"Is that all really necessary?" the "nice lady" leaned over and asked me at the movie theater today. No ma'am. "It" as in Joseph's loud and inappropriate laughing isn't necessary. I simply said "He has autism" and then she said not once, not twice, but three times "Well then no problem." But yes madam...there is a problem. There are MANY problems. None of which I can fix and very few of them which I can even handle, deal with, or talk about without having emotional meltdown.
I could type yet another blog entry about the difficulties of being a family with a child on the spectrum. I won't bore you with my diatribe. Perhaps I could use this little corner of cyberspace to vent my feelings, disappointments and heart breaks. It really doesn't do the reader any good. I simply am going to ponder the question...."Is that all really necessary?"
That IS the question. Truthfully it's the question I've wanted to ask God and have pretended that I shouldn't, couldn't or didn't want to do so. The issue is that I don't understand. I say I do. I say I trust. I say there's got to be something good in it all and that there is a plan. Yet my heart for years has ached so deeply that at times I physically couldn't breathe. I even wrote on my prayer request card this past week a very personal request involving Joseph. Since writing those words on that tiny piece of paper my heart has been challenged, stretched and wounded several times. If I can't trust and rest in the unconditional love of my God how can I introduce Him to my children?
I say that I want people to ask questions about Joseph instead of assuming, but I really don't want that. Every time I have to answer them it is too painful. I say that I wish we could live in a world where people with autism were understood and allowed to just live at peace, yet I am not living in peace. The truth is I don't want a different world. Most of the time I want a different life. Several of the autism support sites have a saying "I wouldn't change you for the world, but I would change the world for you." I personally think that is hogwash. If I could change Joseph I would in a heartbeat. Day after day, after day of verbal abuse is truly taking it's toll on me. Weariness has attached itself to my soul and I don't' know how many more tears I have. I'm tired of wishing away, thinking about, giving mental time and attention to a life that isn't mine. I just wish I knew how to live. I wish I knew how to deeply, passionately and completely love my son JUST the way he is. It is becoming more and more evident to me that he is incapable of change. I'm tired of the years that I've wasted trying to change him and I ashamed, deeply ashamed for even trying. His siblings are sad and it is a very difficult time for the Flint family.
The big pink elephant in the room..."Is that all really necessary?". God, please hear the heart of a woman that's broken, a mother that's hurting and a daughter that believes but is begging you to help her unbelief. Show me, somehow, someway, please let me know that this has a purpose. Please help me to trust you that this life has a meaning. Please, please, please teach me that the bigger picture is one full of color and beauty. Help me to rest. That's what I really want is just to rest and please give my boy a day, just one day, just a moment of clarity where he can see you, feel you, know you because if he can experience your presence then I will know that all of this was necessary.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, July 2, 2013
Sunday, November 4, 2012
For This I Am Grateful
Day 4: "And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through Him." Colossians 3:17
Whatever I do....today I'm grateful for whatever I do and that is being a wife and mother. I am so thankful that God has called me to the high privilege of being a wife and mother. There are days I shake my fist at Him and ask...why. Why five kids? Why two sets of twins? Why a husband that struggles with depression and anxiety? Why does Joseph have autism? It is a lot on my plate, but I'm grateful. Loving these children is making me more like Him. Staying with Nathan through better or worse is causing me to love like Christ. These trials grow me, mold me, change me, break me and purify me and for THAT I'm EVER so grateful.
Whatever I do....today I'm grateful for whatever I do and that is being a wife and mother. I am so thankful that God has called me to the high privilege of being a wife and mother. There are days I shake my fist at Him and ask...why. Why five kids? Why two sets of twins? Why a husband that struggles with depression and anxiety? Why does Joseph have autism? It is a lot on my plate, but I'm grateful. Loving these children is making me more like Him. Staying with Nathan through better or worse is causing me to love like Christ. These trials grow me, mold me, change me, break me and purify me and for THAT I'm EVER so grateful.
Friday, June 22, 2012
A Big Yellow Sign
So today as I was traveling to www.randallglen.com Randall Glen Farms with my four children (minus Joseph) for a home school co-op field trip, I encountered an unusual road sign. 
I'm not sure how this sign makes me feel. There are times I feel as if I wear this sign. Every outburst, every tantrum, every food jag, every conversation dealing with a vocal tic, every tear....can often be summed up by this sign.
Lately I feel as if my life is completely consumed with and by autism. At this point in the journey of my life I'm not able to view autism as just a part of who Joseph is or a gift or even a part of a loving, Sovereign God's plan. Today I'm over it. Today I'm sad. Today I'm fearful and disappointed. Today I want something more, something different, something ELSE for Joseph and for our family.
I'm weary and tired of feeling as if I have to justify every action, every detail forgotten, every inappropriate action or conversation. My soul longs for rest and my mother's heart is broken, absolutely broken. I grieve for Joseph. I grieve for myself. I grieve for his siblings, the true, intimate, lasting relationship he won't be able to navigate/cultivate, the life I think he should have. I grieve. I question. I fail to understand or find joy. I fail.....
Such powerful emotion after almost seven years. Joseph was diagnosed when he was four and today it feels as if I am hearing that word for the first time.
Maybe I need a road sign that says "Hurting, Sad and Overwhelmed Momma Area"?
I'm not sure how this sign makes me feel. There are times I feel as if I wear this sign. Every outburst, every tantrum, every food jag, every conversation dealing with a vocal tic, every tear....can often be summed up by this sign.
Lately I feel as if my life is completely consumed with and by autism. At this point in the journey of my life I'm not able to view autism as just a part of who Joseph is or a gift or even a part of a loving, Sovereign God's plan. Today I'm over it. Today I'm sad. Today I'm fearful and disappointed. Today I want something more, something different, something ELSE for Joseph and for our family.
I'm weary and tired of feeling as if I have to justify every action, every detail forgotten, every inappropriate action or conversation. My soul longs for rest and my mother's heart is broken, absolutely broken. I grieve for Joseph. I grieve for myself. I grieve for his siblings, the true, intimate, lasting relationship he won't be able to navigate/cultivate, the life I think he should have. I grieve. I question. I fail to understand or find joy. I fail.....
Such powerful emotion after almost seven years. Joseph was diagnosed when he was four and today it feels as if I am hearing that word for the first time.
Maybe I need a road sign that says "Hurting, Sad and Overwhelmed Momma Area"?
Monday, November 29, 2010
Social Group
Joseph started participating in a social group a few weeks ago. This is an opportunity for Joseph to be with other children on the spectrum. It is a safe place to learn, grow and make mistakes without being judged. One of the goals of this group is also for him to have the opportunity to learn to make friends and to keep friends.
This group has been difficult for BOTH of us. While the kids meet with their facilitator the parents have a meeting with a behavioral psychologist. Dr. Boggs is WONDERFUL and I enjoy her immensely. However, just hearing myself say some things has been difficult and listening to other parents talk about their issues at home is hard too. All of this is exhausting to tell you the truth. Each week upon leaving the group I have cried on the way home. I honestly feel as if I am grieving Joseph's diagnosis afresh and anew. I am glad that Joseph is getting the support he needs. He has speech and occuptational therapy. He is now a part of this social group. He meets monthly with a therapist. The real issue is I don't think I'm getting the help I need!!!
What I mean by that is I need to really talk to someone about my feelings towards Joseph, about Joseph for Joseph. Having a child with autism can really take a toll on your family, your mental stability, your relationships in general AND so much more. I really think I need to talk to a counselor about all of this. Nathan and I talk quite frequently about it, but we are on MUCH different pages with the whole issue. We are in agreement when it comes to discipline, etc but emotionally we are obviously two different people.
Social group "making and keeping friends" this is an issue that I have struggled with for the last few years. Some of the people I have known the longest in my life and have shared the most with no longer even call me, text me, email me, respond to my FB posts etc. This brings me much sadness. I am working through these lost relationships/friendships. The good thing though about this is that I know that Joseph more than likely won't experience this kind of pain because he processes friendship differently. In some ways it is a BLESSING that he won't be hurt by people the way that I have been.
The two relationships that I LONG for Joseph to have are a meaningful relationship with his Creator. I pray that he will be able to love the things of the Lord. That he will be able to read, retain and understand His WORD. I desire for Joseph to be truly in love with Jesus and have a heart for Him. I also pray and hope that Joseph will know love for a spouse. I pray that he will experience love, marriage and parenthood. Big dreams for my lil' man, but I serve a BIG GOD!!!
So I don't want Joseph to be "social" just to be "social". I don't expect him to be me...a mouthy, loud at times, center of attention, charismatic kind of person. I just want Joseph to be comfortable in his own skin. I want being around other people to not bring him such anxiety and stress. I pray that he learns to communicate with others effectively and express himself openly, creatively and spontaneously. Once again....BIG STUFF.
Today we geared up for another meeting. We got out in the cold rain and drove to the Huff Center. No one else showed. I was disappointed. Joseph didn't even miss a beat. This meant mommy and Joseph time going to Chick-fil-A for a Sprite and or me a short, de-caf Christmas blend with cream from Starbucks. For you frugal people I spent less on my coffee than on Joseph's small Sprite :-) YEAH ME!!! We did have some really neat conversation in the truck. We took turns on speaking/telling stories, singing and listening to music. It was a good time that I might not have had with Joseph if he had participated in social group. Being in situations like that are taxing for him. So today I had him focused and fresh.
I am blessed to be able to work a crowd AND I am blessed to the mother of a little boy that NEVER WILL BE. Isn't life good????
This group has been difficult for BOTH of us. While the kids meet with their facilitator the parents have a meeting with a behavioral psychologist. Dr. Boggs is WONDERFUL and I enjoy her immensely. However, just hearing myself say some things has been difficult and listening to other parents talk about their issues at home is hard too. All of this is exhausting to tell you the truth. Each week upon leaving the group I have cried on the way home. I honestly feel as if I am grieving Joseph's diagnosis afresh and anew. I am glad that Joseph is getting the support he needs. He has speech and occuptational therapy. He is now a part of this social group. He meets monthly with a therapist. The real issue is I don't think I'm getting the help I need!!!
What I mean by that is I need to really talk to someone about my feelings towards Joseph, about Joseph for Joseph. Having a child with autism can really take a toll on your family, your mental stability, your relationships in general AND so much more. I really think I need to talk to a counselor about all of this. Nathan and I talk quite frequently about it, but we are on MUCH different pages with the whole issue. We are in agreement when it comes to discipline, etc but emotionally we are obviously two different people.
Social group "making and keeping friends" this is an issue that I have struggled with for the last few years. Some of the people I have known the longest in my life and have shared the most with no longer even call me, text me, email me, respond to my FB posts etc. This brings me much sadness. I am working through these lost relationships/friendships. The good thing though about this is that I know that Joseph more than likely won't experience this kind of pain because he processes friendship differently. In some ways it is a BLESSING that he won't be hurt by people the way that I have been.
The two relationships that I LONG for Joseph to have are a meaningful relationship with his Creator. I pray that he will be able to love the things of the Lord. That he will be able to read, retain and understand His WORD. I desire for Joseph to be truly in love with Jesus and have a heart for Him. I also pray and hope that Joseph will know love for a spouse. I pray that he will experience love, marriage and parenthood. Big dreams for my lil' man, but I serve a BIG GOD!!!
So I don't want Joseph to be "social" just to be "social". I don't expect him to be me...a mouthy, loud at times, center of attention, charismatic kind of person. I just want Joseph to be comfortable in his own skin. I want being around other people to not bring him such anxiety and stress. I pray that he learns to communicate with others effectively and express himself openly, creatively and spontaneously. Once again....BIG STUFF.
Today we geared up for another meeting. We got out in the cold rain and drove to the Huff Center. No one else showed. I was disappointed. Joseph didn't even miss a beat. This meant mommy and Joseph time going to Chick-fil-A for a Sprite and or me a short, de-caf Christmas blend with cream from Starbucks. For you frugal people I spent less on my coffee than on Joseph's small Sprite :-) YEAH ME!!! We did have some really neat conversation in the truck. We took turns on speaking/telling stories, singing and listening to music. It was a good time that I might not have had with Joseph if he had participated in social group. Being in situations like that are taxing for him. So today I had him focused and fresh.
I am blessed to be able to work a crowd AND I am blessed to the mother of a little boy that NEVER WILL BE. Isn't life good????
Saturday, November 14, 2009
A Heart that is Crushed...
I'm up because I have an excruciating headache, not to mention that Pizza Hut rang our doorbell at 11 pm for a pizza that we didn't order. We had been in bed over an hour. Come on the house was completely dark! Anyway.....
So I've had moments of extreme sadness and anger over Joseph and autism. I've had moments of wondering "what if". I've had some intense moments...but tonight I think I really let myself grieve.
Grieve you ask? Come on..you haven't lost a child, a husband a parent. You live in America. You have a roof over your head. You have two cars in your driveway. The list goes on and on and on my friend. Yes I "hear" you.
There was something that happened tonight that I won't go into, but let me just tell you it was AWFUL. Joseph hasn't been in a "good place" this week. Well this month. I don't know what's happening with this lil' boy, but it's been tough on all of the Flints.
I hate what I think, what I feel, what I've seen and heard. I'm tired of being terrified. I'm tired of seeing that look of panic, fear and desperation in Joseph's eyes. I'm tired of watching him hurt, be fearful and uncomfortable in his own skin. I can't answer his questions. I can't stand to hear him say things like "well I'll never be able to do...., no one will like me, I can't, but this will hurt, what if I have to go to jail because I'm bad" He gets completely irrational. I mean REALLY I've NEVER said I would take him to jail. Where does he get that from? I've NEVER said I don't like him or that no one would be his friend. Is this something he really feels, or something he's heard from a movie.
I can't "speak" Joseph. I can't understand him. I just want to be a part of his life. What is his life? What is meaningful to him? Does he know love? What will his life be like in ten years, twenty years?
I am haunted sometimes by memories of tantrums (his AND mine). I am haunted by anger, sadness, horrific attempts to "connect", times of medication, therapies, etc. Sometimes I feel as if autism has taken over our lives.
I'm ANGRY. I'm hurt. I'm scared...no TERRIFIED. I'm exhausted. I'm deeply wounded. I'm so sad. I'm bitter. I wonder how much a little boy can take. I wonder how much I can take.
My heart hurts so much sometimes I can't even breathe. I'm NOT hormonal. I'm NOT typing this because I'm pregnant. I'm broken. Totally and deeply. I am so broken, and I don't know how to put the pieces back together. I want to be whole again. I want Joseph to be whole. What is whole?
It seems like the focus is always on what Joseph can't do, what he does "wrong" or what he struggles with. I am guilty of this mindset. I'm NOT blaming or pointing fingers. I'm just confessing, expressing, ok exploding. What CAN Joseph do?
As much as I want Joseph to be healed, I want to be healed. I want my heart to change. I want my mind to change. I want my family to be touched deeply. I want to look at that little boy and love him as deeply today as I did before I knew what was "wrong". I'm so tired of knowing what is "wrong". I NEED to see something good. I need to feel something good. I need something that I can not have it seems.
How can a mother even struggle with loving her son? What is that about? I'm so hurt, and just so confused. I've tried to years to hide it. I've been in therapy. I'm in Celebrate Recovery. I've read Scripture. I've prayed. I've been prayed for by friends. I've cried out to God. I've cried until I have no more tears left. I've had months and years of being "still and quiet". I'm so over it all. I've let bits and pieces of it out over the years. I want to let it all out. I'm tired of being this way.
And then there is a deep and new fear...what if James or Jonathan is autistic. I can't EVEN begin to entertain that thought or give it creedance. I won't. I just put it out there to be honest. Being honest. That's what this is all about. Joseph's life is different, and I'm not handling "different" very well at the moment. Honestly....AUTISM SUCKS.
I don't think it was a vaccine. I don't think it was a virus. I don't think it was because I was a bad mother, or that he watched too much t.v. I don't think it was caused by environmental factors. I believe honestly that when God stepped out into the blackness known as that dark void upon the face of the earth and said "Let there be light", He knew my boy would have autism. God is and WILL be glorified in Joseph's life and I pray in mine and in the lives of our family. There is something about this life that is good, wholesome and redemptive. I know it in my deepest fibers. My faith tells me this. I just need a glimpse Lord. Please just let me see You. Let Joseph see you. Meet me in my brokenness. I'm not asking for answers. I'm just asking for Your peace that passes understanding. I'm just asking...because I have been too afraid to do so in the past. I'm asking because I don't know what else to do right now Lord.
I can hardly type through the tears, and yes this pregnant woman has to go pee. If ANYONE reads this...thank you for thinking of us and if you share my faith...would you pray for us?
So I've had moments of extreme sadness and anger over Joseph and autism. I've had moments of wondering "what if". I've had some intense moments...but tonight I think I really let myself grieve.
Grieve you ask? Come on..you haven't lost a child, a husband a parent. You live in America. You have a roof over your head. You have two cars in your driveway. The list goes on and on and on my friend. Yes I "hear" you.
There was something that happened tonight that I won't go into, but let me just tell you it was AWFUL. Joseph hasn't been in a "good place" this week. Well this month. I don't know what's happening with this lil' boy, but it's been tough on all of the Flints.
I hate what I think, what I feel, what I've seen and heard. I'm tired of being terrified. I'm tired of seeing that look of panic, fear and desperation in Joseph's eyes. I'm tired of watching him hurt, be fearful and uncomfortable in his own skin. I can't answer his questions. I can't stand to hear him say things like "well I'll never be able to do...., no one will like me, I can't, but this will hurt, what if I have to go to jail because I'm bad" He gets completely irrational. I mean REALLY I've NEVER said I would take him to jail. Where does he get that from? I've NEVER said I don't like him or that no one would be his friend. Is this something he really feels, or something he's heard from a movie.
I can't "speak" Joseph. I can't understand him. I just want to be a part of his life. What is his life? What is meaningful to him? Does he know love? What will his life be like in ten years, twenty years?
I am haunted sometimes by memories of tantrums (his AND mine). I am haunted by anger, sadness, horrific attempts to "connect", times of medication, therapies, etc. Sometimes I feel as if autism has taken over our lives.
I'm ANGRY. I'm hurt. I'm scared...no TERRIFIED. I'm exhausted. I'm deeply wounded. I'm so sad. I'm bitter. I wonder how much a little boy can take. I wonder how much I can take.
My heart hurts so much sometimes I can't even breathe. I'm NOT hormonal. I'm NOT typing this because I'm pregnant. I'm broken. Totally and deeply. I am so broken, and I don't know how to put the pieces back together. I want to be whole again. I want Joseph to be whole. What is whole?
It seems like the focus is always on what Joseph can't do, what he does "wrong" or what he struggles with. I am guilty of this mindset. I'm NOT blaming or pointing fingers. I'm just confessing, expressing, ok exploding. What CAN Joseph do?
As much as I want Joseph to be healed, I want to be healed. I want my heart to change. I want my mind to change. I want my family to be touched deeply. I want to look at that little boy and love him as deeply today as I did before I knew what was "wrong". I'm so tired of knowing what is "wrong". I NEED to see something good. I need to feel something good. I need something that I can not have it seems.
How can a mother even struggle with loving her son? What is that about? I'm so hurt, and just so confused. I've tried to years to hide it. I've been in therapy. I'm in Celebrate Recovery. I've read Scripture. I've prayed. I've been prayed for by friends. I've cried out to God. I've cried until I have no more tears left. I've had months and years of being "still and quiet". I'm so over it all. I've let bits and pieces of it out over the years. I want to let it all out. I'm tired of being this way.
And then there is a deep and new fear...what if James or Jonathan is autistic. I can't EVEN begin to entertain that thought or give it creedance. I won't. I just put it out there to be honest. Being honest. That's what this is all about. Joseph's life is different, and I'm not handling "different" very well at the moment. Honestly....AUTISM SUCKS.
I don't think it was a vaccine. I don't think it was a virus. I don't think it was because I was a bad mother, or that he watched too much t.v. I don't think it was caused by environmental factors. I believe honestly that when God stepped out into the blackness known as that dark void upon the face of the earth and said "Let there be light", He knew my boy would have autism. God is and WILL be glorified in Joseph's life and I pray in mine and in the lives of our family. There is something about this life that is good, wholesome and redemptive. I know it in my deepest fibers. My faith tells me this. I just need a glimpse Lord. Please just let me see You. Let Joseph see you. Meet me in my brokenness. I'm not asking for answers. I'm just asking for Your peace that passes understanding. I'm just asking...because I have been too afraid to do so in the past. I'm asking because I don't know what else to do right now Lord.
I can hardly type through the tears, and yes this pregnant woman has to go pee. If ANYONE reads this...thank you for thinking of us and if you share my faith...would you pray for us?
Thursday, March 12, 2009
To My Son Joseph
Today was one of those days.
I don't know how to love you adequately. I don't have enough patience, insight and wisdom to love you properly. I am frustrated. My heart pains at your dilemma to try and communicate "properly" in this crazy, fast-paced mixed up world of ours. You don't really live in this world though. Quite often I watch you as you are somewhere else. I wonder what you think of, and whom you talk to in your deepest thoughts. What are your dreams? Will they come true?
My dreams for you. I am embarassed and ashamed to say that honestly most of my dreams for you are tainted. I struggle with pride and expectations. I want so much for you, but I want so much for me too. My unmet expectations often fall on the cusp of resentment. How harsh that must sound. I am not resentful to be your mother. I am resentful that I have too high expectations for you. I am sad that I have expectations AT ALL. I wish that I could just LOVE you. Unconditionally, completely, all the time!!!
Forgive me for not being able to understand you. I have pushed you to be something you are not and were never created to be my son. I have been harsh and cruel. I haven't always been gentle and loving. I pray that due to my ignorance, pain and sadness I haven't broken the very Spirit that lives within you.
You are God's best for me Joseph. You are not a plan B. You were designed by the Master. That includes autism, sensory issues, and severe speech delays. Forgive me for hanging onto the past, a dream of what "could have" or what "should have" been. You are mine, and I vow from this day on to love you more deeply, more patiently, more intently.
I pray that I can somehow communicate to you my love, but more importantly God's love. The most important thing in this world is to know Jesus. If I can show you Jesus, than I haven't failed you.
You are in your bedroom right now crying yourself to sleep. It's been that kind of day. You are striving within your own head and heart to justify, rationalize and understand what is happening. I have blown it today. You have blown it today. But praise God that tomorrow morning His mercies are NEW!!! Let's enjoy our new day, and the one to follow, and the next, and the next.....
You are my #1 and forever will be my chocolate-eyed boy.
Your mother
--------------------------------------------------------------------
A Poem Written for You in 2006
Oh my precious little man
How can I help you understand
That Jesus feels your pain and fear
And that His love is always near
It sems that you have much to say
Oh that I could find a way
To help you let your joy shine through
So all the word could learn from you
Dark chocolate eyes that shine with wonder
Yet deep inside a distant thunder
Rumblings of a deeper kind
Oh how I long to ease your mind
Sometimes in life things will be tough
And being you will seem so rough
And yet the forming of your life takes place
In the valley of God's grace
My little man I wish I knew
What our great God has in store for you
But I know for sure His plan are good
And things are happening as they should
A time of molding, breaking, bending
Forming, healing, sculpting, mending
To shape you into the kind of boy
That shares with others a heavenly joy
They want to put on you a label
And yet I know that they're not able
To explain what's deep inside of you
The gentle spirit sweet and true
A love that's deeper than most will know
A kindness few will ever show
Dreams so grand and full of fun
You are my precious firstborn son
And though my spirit is tired and broken
No words of regret will ever be spoken
For you are precious, a gift from above
Sent to me as a display of God's love!
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