers?  Is it it more likely to occur in noisy locations?  Bright lights?  Busy locations?  Write down as many environmental factors as you can recall.  What did your child have to eat and drink that day?  What medications had your child taken?  Really take the time to document as much data as you can recall.  Hopefully by doing so, a trend will start to emerge that will help you identify a trigger that is setting off the meltdowns.

Okay.  In terms of practical, in the moment tools that can be utilized to help manage out of control behaviors, it definitely depends on the level of out of control that we are talking about.  Some kids who meltdown, hit themselves or others.  Bite themselves or others.  Run away or run and hide.  Scream and cry.  My son's eyes glaze over and lose focus.  He loses awareness that we are even there with him.  He appears to be lost in his own world.  It's hard to witness.  It can be hard to manage.

Remain calm.  Yeah, right.  Easier said than done, huh?  But really.  Remain calm.  Talk a deep breath.  Or two.  Or three.  Remember that this is not about you.  It's not personal.  This is about your child's inability to manage himself.  If you can't remain calm, you can't help him.

Talk very little.  If your child is truly melting down, he isn't even processing what you are saying.  Talking tends to escalate the situation and keeps you from remaining calm.  If you talk, use a calm voice.  Short phrases.  "Shh.  It's okay."  "Shh.  Let's just breath."  Make your voice soothing.  Model the breathing.

Touch only to maintain safety or to soothe.  If your child will allow you to hold him and rock him, then by all means use that tool to soothe.  For some children, the combination of rocking and soothing whispers helps to calm and soothe.  If physical touch further escalates your child, then only touch to keep him from hurting himself or others.  Touch can be useful as a tool to reconnect once the child is calmer but for some children, touch at that moment feels like a violation, an attempt to control.  If your child is prone to frequent meltdowns and physical violence during those meltdowns, I strongly recommend seeking out a course in Safe Crisis Management.  These classes teach de-escalation skills and safe ways to help manage your child's physical aggressiveness.  Never pin your child to the floor with your body weight.  Never tie your child up or attempt to use physical restraints in any way.  The child could be injured and the emotional trauma could increase the likelihood of future meltdowns.

As your child loses steam and starts to calm down, help her to continue to calm herself.  This is NOT the time to give consequences or discuss what started the episode.  Instead, help the child to bring herself back under control.  This may be a good time to sit beside her and talk calmly and quietly.  "That's right.  We're calming down.  Take some nice slow breathes."  If she finds it soothing, rubbing her back or giving a loose hug may reassure her that she is still loved in spite of her loss of control.  Focus on slow breathing.  Focus on calming down completely.  Some children will fall asleep afterward.  Allow her to rest.  There is plenty of time to follow up after she is in a better state of mind.

I'll get into prevention in a minute but first, follow up after a meltdown is vital.  When a child loses control, it is important to follow up to discuss what happened, to reconnect as family members, and to problem solve how to repair the situation.  These conversations should be calm and loving.  Keep the facts short and to the point.  Try not to use accusatory words and tone of voice.  When your home and life are disrupted by these episodes it's not easy to keep it impersonal but it needs to be.  The focus should remain on helping the child identify what went wrong and how to fix it.  "Before we talk, I need you to know that I love you and I'm always going to love you. When we went to the store today, we needed to leave early because you became overwhelmed by the situation.  Let's talk about what we can do differently next time."  Take the time to listen to what your child has to say.  Offer suggestions or ideas.  See how they react.  If your child is younger or lower functioning, this step may need to be kept very simple.  "I love you.  I'm sorry we had a hard time at the store today.  It hurts to see you that upset.  How does it make you feel when that happens?  I wonder what we can do differently next time to make it easier for you to go to the store and help me."  The follow up conversation is critically important to re-establish the bond that may feel bruised after an explosive episode.

In terms of preventing meltdowns, that brings us back to our earlier conversation about identifying triggers.  If you can identify what triggers your child's meltdowns, it gives you something to work with.  The intensity of some triggers such as smell or noise aversions may be reduced by slow and careful exposure in a supportive way.  You may need the assistance of professionals such as occupational therapists, therapists, learning support teachers, etc.  Some situational triggers may need careful behavior modification training.  Again, professionals may be able to assist you in identifying the best methods and techniques to achieve success.

In our experience, medication had little to no impact on reducing the frequency or intensity of our son's meltdowns.  Matter of fact, two medications that his neurology team tried actually increased his tendency for meltdowns.  We have had the greatest success with traditional behavior modification techniques.  I personally put a lot more faith in the power of prevention than in medication.  We have taught our son relaxation and calming techniques.  Through preventative conversations, we have problem solved how he should calm himself when he feels himself losing control.  Our son is a runner.  When he becomes agitated, he tends to run in circles or run and hide while repetitively muttering the same couple phrases over and over.  At one point, his desire to flee an undesirable situation would cause him to run out the door and run outside.  Our fear was that he would run out onto the road or hurt himself in his desire to flee.  We needed to problem solve as a family a better alternative to running.  Over a period of time and many, many conversations, we have increased the likelihood that our son will go crawl in my bed or go to his room until he feels calmer.  Going to his room is less successful than going to my bed because he tends to mutter to himself and work himself up when he flees to his room.  I think he associates my bed with crawling in bed with us early on a Saturday morning and cuddling.  At least I think that's why it works better.  Maybe it's a smell.  The feel of the bed.  The colors in the room.  Who knows.

This transition from melting down and/or running away didn't happen over night.  It's not a hundred percent fool proof yet but it's a step in the right direction.  This journey for self-regulation has been a work in progress.  As he has grown, the need for him to self regulate has increased.  Our son has always been big for his age.  As he continues to grow, it is evident that he will be a large man.  He must learn to regulate his emotions in order to avoid hurting himself or others.  This is part of the conversation that we as a family have frequently had with him.

Read everything that you can find from reliable resources.  Websites ending in .edu are associated with a school and .gov are associated with the government.  These websites are most likely to be vetted and reliable.  Nationally recognized and respected organizations such as Autism Speaks may be a good source of information.  Consult with school and medical resources.  Join a parent support group.  Finally, if you are struggling with meltdowns, know that you are not alone.


http://www.childcarequarterly.com/pdf/winter12_eci.pdf
http://www.autismspeaks.org/docs/100_day_kit_for_school_age_children_final_small.pdf
*Your child may not have autism but this resource shares some great information and other valuable resources.

Do You Resent Your Child?

If you have been following our journey, you know that since transitioning to middle school in the fall, our youngest son has experienced phenomenal growth.  This time of maturing and adapting has given us hope that some day we may reach that elusive goal of "normal".  Because in spite of professing to accept and love our son for who he is, recent events have made me have to face the fact that I still want our life to be just that.  I want our life to be normal.

To say that our son's transition to middle school was a source of anxiety for all of us would be an understatement.  We were dreading it.  When he made the transition successfully, we started to hope.  After his new learning support teacher resigned to take a position in a different school district three weeks into the new school year, we held our breath.  Not only did this change in personnel, not affect his school performance and progress, it seemed to challenge him to be even more independent.  This step in maturity gave us even greater hope.  He was managing school work, in school therapy sessions, and band practice.  To imagine that all of this could be possible with so little coaching and micro-managing our our part, blew our minds.  When he finished the first quarter with all As, placing him on the distinguished honor roll, something inside of me clicked.  In my mind, we had made it.  We were experiencing normal.  We could only go up from here.

Little did I know that the tide was about to turn.  Three weeks ago, as I sat blogging about the amazing progress that our son has experienced since transitioning to middle school, our son's body was once again preparing to throw him back into a regression.  As I've discussed in the past, our son's developmental cycle involves pronounced and often exaggerated periods of growth, followed by plateaus and often even greater regressions.  These periods of regression involve an increase in stuttering, blocking, drooling, and chewing on non-food items such as clothing and pencils.  It also involves a decrease in motor planning, executive functioning skills, and concentration/focus.  Up until recently, this cycle was our normal.  It's something that we had learned to accept and manage.

During our son's regression periods, he often becomes frustrated with himself and his situation.  In turn, he becomes frustrated with us as we attempt to help him manage as he becomes incapable of managing independently.  He resents our assistance because he craves independence.  As our son progressed into this most recent regression period, he and I began to butt heads.  It seemed like he and I were arguing or frustrated with one another on a daily basis.  I typically find the humor in even the darkest of days.  For the last couple weeks, I found very little to laugh about when it came to dealing with my son.  We loved each other but we couldn't seem to be civil to one another.  Ironically, it was my job as a teacher that made me see the light.  And when I did, I was very ashamed of myself.

As I've said more than once in the past, throughout our journey with our youngest son, I have always promised myself that I would be honest with him, our family, and myself about our reality.  One day, while problem solving a solution to a recurring issue with one of my students, it occurred to me that I have not been honest with myself.  I've been hiding the truth because it isn't a very pretty one.  I resented my son.  I did.  I resented my son for daring to regress.  For taking away our new normal.  For struggling.

The truth of that realization hurt deeply.  Our son is struggling to hold it all together.  To keep maintaining.  To talk.  To read.  To learn.  To coordinate his body movements.  To make and keep friends.  To be as normal as he can be.  As I resented him deep down inside as he struggled and dared to regress.  That moment of truth literally took my breath away and brought me to tears.  This period of growth and my pride in his growth had felt REALLY good.  Matter of fact, it had felt exceptional.  It had felt "normal".

Improbably, during this period of regression, our son is finding success.  We attended his parent/teacher conference at school and his teaching team had nothing but positive things to say about him.  They love him.  He is forgetting and losing things more frequently than he had previously but he's maintaining.  His grades have dropped slightly in the past two weeks but he is maintaining.

At a recent social event we hosted at our home, he became over stimulated and as we attempted to help him calm down, he started to meltdown.  In front of everyone.  It was embarrassing.  My husband was eventually able to get him to walk away from the group in an attempt to help him calm down, when our son stopped and offered a solution.  Out of no where, he asked if he could go play in his basement for a little until he was calmer.  This was the first time our son has ever offered a solution to help calm himself in the midst of a meltdown.  Talk about growth.  If and when, we repeat that moment, we are on the road to self-regulation.  When he begins to be able to self-regulate, we work toward preventing the need to self-regulate.  Will he eventually be able to calm down or walk away from an over stimulating situation when he perceives other people's reactions to his energy or behavior?  This is a long term goal we are working toward.

It's always easy to take pride in my oldest son.  He's good looking, smart, funny, and most importantly, he's a genuinely good kid.  My youngest son is adorable.  He's also smart, funny, and a genuinely good kid.  My moment of honesty made me take a step back and realize that I have even greater reasons to be proud of our youngest son.  He is resilient.  He never gives up and never stops trying.  He loves school and learning like no one else I know in spite of all his challenges.  He LOVES life and finds the joy in everything.  People around him feel better after spending time with him.  He's funny.  He can come back with a witty, clever one-liner faster than most adults that I know.  He loves to harass, tease, and laugh with people.  I've seen him make even the most irritable and grouchy individual smile.  He has empathy and genuine care and concern for everyone.  If someone is upset, hurt, or lonely, our son feels for them and will attempt to help them feel better.  Who wouldn't take pride in a child like that?

So what's the take away in this story?  After identifying my hidden resentment of my son and his most recent regression, I purposely changed my attitude.  I strove to find the humor in the situation again.  I chose to recognize the wonderful things that my son is doing in his daily life.  I worked to change my interactions with him for the positive.  Not surprisingly, the dynamic in our interactions has changed.  Our interactions aren't fairy tale perfect but they are positive and loving and healthy again.  As the adults in our family relationships, we CHOOSE how we respond to our loved ones.  Do we choose love?  Do we look for the positive?  Can we be honest with ourselves about how we feel about our loved ones and choose to behave and feel differently?

Do you sometimes resent your child?  If you do, you CAN do something about it.  You can change the dynamic and make it more loving again.  More importantly, if you do, you're not alone.  You aren't in this alone.

The Importance of Play

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.

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.

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.

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.