There was a beautiful young lady, who would be 26 if she was still around. She only got to live half this time - she made it to 13. She was my boyfriend's niece and she was sweet with pigtails. She had a sister who was sweet with footballs. They loved each other so much despite being so different. And then one day, feeding their horse, there was snow and a car, and she was gone.
I dealt with this about as poorly as I could. I was overwhelmed by the situation, caught up in my own self importance and issues, fearful of doing the wrong thing, not sure quite what to feel or how to act. In other words, I blew it monumentally.
At this point in my life, I have lost so many people that I cared about - some to death and some to indiscretion. To those I lost to indiscretion, I suppose there is a chance to say "I'm sorry"; to those to death, there just is this forever hole.
When Zach was conceived there was joy, when he was born there was joy, when he was baptized, there was joy, when he took his first step, more joy. There was so much hope and anticipation of a positive future. Now I realize that even though we have been running full blast, I am likely in a place that I didn't realize.
My last post led me to a website where I read several posts by fathers who lost children. I shouldn't have been able to relate, but I did. And that is when it struck me - I have been in my own state of grief for quite awhile now.
When I realized that Zach was on the spectrum, before his official diagnosis, there was an unimaginable pain. Who I thought Zach was changed - and in some way, the child I thought I had was gone.
I am embarrassed that I have been dwelling in this state for so long. I am ashamed that unlike some people, my child is still alive yet I feel like I have lost him. Is it vanity? Is it pride?
I realize that every ounce of energy I have is being given to my children, and let's be honest, a bigger chunk to Zachary over Sophia. There isn't much left over. And I will be honest that I am really hoping that all the 40 hours of therapy/working with him ourselves constantly/biomedical intervention are going to make a difference and bring him back to us. It all sounds so desperate. I am sure some think I need to be in a better place of acceptance to be in reality. Believe me, I would just accept his diagnosis and quit the insanity- if - I didn't see such a change in him these past few months.
Today, him and I giggled at one another while we made farting noises back and forth. There was eye contact. He was engaged. It was silly and typical of a 4 year old boy. The shared laughing was out of this world. Later, he sat in my lap and we played on my laptop - he found every letter in the alphabet on the keyboard as I recited. I said 'M' he entered 'X' and then laughed. A joke!
We have a ways to go. He is by no means what I imagined he would be when I first found out I was having a boy at that sonogram 5 years ago. But I feel like I am getting him back again. My sense of loss is lessening.
Yesterday, a junior at our local high school passed after a fight with cancer. Last week, during his PT session, Zach roller-skated independently! I think perspective has finally come into my life - not out of a comparison of my life to others who experienced the ultimate in loss. But because I have witnessed and shared joy with my son, which in the end is what every parent really wants from their children.
So I am thinking of Erica today. Thinking of her family. Her beautiful grown sister who has done such great things with her life. Grateful for my family. I have certainly matured these past few years. Wish I could have had the perspective I have now years ago when I could have offered more compassion to others who really needed it. That's one thing grief is good for - I am changed forever. My heart will always look at another who is in pain, and I won't run away.
Thursday, January 13, 2011
Tuesday, January 11, 2011
Breaking the Fog - Please Help
Overwhelmed with life right now. Baby steps all the way. There are good things happening. Not feeling motivated to get it all down - too much other stuff happening.
In an effort to break me out of my funk - I am hoping that helping another might actually help me get out of this gray, dreary, foggy place.
As some of you may know, a friend and coworker lost his 5 year old son due to complications of H1N1 last year. Having the fortune to hear some of his concerns and issues in his bereavement, I always felt helpless in providing him any true comfort. If this is one thing I could do to help him, I will. I cannot imagine, even with our difficulties with disability, ever having to face the day without my children. I cherish them more now than ever after considering that the loss of a child is not as rare an occurrence as I once imagined.
Help modify the Family Medical Leave Act of 1993 to include the death of a child as an additional reason to qualify for the benefits provided by this law. Help a bereaved parent to be able to take a 12 week leave of absence without the worry of losing their job.
...Let’s make a difference.
Please read the link below on another parent's story and how you can help.
http://grievingdads.wordpress.com/2011/01/09/we-can-do-this/
In an effort to break me out of my funk - I am hoping that helping another might actually help me get out of this gray, dreary, foggy place.
As some of you may know, a friend and coworker lost his 5 year old son due to complications of H1N1 last year. Having the fortune to hear some of his concerns and issues in his bereavement, I always felt helpless in providing him any true comfort. If this is one thing I could do to help him, I will. I cannot imagine, even with our difficulties with disability, ever having to face the day without my children. I cherish them more now than ever after considering that the loss of a child is not as rare an occurrence as I once imagined.
Help modify the Family Medical Leave Act of 1993 to include the death of a child as an additional reason to qualify for the benefits provided by this law. Help a bereaved parent to be able to take a 12 week leave of absence without the worry of losing their job.
...Let’s make a difference.
Please read the link below on another parent's story and how you can help.
http://grievingdads.wordpress.
Friday, December 17, 2010
CRASH!!!!!!!!!!!
Stop the world, I want to get off. The rate at which it is spinning is beyond what I can keep up with.
I was caught, rather off guard, when yesterday, with the normal craziness ensuing, I crashed. Tears running with almost no impetus, feeling despair, my blues and seasonal depression had turned categorically into something different. I was most confused by the timing of this event - nothing specifically had happened. In fact, it was our normal lunacy which I will go into below. Steve finally summed it up best I think when he responded with my what is happening remark with a - "You are spent."
I was recently asked by someone if I worked full time. I had no patience with this question, and said "I work more than full time." I knew what they meant, but I am really tired of SAHM (stay at home mothers) feeling the implication of their work not being significant on the mere difference being that we don't get a W-2 for it come time January.
Amongst the craziness now: I finished taking a class on tax preparation and found out that the job pays $8.50/hour. Seriously??? I knew I wasn't going to be making the money of my old electrical engineering days, especially for just working part time seasonally, but I found this a little too little.
The holidays are always a pressure cooker. So many expectations, so much work to try and meet those. Getting out shopping is one of the most difficult things for me. I have to be present for the therapists, and then there are those pesky after school activities, doctors appointments, and other commitments.
Can't I catch a break? Well, no. Our respite night was canceled due to weather and I was so-o-o looking forward to doing the shopping then. Did mention the 4 feet of snow we got in a week?
Speaking of things canceling/leaving/not happening: The medicaid service coordinator called - she is leaving us. Yes - Zach has supplemental insurance of Medicaid. There are major layoffs at the state level for the DSO. We have yet to get anything more than 3 copays paid for a grand total of $30 by the plan. Hee haw. Need I do the math to discuss our personal costs? Doesn't seem like it matters anymore, or that it ever did for that matter.
My mother - well she is not feeling as well as she has been. A trip to the neurosurgeon showed that the tumor on her spine (noncancerous meningioma) has not changed - so that is likely not the cause of her discomfort. Two cysts on her wrists will be attended to next week - along with the what the oncologist believes to be skin cancer on her legs. When she told me this - I knew that I was the only one she had told. A question to my sister and I realized I was correct in my assumption.
Many events to take the kids to - Lights on the Lake, Santa party for at a bounce house, holiday get togethers. There is this sort of pressure to get Zach out of the house and socialized. Therapy is going fairly well, but Zach has begun peeing all over the house. Is it behavior? Is there something medically going on?
Sophie - they have begun some interventions in the classroom - have I gotten in to see them? No. Flushed with guilt. However, we have been more attentive at home with drills and working on reading skills.
Keeping Zach's program rolling is fairly time consuming - lots of paperwork and administrivia to manage his program. 7 bodies walking in and out of the house on a daily basis.
Sleep - well what can I tell you. It could be worse, I suppose, but it also could be better. I have a call in to the GI doctor to make sure they are OK with me giving melatonin to him. I think I am ready to try it. Some say it works wonders....
I miss my Dad. This is the time of year when he had his heart attack. We were all out at a bar in December together as family. I remember every minute of it. I would give anything to see him. Especially with my children.
A recent event for parents wasn't even a break - as we entered a comedy club to take in the show, I see the guy who sexually assaulted me as a teenager. I have to sit there through the event and pretend to enjoy myself. We drove a friend, another mother, to the event. I just wanted to hightail it out of there - and she wanted to chit chat with the other parents after the show. I didn't even tell Steve until we were on our way home. As much as it was a shock to see him, I realized how it paled in comparison to some of the stuff we have been going through with our children. However, I also realized that, for this woman, some things will always stick with me.
The Christmas party for Steve's company was another awkward occasion intended to be fun - after all they did lay me off. But I actually had a lot of friends to talk to and I am so happy that things have worked out they way they have.
Now amidst all the negative, Sophia, Babcia Morphet and I had a fantastic trip to the Big Apple where we saw the Rockettes and ate dinner at the American Girl Doll store. It was phenomenal.
The basement, while going somewhat slower now, is nearing completion.
My scare with a heart murmur/mitral valve prolapse has been put to rest.
This is our normal hectic life though. Why the crash? I have no idea.
Zach had a great day of therapy today. The tears aren't flowing as readily today. Is it based on what he is up to? I realize, only a little.
No time for a breakdown at the Morphet house. In the words of Dory from the moving "Finding Nemo": "Just keep swimming." I have Christmas shopping to do!
Zach had a no mistake day so far today in the potty training department. He also made some progress in learning how to play Candy Land. His chewing gum is going great! Hilary said he mastered some more of his programs - I haven't been able to check in awhile to see what he is formally working on. Suppose I should check his program book at some point over the weekend. No breakdown today. No tears at the thought of all that is going on.
Why yesterday? I don't know.
Looking back at all that I have just written, I am amazed how much hurt and disappointment I have had to face in my life. I am even proud of how I have handled it, or at least how I persevered through it.
When I think about it, I don't cry that often, especially compared to some of my friends. Maybe that's what happened, I stored it all up for one day. CRASH! Even the word mustard would evoke tears.
I was caught, rather off guard, when yesterday, with the normal craziness ensuing, I crashed. Tears running with almost no impetus, feeling despair, my blues and seasonal depression had turned categorically into something different. I was most confused by the timing of this event - nothing specifically had happened. In fact, it was our normal lunacy which I will go into below. Steve finally summed it up best I think when he responded with my what is happening remark with a - "You are spent."
I was recently asked by someone if I worked full time. I had no patience with this question, and said "I work more than full time." I knew what they meant, but I am really tired of SAHM (stay at home mothers) feeling the implication of their work not being significant on the mere difference being that we don't get a W-2 for it come time January.
Amongst the craziness now: I finished taking a class on tax preparation and found out that the job pays $8.50/hour. Seriously??? I knew I wasn't going to be making the money of my old electrical engineering days, especially for just working part time seasonally, but I found this a little too little.
The holidays are always a pressure cooker. So many expectations, so much work to try and meet those. Getting out shopping is one of the most difficult things for me. I have to be present for the therapists, and then there are those pesky after school activities, doctors appointments, and other commitments.
Can't I catch a break? Well, no. Our respite night was canceled due to weather and I was so-o-o looking forward to doing the shopping then. Did mention the 4 feet of snow we got in a week?
Speaking of things canceling/leaving/not happening: The medicaid service coordinator called - she is leaving us. Yes - Zach has supplemental insurance of Medicaid. There are major layoffs at the state level for the DSO. We have yet to get anything more than 3 copays paid for a grand total of $30 by the plan. Hee haw. Need I do the math to discuss our personal costs? Doesn't seem like it matters anymore, or that it ever did for that matter.
My mother - well she is not feeling as well as she has been. A trip to the neurosurgeon showed that the tumor on her spine (noncancerous meningioma) has not changed - so that is likely not the cause of her discomfort. Two cysts on her wrists will be attended to next week - along with the what the oncologist believes to be skin cancer on her legs. When she told me this - I knew that I was the only one she had told. A question to my sister and I realized I was correct in my assumption.
Many events to take the kids to - Lights on the Lake, Santa party for at a bounce house, holiday get togethers. There is this sort of pressure to get Zach out of the house and socialized. Therapy is going fairly well, but Zach has begun peeing all over the house. Is it behavior? Is there something medically going on?
Sophie - they have begun some interventions in the classroom - have I gotten in to see them? No. Flushed with guilt. However, we have been more attentive at home with drills and working on reading skills.
Keeping Zach's program rolling is fairly time consuming - lots of paperwork and administrivia to manage his program. 7 bodies walking in and out of the house on a daily basis.
Sleep - well what can I tell you. It could be worse, I suppose, but it also could be better. I have a call in to the GI doctor to make sure they are OK with me giving melatonin to him. I think I am ready to try it. Some say it works wonders....
I miss my Dad. This is the time of year when he had his heart attack. We were all out at a bar in December together as family. I remember every minute of it. I would give anything to see him. Especially with my children.
A recent event for parents wasn't even a break - as we entered a comedy club to take in the show, I see the guy who sexually assaulted me as a teenager. I have to sit there through the event and pretend to enjoy myself. We drove a friend, another mother, to the event. I just wanted to hightail it out of there - and she wanted to chit chat with the other parents after the show. I didn't even tell Steve until we were on our way home. As much as it was a shock to see him, I realized how it paled in comparison to some of the stuff we have been going through with our children. However, I also realized that, for this woman, some things will always stick with me.
The Christmas party for Steve's company was another awkward occasion intended to be fun - after all they did lay me off. But I actually had a lot of friends to talk to and I am so happy that things have worked out they way they have.
Now amidst all the negative, Sophia, Babcia Morphet and I had a fantastic trip to the Big Apple where we saw the Rockettes and ate dinner at the American Girl Doll store. It was phenomenal.
The basement, while going somewhat slower now, is nearing completion.
My scare with a heart murmur/mitral valve prolapse has been put to rest.
This is our normal hectic life though. Why the crash? I have no idea.
Zach had a great day of therapy today. The tears aren't flowing as readily today. Is it based on what he is up to? I realize, only a little.
No time for a breakdown at the Morphet house. In the words of Dory from the moving "Finding Nemo": "Just keep swimming." I have Christmas shopping to do!
Zach had a no mistake day so far today in the potty training department. He also made some progress in learning how to play Candy Land. His chewing gum is going great! Hilary said he mastered some more of his programs - I haven't been able to check in awhile to see what he is formally working on. Suppose I should check his program book at some point over the weekend. No breakdown today. No tears at the thought of all that is going on.
Why yesterday? I don't know.
Looking back at all that I have just written, I am amazed how much hurt and disappointment I have had to face in my life. I am even proud of how I have handled it, or at least how I persevered through it.
When I think about it, I don't cry that often, especially compared to some of my friends. Maybe that's what happened, I stored it all up for one day. CRASH! Even the word mustard would evoke tears.
Saturday, December 11, 2010
Gum
Some posts are just going to be simpler than others. But something really surprising happened this afternoon.
Zach has been watching Sophie and I chew gum, so we gave him a piece yesterday, to which after 5 minutes of chewing, he swallowed. I told him "No swallowing! Spit! Spit it out!" I gave him another piece and only allowed him to chew it for 3 minutes, closely monitoring him, and Steve prompted him to spit it out and he did.
Cut to today. He requested a piece of gum. I gave him a piece and set the timer to ensure I could prompt. He walked over to Steve and on his own spit it into Steve's hand. He then requested another piece. I let him chew it for about 10 minutes, and then I asked him: "All done?" which he responded with a : "All done" and he spit the gum out again. My kid can chew gum! Cool!!!
So this probably seems like not big deal to some of you - but it is really cool I assure you. He got the concept while having limited language skills.
Now this brings up a concept that I might not have touched on before. When Zach attains a skill like this, I am sort of impressed with him - I know he is a capable kid (I have to admit something pretty pompous) I am in fact impressed with Steve and myself for figuring out a way to teach him. I am like "Oh my - we did that!? " You see if we were to translate Zach's disorder into something else, that might make you understand our situation better, so let me try.
Suppose Zach was blind - and I need to teach him to read. Now here is the kicker: Braille has not been invented yet. That is exactly the point we are at with Zach - we do not know quite yet what will work to teach him things, yet we know he is teachable- there are some best practices but no empirically proofed standards in this stuff, with the exception of ABA which really offers you a model of how to see if something is effective more than to provide the means to be effective. We don't want to just "try things" because that can take time and if it doesn't work in the end, then that is wasted time. We try to be as judicious about our approaches to teaching him as we are to everything else. Sometimes there is an element of flying by the seat of your pants in this stuff - we are, after all, in the wild wild west. That's what happens when science hasn't come to any decisions. (Sometimes I feel as though science has totally failed us... but that is another topic.)
But for today, my Zach chewed gum appropriately. Pretty cool don't you think?
Now that whole potty thing..... in the words of Charlie Brown "UUUUGGGGGGHHHHHHHHH!"
Zach has been watching Sophie and I chew gum, so we gave him a piece yesterday, to which after 5 minutes of chewing, he swallowed. I told him "No swallowing! Spit! Spit it out!" I gave him another piece and only allowed him to chew it for 3 minutes, closely monitoring him, and Steve prompted him to spit it out and he did.
Cut to today. He requested a piece of gum. I gave him a piece and set the timer to ensure I could prompt. He walked over to Steve and on his own spit it into Steve's hand. He then requested another piece. I let him chew it for about 10 minutes, and then I asked him: "All done?" which he responded with a : "All done" and he spit the gum out again. My kid can chew gum! Cool!!!
So this probably seems like not big deal to some of you - but it is really cool I assure you. He got the concept while having limited language skills.
Now this brings up a concept that I might not have touched on before. When Zach attains a skill like this, I am sort of impressed with him - I know he is a capable kid (I have to admit something pretty pompous) I am in fact impressed with Steve and myself for figuring out a way to teach him. I am like "Oh my - we did that!? " You see if we were to translate Zach's disorder into something else, that might make you understand our situation better, so let me try.
Suppose Zach was blind - and I need to teach him to read. Now here is the kicker: Braille has not been invented yet. That is exactly the point we are at with Zach - we do not know quite yet what will work to teach him things, yet we know he is teachable- there are some best practices but no empirically proofed standards in this stuff, with the exception of ABA which really offers you a model of how to see if something is effective more than to provide the means to be effective. We don't want to just "try things" because that can take time and if it doesn't work in the end, then that is wasted time. We try to be as judicious about our approaches to teaching him as we are to everything else. Sometimes there is an element of flying by the seat of your pants in this stuff - we are, after all, in the wild wild west. That's what happens when science hasn't come to any decisions. (Sometimes I feel as though science has totally failed us... but that is another topic.)
But for today, my Zach chewed gum appropriately. Pretty cool don't you think?
Now that whole potty thing..... in the words of Charlie Brown "UUUUGGGGGGHHHHHHHHH!"
Sunday, December 5, 2010
There's something going on up there
Had a few friends over for a playdate Saturday. Zach, being the social animal he is, promptly took an hour nap. OK. So little K (born three weeks before Zach) hung out inside with sleeping Zach and Steve while us girls headed out into the freshly fallen snow to make snow angels. OK - so I didn't get down into the snow myself, but I watched and cheered everybody else on, so that should count for something.
We eventually came in from the cold and I made hot chocolate. Zach had woken up at this point, and basically spent the afternoon watching movies with K while the girls ran around the house doing various things.
It was time for my friend to leave with her children. They were putting boots, coats, hats and mittens on and Zach began to cry, a wimpery "I'm sad" sort of cry. After asking him what was wrong - offering him food and drink and toys, I realized he was very sad that they were going. I tried to pacify him and told him that they would come back and that maybe we would go to their house sometime. I don't know if he understood what I was saying, but I cuddled with him and continued to console him and eventually he got over it.
A week ago, while watching a Thomas the Train video about Christmas, he began to cry. He just happened to cry during a very melancholy song in the video. I thought to myself, the song is sort of sad sounding - could he be responding to that? I said it aloud and Steve said "Yep - he cried during this song yesterday too!"
Steve snapped at him the other day for making a mess, and off he went to cry for a minute.
I wish I knew what he was thinking/feeling. His often aloof appearance is a big coverup to a lot more going on. I often don't consider enough that he needs to be treated like the thinking and feeling person he is. But he does. He understands far more of this world than I realize.
Being a person of science (or with some science background) I am constantly looking at the action/reaction in things. The problem is the latency factor with some of this stuff - you may not see that reaction for days after. And sometimes it is immediate. His receptive language is much better than expressive.
I can best summarize these experiences best by saying that there is something going on up in that ol' head of his beyond what he can express. Will he be able to let me know one day?
We eventually came in from the cold and I made hot chocolate. Zach had woken up at this point, and basically spent the afternoon watching movies with K while the girls ran around the house doing various things.
It was time for my friend to leave with her children. They were putting boots, coats, hats and mittens on and Zach began to cry, a wimpery "I'm sad" sort of cry. After asking him what was wrong - offering him food and drink and toys, I realized he was very sad that they were going. I tried to pacify him and told him that they would come back and that maybe we would go to their house sometime. I don't know if he understood what I was saying, but I cuddled with him and continued to console him and eventually he got over it.
A week ago, while watching a Thomas the Train video about Christmas, he began to cry. He just happened to cry during a very melancholy song in the video. I thought to myself, the song is sort of sad sounding - could he be responding to that? I said it aloud and Steve said "Yep - he cried during this song yesterday too!"
Steve snapped at him the other day for making a mess, and off he went to cry for a minute.
I wish I knew what he was thinking/feeling. His often aloof appearance is a big coverup to a lot more going on. I often don't consider enough that he needs to be treated like the thinking and feeling person he is. But he does. He understands far more of this world than I realize.
Being a person of science (or with some science background) I am constantly looking at the action/reaction in things. The problem is the latency factor with some of this stuff - you may not see that reaction for days after. And sometimes it is immediate. His receptive language is much better than expressive.
I can best summarize these experiences best by saying that there is something going on up in that ol' head of his beyond what he can express. Will he be able to let me know one day?
Thursday, December 2, 2010
Where we are right now: Acceptance???
I guess sometimes I feel like we are going no where fast. And all it takes is one reference point to let me know how wrong I am. We had Zach's 6 month appointment at the local developmental pediatrician this week. We brought along a therapist to discuss Zach and to meet our doctor.
Zach was a little antsy, but all in all, exhibited good behavior. One thing plagued Zach though. Although his appointment was at 9:30 in the morning, he had already had a 1/2 hour of OT and an hour of speech therapy that day. Due to our hectic morning, the boy had only a quick breakfast, and now he was HUNGRY. So he went rifling through the tote bag I bring along whenever I have the kids, looking for good eats while the nurses asked their routine questions. At some point, he ate every pretzel in the bag plus a brownie. The little one with the big appetite was still hungry. And then the doctor came in. I knew that Zach's concentration was on food and he was going to be fussy unless I managed to get something else to occupy his mouth. I pilfered my purse to find an organic lollipop. I did this all while attempting to answer the good doctor's questions.
We were talking about Zach and his program change from a preschool to a home program. At our last visit with Dr P, we had discussed looking into options where Zach would have preschool 1/2 day and itinerant services or somehow finding him a one-on-one aide for his program. As most of you know I just didn't seem to be able to make either of those options happen. As I discussed how we were doing pretty well with his home program, Zach continued to hound me, and I continued to unwrap the lollipop.
As I held the lollipop just out of reach, Zach made eye contact with me; he realized I was going to make him request it, and not just give it to him, even in the midst of being busy talking to the doctor. He said "lollipop" which I didn't accept, and then I continued to hold it and he finally said: "I want lollipop." and then I quickly gave it to him. I brought my attention back to the doctor who had a look of surprise.
I had no idea why he looked surprised. And he said to me "Did Zach just say a complete sentence?" and I said "yes". He then replied: "Well, I would say that it is quite a change from our last visit!" I hadn't thought about it, but it certainly is. Now mind you, this is something we work really hard on with him, and I guess knowing how much work went into this, I sort of don't find the enthusiasm that others might in hearing him utter this. I also know that he does not freely speak and that he only has a few sentences at this point in his repetoirse, all that have been discretely taught to him. He has surprised us with a few spontaneous sentences, but they are rare and not consistent.
Sometimes I let my expectations get in the way of the joys of the progress we have accomplished. This tends to diminish my hope, when it really should be a catalyst to it. I am so glad the doctor made me aware of this.
Tonight, I "caught" Zach with a book in his lap - a Thomas the Train book of course (what else would he choose for himself???) and he sat there saying "Thomas" "Percy" while pointing to them and spelling out some of the words aloud on the page. A myriad of thoughts went through my head, two images struck me the most: I thought about the expression on the doctor's face and recalled the fear we felt 2 years ago. I realized there is joy to be had in what he has accomplished and the potential that may one day be.
I think about what I want for Sophia. It is certainly different than what I would have wanted for her before we went through all this special needs stuff. I truly want Sophia to be happy. I also define achieving this happiness a lot differently. I am much less practical about it, yet more down to the basics. Practical worries? College tuition, career choices, number of friends, romantic interests. The things I strive for now? People to love and who will love in return, satisfaction and acceptance of who you are, gratefulness for being alive, a work ethic, food on the plate, a house over the head, clothes on the back and having things you enjoy in your life.
Sometimes I wonder if I have reached this place called acceptance I hear about. I am still hoping for everything, but I also know that my son's smile and his love of life have brought to me a peace that I never thought I would have. Is that acceptance of Zach's disability? Well, I think he will always have autism. But I will always try and treat it too. I will never do nothing about it, that just isn't part of my personality. But I think I do understand that those basic things that I referenced before really are what are important in this life. Maybe that is what acceptance really is; realizing what is important in this life.
Zach was a little antsy, but all in all, exhibited good behavior. One thing plagued Zach though. Although his appointment was at 9:30 in the morning, he had already had a 1/2 hour of OT and an hour of speech therapy that day. Due to our hectic morning, the boy had only a quick breakfast, and now he was HUNGRY. So he went rifling through the tote bag I bring along whenever I have the kids, looking for good eats while the nurses asked their routine questions. At some point, he ate every pretzel in the bag plus a brownie. The little one with the big appetite was still hungry. And then the doctor came in. I knew that Zach's concentration was on food and he was going to be fussy unless I managed to get something else to occupy his mouth. I pilfered my purse to find an organic lollipop. I did this all while attempting to answer the good doctor's questions.
We were talking about Zach and his program change from a preschool to a home program. At our last visit with Dr P, we had discussed looking into options where Zach would have preschool 1/2 day and itinerant services or somehow finding him a one-on-one aide for his program. As most of you know I just didn't seem to be able to make either of those options happen. As I discussed how we were doing pretty well with his home program, Zach continued to hound me, and I continued to unwrap the lollipop.
As I held the lollipop just out of reach, Zach made eye contact with me; he realized I was going to make him request it, and not just give it to him, even in the midst of being busy talking to the doctor. He said "lollipop" which I didn't accept, and then I continued to hold it and he finally said: "I want lollipop." and then I quickly gave it to him. I brought my attention back to the doctor who had a look of surprise.
I had no idea why he looked surprised. And he said to me "Did Zach just say a complete sentence?" and I said "yes". He then replied: "Well, I would say that it is quite a change from our last visit!" I hadn't thought about it, but it certainly is. Now mind you, this is something we work really hard on with him, and I guess knowing how much work went into this, I sort of don't find the enthusiasm that others might in hearing him utter this. I also know that he does not freely speak and that he only has a few sentences at this point in his repetoirse, all that have been discretely taught to him. He has surprised us with a few spontaneous sentences, but they are rare and not consistent.
Sometimes I let my expectations get in the way of the joys of the progress we have accomplished. This tends to diminish my hope, when it really should be a catalyst to it. I am so glad the doctor made me aware of this.
Tonight, I "caught" Zach with a book in his lap - a Thomas the Train book of course (what else would he choose for himself???) and he sat there saying "Thomas" "Percy" while pointing to them and spelling out some of the words aloud on the page. A myriad of thoughts went through my head, two images struck me the most: I thought about the expression on the doctor's face and recalled the fear we felt 2 years ago. I realized there is joy to be had in what he has accomplished and the potential that may one day be.
I think about what I want for Sophia. It is certainly different than what I would have wanted for her before we went through all this special needs stuff. I truly want Sophia to be happy. I also define achieving this happiness a lot differently. I am much less practical about it, yet more down to the basics. Practical worries? College tuition, career choices, number of friends, romantic interests. The things I strive for now? People to love and who will love in return, satisfaction and acceptance of who you are, gratefulness for being alive, a work ethic, food on the plate, a house over the head, clothes on the back and having things you enjoy in your life.
Sometimes I wonder if I have reached this place called acceptance I hear about. I am still hoping for everything, but I also know that my son's smile and his love of life have brought to me a peace that I never thought I would have. Is that acceptance of Zach's disability? Well, I think he will always have autism. But I will always try and treat it too. I will never do nothing about it, that just isn't part of my personality. But I think I do understand that those basic things that I referenced before really are what are important in this life. Maybe that is what acceptance really is; realizing what is important in this life.
Sunday, November 21, 2010
What Get's Me Through: Part 4 Progress; The Sweet Mysteries of Life
Progress- yes - it is one of the pillars of survival for those of us with kids with special needs. Zach has made progress - in the strangest of ways. It is never quite what we wanted, but appreciated nonetheless.
Sometimes you just cannot see the forest from the trees. I realize after reading and talking with so many other parents that it is imperative to write down where Zach is at from time to time. Thus the blog is helpful in recollecting from how far he has come. I will not lie to you, I want to write to you how he is talking above all else. As much as my heart desires this, I have learned to prioritize other skills as being just as important.
Zach still does not have much in the way of functional language. I have noticed a few of the therapists referring to him as non-verbal, which I realize after being in this as long as I have, is really not accurate. He has no real functional language - he is not conversational nor has he yet to recognize the power of words; the critical reason for verbal communication.
Another critical skill, potty training, is touch and go. Zach is pretty much schedule trained for #1, as I have written before. But #2 still has yet to be conquered. He, if wearing appropriate attire, will pull down his pants and do his business independently and dress himself afterward. He will flush, and if prompted, will wash and dry his hands appropriately. This, along with his aim, has made him heads above half the people I used to work with.
As for motor skills, he is having some success. He is doing better at alternating his feet when going up and down the stairs. He is cutting with scissors fairly well. His coloring needs to be worked on, but he is enjoying doing crafts. He even surprised me with a recent independent track on his scooter. It was only for 7 feet - but I was excited about this nonetheless.
He did something that surprised me last week, while at Babcia Morphet's house: he sat down to play Candyland with Sophie and me. It was crazy how he knew how to pick the card from the pile, look at it, and discard. He had no idea, however, which piece was his and what to do with it. This is a goal I am making for him - for him to know how to play this game with just some minor prompts. It was really cool to see that he was interested in this.
And there are the things I do not understand. Like how he went over to the neighbors house and rang the doorbell for Lord only knows what reason. I was embarrassed as my neighbor came to the door after just stepping out of the shower and all I could say is "I'm not sure why, but Zach wanted to stop by and say 'Hi!' "Sophia surmises that he wanted to swim in their pool as he walked over to our other neighbors house immediately afterward and was looking longingly at their now-closed-for-the-season pool.
Then there is ice cream. Somehow, he managed to get into our freezer and get a pint of his ice cream out and go to town. I am still perplexed how he could reach it - there were no obvious signs of climbing like a chair pulled over to the refrigerator. Motivation can make many unlikely things happen.
And then the other day, out of the blue, we were standing in the kitchen when he grabbed my hand and said "Come". I followed him as he pulled me into the family room where we arrived at a bookcase. He then said "pick me up" and I did as he gestured for something on one of the bookshelves. I looked to see a toy which I grabbed and he responded with a "nnn nnn nnnn". I put the toy back and he reached towards the back of the shelf and grabbed for himself the tin where Buddy's ashes are stored. I have no idea how he knew where this was nor did I have a clue as to why he would be interested in it at first. I showed it to him and told him that it was Buddy's ashes. I put it back on the shelf, and he gestured that he wanted it back. I gave it to him, and he cradled it in his arms. He did this twice more after I told Steve he had to see what was up.
OK - I don't really care if you think I am crazy right now: I know what Zach was telling me, and so did Steve. I said to Steve so what do you think about that? And he responded with a "We are not getting another dog until Zach learns to poop on the potty. We are not having more than one thing poop in this house at a time."
Regression is a hated word in the autism world. Children acquire skills, and are also known to lose those same skills. Hopefully for every few steps forward there is only one small step back. I would never want to go through that initial horrifying regression of Zach's where he lost his point, his eye contact, his words ever again.
I recently met a family whose children were Zach's age when they regressed into autism. I cannot imagine having your hopes dashed so late into the development stage. It was heartbreaking for me to hear about for sure. However, they are moving forward. Mom and Dad are very involved and always seem to have a smile on their faces. You just don't hear them complain. They are very inspiring to me.
So, time marches on and hopefully Zach's skills will too. I am hoping for a Christmas where he gets the concept of the holiday a little more. And maybe the mystery of Zach might be a little more revealed. Holiday miracles anyone?
Sometimes you just cannot see the forest from the trees. I realize after reading and talking with so many other parents that it is imperative to write down where Zach is at from time to time. Thus the blog is helpful in recollecting from how far he has come. I will not lie to you, I want to write to you how he is talking above all else. As much as my heart desires this, I have learned to prioritize other skills as being just as important.
Zach still does not have much in the way of functional language. I have noticed a few of the therapists referring to him as non-verbal, which I realize after being in this as long as I have, is really not accurate. He has no real functional language - he is not conversational nor has he yet to recognize the power of words; the critical reason for verbal communication.
Another critical skill, potty training, is touch and go. Zach is pretty much schedule trained for #1, as I have written before. But #2 still has yet to be conquered. He, if wearing appropriate attire, will pull down his pants and do his business independently and dress himself afterward. He will flush, and if prompted, will wash and dry his hands appropriately. This, along with his aim, has made him heads above half the people I used to work with.
As for motor skills, he is having some success. He is doing better at alternating his feet when going up and down the stairs. He is cutting with scissors fairly well. His coloring needs to be worked on, but he is enjoying doing crafts. He even surprised me with a recent independent track on his scooter. It was only for 7 feet - but I was excited about this nonetheless.
He did something that surprised me last week, while at Babcia Morphet's house: he sat down to play Candyland with Sophie and me. It was crazy how he knew how to pick the card from the pile, look at it, and discard. He had no idea, however, which piece was his and what to do with it. This is a goal I am making for him - for him to know how to play this game with just some minor prompts. It was really cool to see that he was interested in this.
And there are the things I do not understand. Like how he went over to the neighbors house and rang the doorbell for Lord only knows what reason. I was embarrassed as my neighbor came to the door after just stepping out of the shower and all I could say is "I'm not sure why, but Zach wanted to stop by and say 'Hi!' "Sophia surmises that he wanted to swim in their pool as he walked over to our other neighbors house immediately afterward and was looking longingly at their now-closed-for-the-season pool.
Then there is ice cream. Somehow, he managed to get into our freezer and get a pint of his ice cream out and go to town. I am still perplexed how he could reach it - there were no obvious signs of climbing like a chair pulled over to the refrigerator. Motivation can make many unlikely things happen.
And then the other day, out of the blue, we were standing in the kitchen when he grabbed my hand and said "Come". I followed him as he pulled me into the family room where we arrived at a bookcase. He then said "pick me up" and I did as he gestured for something on one of the bookshelves. I looked to see a toy which I grabbed and he responded with a "nnn nnn nnnn". I put the toy back and he reached towards the back of the shelf and grabbed for himself the tin where Buddy's ashes are stored. I have no idea how he knew where this was nor did I have a clue as to why he would be interested in it at first. I showed it to him and told him that it was Buddy's ashes. I put it back on the shelf, and he gestured that he wanted it back. I gave it to him, and he cradled it in his arms. He did this twice more after I told Steve he had to see what was up.
OK - I don't really care if you think I am crazy right now: I know what Zach was telling me, and so did Steve. I said to Steve so what do you think about that? And he responded with a "We are not getting another dog until Zach learns to poop on the potty. We are not having more than one thing poop in this house at a time."
Regression is a hated word in the autism world. Children acquire skills, and are also known to lose those same skills. Hopefully for every few steps forward there is only one small step back. I would never want to go through that initial horrifying regression of Zach's where he lost his point, his eye contact, his words ever again.
I recently met a family whose children were Zach's age when they regressed into autism. I cannot imagine having your hopes dashed so late into the development stage. It was heartbreaking for me to hear about for sure. However, they are moving forward. Mom and Dad are very involved and always seem to have a smile on their faces. You just don't hear them complain. They are very inspiring to me.
So, time marches on and hopefully Zach's skills will too. I am hoping for a Christmas where he gets the concept of the holiday a little more. And maybe the mystery of Zach might be a little more revealed. Holiday miracles anyone?
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