Happy Mother's Day

I can't let Mother's Day go by this year without posting.  My perspective on mothers has changed drastically in the last year and mostly, I've grown to further respect and love the mothers I am blessed to know and have in my life.  First off, my mom is amazing.  She's such a wonderful friend to me and there is no end to her generosity.  She always listens to me, is the first to offer a hand, and shares in every joy and pain that I feel.  I am so blessed to have her in my life and thank God for her every day.

I also think of my birth mother.  For those of you who don't know, I was adopted as an infant.  My parents got me on Good Friday, when I was 11 days old.  After having 3 children, I further respect the difficult and loving decision she made to give me up for adoption.  I do hope that I'll get to meet her some day and let her know myself how much I love her for the love she had for me at such a young age.

I have met many amazing moms in the past year.  The therapy center Josh gets his OT, PT and speech services special needs children.  It is hard sometimes to see the kids who come in there, each with a parent trying to get help for their child, the majority pushing smiles through the difficulties they are overcoming raising a child with special needs.  I am inspired by so many and am a better person for meeting many amazing moms in addition to those I have had by my side for years.

Lastly, and certainly not least, I have grown in love for our Blessed Mother, Mary. As a Catholic, we ask the saints in heaven to pray for us. We read about and celebrate the lives of numerous saints who faced challenges in life, just as we do, and they perservered in faith. Danny has told the kids that the difference between saints and sinners is that when saints fall down, they get back up again. My devotion to Mary has certainly changed in the past year. In praying the rosary, I've always reflected on the life of Jesus in the mysteries of the rosary, but in the last year, I grew to see the life of Jesus through the eyes of Mary. She of all people knows how it hurts to watch your son be hurt unjustly, suffer, and feel helpless. When Josh used to be awake in pain during the night, I know her prayers were with me to help me see compassion for his pain before frustration about my lack of sleep. Who better to pray for us than the mother of Jesus who is in heaven with Him. I look to her for strength through prayer and her loving example of what true motherly love should look like.

Today, I pray for the moms I have known and loved for years and the moms I have met and their stories have stayed with me:

• For the moms who make each evening and weekend special time, after working a full day.
• For the moms who lovingly gave up their children for adoption.
• For the moms raising four children, with a joyful smile, making it look easy.
• For the moms who have been down the autism path before me, who gave their time and effort to make our journey easier.
• For the mom whose 3-year-old son overcame cancer, but suffers from developmental delays due to complications during chemotherapy.  He is currently wheelchair bound.
• For the mom with 3-year-old twins, a boy and a girl.  The girl is working on crawling, eating and talking and wears glasses and a hearing aid.  I have never met a mom with such kindness and joy while enduring such difficulty.
• For the mom with 3-year-old twins who delivered prematurely and both have undergone multiple surgeries on their heart and brain.  The boy suffers from down's.
• For the mom of a 3-year-old boy with cerebral palsy.  He brings me joy each week he comes in for occupational therapy.  His mom was told he would never walk, and he walks in each week with a big smile and his mom always says, "God is good."
• For the mom of a sweet 3-year-old girl who is learning to use her new wheelchair.  They visit me and Kate each week on their way out of therapy.
• For the mom of a 9-year-old boy who takes him in for therapy each week.  She is so kind and compassionate as they visit together in the waiting room.
• For the mom worrying about who will care for her adult child after she passes away.
• For the moms who are always looking for fun adventures to spend quality time with their kids.
• For my college friends who lost their 4th child in her second surgery after birth.  She beautifully prepared herself and family to raise a child with spina bifida.  I could never imagine burying my child, but she and her husband showed strength in faith.
• For the many autism moms and children with special needsI have met, who are giving of themselves and their lives to help their child.
• For the moms I get out with for pedicures or dinners, and the love, support and laughter we share.
• For all moms who give all they can each day out of love for their children

Happy Mother's Day!

Mommy moment

I look in the mirror and scare myself sometimes.  I finally have realized I'm closer to not 21, than I am to 21.  Then, I add in the circles that have developed below my eyes, and the fine lines around them.  I don't know why, but Emma has found it important to tell me lately that I am closer to 40 than 20.  Sigh.

Anyway, our mornings are crazy!  I cook all the ingredients for Josh each night and have moved my showers to bedtime so I can at least say I am clean each day.  When we wake up, I turn on Barney for Josh and Kate while I puree Josh's foods for the day and put blobs of it into the frying pan to make his "pancakes."  Danny and I tag team getting everyone fed, packing snacks and lunches for the day, and getting everyone dressed.  More often than not, some one requires an extra diaper change.  Emma's school starts at 8:00 and Josh has to be at some therapy each day at 8:00, except Fridays.  When 7:25 hits, I hurry to brush my teeth and hair and throw on some clothes while Danny loads the kids in the car.  The goal is to be driving by 7:30 most days.  I've given up on makeup that isn't thrown on in the car when I'm in the drop off line at Josh's school.  I think I'd have to introduce myself as Bonnie's sister if I ever showed up to therapy in makeup.

Last week, Josh had an 1 1/2 hour appointment with the allergist.  I was throwing on my clothes in my usual fashion.  I recently bought a few new tops and saw a black one I didn't recognize.  I couldn't remember buying it, but proceeded to put it on rather than the old one I wear weekly.  It seemed a little big, but I knew I couldn't credit anymore weight loss since that's come to a hault.  I was a block from Emma's school, looking down at my shirt when it dawned on me - I was wearing my black top to my new pajama set!  No time to go home.  I sat in the allergist's office for almost two hours in my pajama top.

Josh health and diet update

Thank you for your prayers for Josh! He is doing very well on the new diet now and we are going to continue moving forward with it. We had a rough start since he was not tolerating a lot of the introductory foods, but he’s now stabilized and digesting his diet of meat (restricted portions), pears, carrots, green beans, spinach, zucchini, butternut squash and avocado. We rotate out his meat so he does not have the same meat more often than every four days and in the coming weeks, we will get his fruits and veggies on a 3 day rotation. The rotation helps keep him from developing new allergies and intolerances since his immune system is prone to that. The meats I feed him are beef, chicken, turkey, lamb, pork and buffalo. Each day, I puree about a pound of meat with 7-8 cups of vegetables. I spoon the mixture onto a frying pan with a little oil and bake them into little “pancakes.” Josh will only eat them with a little browning, but he’s happy to have them each day. I serve them with boiled pears or pear sauce (home-made) and ½ an avocado. I also offer broth made from boiling the meat with vegetables. The broth is very healing to the gut. He is finally consuming some broth, but only because I put a little meat in the bottom for him to dig out and he ends up drinking a lot of the broth. It sounds like I am torturing him, but he is very happy with this new routine. I know he must feel better because he doesn’t ask for ANY of his old foods anymore. What three-year-old would be content to go to a birthday and kindly agree that they will not eat cake because it hurts their tummy? Well, it must hurt for him to agree. Anyway, it’s a lot of work to boil all these foods each day, but we’re finally getting into a groove and are happy with what we are seeing.


Josh is steadily progressing through his ABA programs. He is learning several adjectives like rough/smooth, hard/soft, big/little, hot/cold, etc.. He is learning his prepositions and continuing to work on classifying and grouping objects, utilizing them to learn WH questions. He has mastered “where” and ‘what” questions and is working on “why” questions. He struggles with the more abstract ideas like big and little and the “why” questions. He cannot understand that he is little next to Mommy, but big when he is next to Kate. He is frequently pointing at things and asking if they are big or little. I think it is interesting how his therapists teach “why” questions. Josh has been classifying objects into groups, identifying what things have in common, then working on negations, what doesn’t belong. They are now using those scenarios to ask why something doesn’t belong. For example, they will place out several cards of animals and a shirt. They will ask which does NOT belong and he will pick the shirt. Then, they ask why it doesn’t belong. He is supposed to say because it is not an animal. He is struggling with this and very frustrated that he can’t figure out what they want him to do, but he’s working hard and finally getting a few right.

At the beginning of the SCD diet change, we also ran a panel of blood work on Josh to check his IGE food allergies, liver function, mineral levels and the basic CBC testing. Our goal was to re-check nut allergies since they are a part of the later phases of SCD, and we wanted to check his liver function before we planned on doing chelation (protocol to remove toxic metals from his body). I already mentioned him being allergic to every nut you can name. We’ll continue to work with his nutritionist to create a custom diet plan. His liver checked out fine, but his thyroid levels were off and he has hypothyroidism, under-functioning thyroid. We started him on thyroid medication about 6 weeks ago and saw big gains with that as well. We decided to wait on chelating until late spring or early summer. The SCD protocol has rocked his body, but I think we rid his digestive system of a lot of bad yeast and bacteria. We have seen huge gains in language, cognition, gross and fine motor skills, social skills, AND with great excitement, I report that he sleeps through the night over 75% of the time now!!!! His bowel movements are consistently normal. That sounds gross, but it is such a relief since that is our biggest indication of how his stomach feels and to know he is properly digesting foods. It’s been a LONG time since we have seen normal diapers out of him.

Also, we actually have potty training news to discuss – a topic I didn’t imagine I would be writing about in a positive light. I attended a toilet training class for special needs the end of January. We had been trying to work with Josh on recognizing if his diaper was clean or dirty and going through the process of sitting on the potty. He used to only sit on the baby potty and I dreaded the day he actually peed on it because he was too big for there to be a chance of it going in! He was afraid of the big potty for a long time, but with the assistance of super big sister, Emma, we had him at least sitting on it. I took the training class on a Friday and by chance, the first time he actually peed on the potty was that weekend. He was so excited that he figured out what we wanted him to do! In the months since, we have moved all diaper changes to the bathroom and when we catch him going to the corner to do his business, we direct him to the bathroom. We had a roadblock when we were a few weeks into the diet changes, as it caused excessive urination. The volume was incredible and double diapering him didn’t prevent us from having to change the sheets at 3:00 AM. That has passed, for the most part, and we progressed to getting him to the potty before his usual corner times and eventually he started pooping on the potty too! We’re not close enough to go to underwear, but are very encouraged that we are progressing. He has even initiated going on his own twice in the last week. Woo hoo! I am praying we get him out of diapers before Kate is. :)

Thanks again for the prayers! We had an appointment with his nutritionist last week and at this point in time, we passed the hurdles that made us consider the elemental formula diet. Thank God! Next set of foods, here we come!

Picture of the week:  Josh wanted to wear Emma's soccer jersey.  I told him to ask her and she let him.  Emma asked me, "Mom, do you think Josh will be a tom girl?"

Happy Birthday, Kate!

I can't believe Kate has turned 1!  She has been such a blessing to our family on so many levels.  We named her Katelyn Grace for all the graces we have received since we learned she'd be joining our family.  Kate was planned by God, not us.  Several months before we found out I was pregnant, Danny received a promotion at work.  It came with a really good raise and I remember praying that God would help us to use the money how He wanted us to.  I looked into working part-time and that wasn't feasible.  We put an offer on another house.  That didn't work out.  So, God made it clear to us.  It was July 1, 2008 when I came home at lunch and took a pregnancy test and learned she was on the way.  We started saving up so I could quit working after she was born.  It was August, 2008 when we started working with ECI for Josh.  There was no doubt I needed to quit working by the time Kate was born.  She's my buddy on the run all the time.  She spends hours in the car with me, waits in therapy waiting rooms and loves to grocery shop.  She gives me reason to smile throughout the day when it's just the two of us and I'd be lonely without her.

Kate has a sweet demeanor about her, yet she's very insistent on exploring and pursuing what is on her mind.  She is an observer, then tries out what she watches without looking back.  Of the three kids, she is definitely the most verbal, which says a lot after Emma.  Kate says all of our names, is very quick to say no when I offer food she doesn't want, and loves to be in the middle of whatever Emma and Josh are doing.  She keeps my days interesting and when she is quiet for too long, I better find out what she's doing quickly!  (See below.)

Thank you, God, for our precious baby girl.  You are all good and we are thankful for the graces received through our sweet Katelyn Grace.  Amen.

Prayer request, please

A quick post.  We have been doing the Specific Carbohydrate Diet protocol for Josh for 4 weeks now.  Basically, we are severely limiting his foods to starve out bacteria and yeast in his digestive system.  We have been adding one food at a time to a very small set of introductory foods.  It is not going well.  We are seeing improvements and the yeast seems to have died off.  However, Josh is developing allergies to almost everything he is ingesting.  We received our last food allergy test results this week and he is highly allergic to every nut in existence, wheat, corn, soy, eggs, sesame seed, and on and on.  Anyway, I had an appointment with his nutritionist yesterday afternoon.  Josh is currently eating broth, meat (chicken, turkey, pork, beef in rotation), boiled pears, green beans (he won't touch) and avocados.  We have taken out the duck and quail eggs because we think he's allergic to them, and we're not certain if bananas, apples and/or carrots are a problem so they are all out until we are 5 days free of duck and quail eggs.  Zucchini made him sick, so that's out too.  Then, we'll test apples, bananas and carrots one at a time before introducing new foods.  PLEASE pray this goes well and we can start building a diet for him.  This is our last effort.  If we can't build a basic diet for him, we'll have to go to an elemental protocol.  That basically means we'll put him on liquid formula to give his GI system a rest and try to get him back on solid foods months down the road.  I'm in tears at the idea because I don't think I have that left in me to do.  I've been going crazy enough with the introductory phase of SCD and boiling foods constantly.  We need to fight his development of new food allergies.  As his nutritionist explained to me, once he develops an IgE allergy to a food, it's basically for life.  I am not giving up hope yet, but prayer is definitely needed as that is our source of hope.

Our laptop crashed and I just got it up and running again.  I owe a post about Kate's 1st birthday and what a true blessing she has been to us!  And, I hope to get an evening in to just reply to a few weeks of e-mails.  Thank you all for your prayers and support!

Bonnie

Goals and emotions

When I don't blog or e-mail, I am either fighting to keep my head above water, or I'm depressed and don't want to write. For months, it's been both. I have always felt that I need to avoid sharing the difficult side of things. I am a positive person and I always hope for the best, but that just isn't always reality. 2009 was a long year. It felt like three years.

Autism is exhausting, lonely, expensive, alienating and disheartening at times. I have not had a full night of sleep in 1 1/2 years. I am not the same person I was a year ago. Autism consumes my life. I feel like a monster sometimes, trying to figure out what happened to my son and what I can do to fix it. Last week, I found a video of Josh at 15 months. Someone was playing guitar hero. Josh was watching it, clapping, dancing along and really interacting with us. My mom asked me if that video made me sad, and it actually made me happy. I have wondered if days like that ever existed, so it was nice to find that video and validate that things really were "normal" at some point. Now, we have many sleepless nights, with a miserable son, crying, screaming, itching uncontrollably and he can't tell us what is wrong. I spend time each day racking my brain to figure out what new food he ate, what chemical he came in contact with, or what changes might have occurred to bother him. He can't tell us his stomach hurts, or that he has a headache, or that the light is hurting his eyes. The best way I can explain it is like being a first-time parent figuring out your baby's first ear infection or tooth coming in. You just have a crying baby, not sleeping at night and you have to figure out why.

My friendships have changed. Some friends don't know how to approach the subject or are obviously uncomfortable discussing our situation. Some see just enough of the 90% of the time happy child who is such a charmer with his smile and non-stop soccer dribbling. They think I'm crazy. Some friends have the perfect balance of asking questions (I try to spare details) and empathy. Some friends I have just lost touch with in all the craziness. Some people we've never told. There are several families at church that we have chatted with after Mass for years, but don't know them well enough for us to discuss what we've been going through. I wonder what they think when they ask how old he is now, and then try to have a conversation with him when he just repeats every third word he hears. I have made many new friends as well. I have met many moms of autistic children and they have been so important in keeping me going. I don't have to tell them how much it hurts to watch my child suffer at night and head-bang during the day. One I met a few weeks ago is the reason I am writing all this. She mentioned how all these feelings are here, but we're stuck feeling like we have to put on a happy face and cover how hard it is to deal with, or worry about offending those around us by talking about it. All my friendships have their place and I'm thankful to be blessed with friends. I think I just also realize that I can't bottle up all my feelings and put the weight of our world on my shoulders. Struggling to deal with autism doesn't mean we don't love our kids or don't see the good in them. It just means we're human and any parent knows it hurts more to see your child suffer than to suffer yourself.

I have spent the last month figuring out what I hope for 2010 and what are reasonable goals for the year. Here's what I have:

1. Get counseling. I need help dealing with my feelings and taking care of myself so I can remain functional for my husband and kids. I've been talking about this for months, but haven't been able to make the call. Now it's a goal, so it can only be measured by doing it or not doing it.
2. Be realistic. Rome wasn't built in a day. Josh's body didn't shut down in a day either. We have a long journey ahead of us and I praise God for the amazing progress we have seen in Josh. If Josh progresses in his lab work and assessments, then we've progressed.
3. Take the next step in Josh's dietary interventions. We've been gluten, casien and soy free for 9 months now, with limited sugar intake. Yeast overgrowth in Josh's digestive tract has been a continual problem. His doctor suggested the SCD (specific carbohydrate diet) and we started that over the weekend with the guidance of his nutritionist. Ugh. That will be the next blog post.
4. Make time for myself. I actually feel a desire to exercise! I have so much frustration built up inside of me and need a way to deal with stress. I need to make time for exercising. I need to make time to blog, email and return a few phone calls.
5. Appreciate the small victories. You might not think this is measurable, but I keep a rating of Josh's behaviors and physical well-being each day. I added a section for victories and milestones to remind myself to find the good parts too.

Sad that it took a month to come up with 5 goals, but these will keep me busy for the year. I had a follow-up appointment with Thoughtful House the last week of January. Between our treatment plan from that appointment and the push to implement SCD for Josh, my rear has been officially kicked back into gear.

It's the Holiday Season (video updated)

We celebrated Emma's 7th birthday!  I look at her and she is so much her own person now, definitely all the baby is gone (sniffle, sniffle).  I really enjoy her company and think she is an amazing big sister.  She really does love Josh and Kate and is a tremendous help to me.  I call her a little therapist for how well she works with Josh and she takes pride in that, helping him to use his words or learn new physical therapy moves.  There are times when she can calm him down from a meltdown and I've exhausted my patience.  Last week she told me, "Mommy, it really helps if you don't scream back at him."  Emma is inquisitive and loves to read.  She's really into the Magic Tree House series of books right now and is on a mission to collect all 42 of them.  She's got a good sense of humor and a laugh with no volume control!  Emma is her own person and confident in her decisions.  I admire that.  Before Thanksgiving break, her class had a Thanksgiving party planned and they were going to dress up like pilgrims and Indians.  When I picked her up that afternoon, I pulled around the corner of the pick-up line to see a little girl confidently wearing her paper apron and bonnet.  Before I could tell it was her, I knew that was my daughter.  I asked in the car if she wanted to take it off since I got to see her in it.  She said no and proceeded to wear it to pick up the dog from the groomer and for quite some time when we got home.  I would have been too self-conscious as a child to do something different than everyone else, but Emma knows what she likes and is happy to strut her stuff.  Same goes for the socks or headband that have nothing to do with her outfit, but she likes to wear.  I hope she is always so confident in what she believes in.

I like where we are at now and have long forgotten her two's, the meltdowns in that time were truly terrible well into her three's.  The testing, struggle for independence and experimentation with backtalk have subsided.  I attribute some to age, but a lot to the circumstances of this year.  Between the birth of Kate and our running around everywhere with Josh, we have all been forced to work for the common good of the family more than our own priorities.  I think it's been good for all of us.  So, we're on to the age of 7...

Getting into the holiday spirit has been slow going, but we made it through.  Our college friends lost their newborn baby right before Thanksgiving.  She was 9 days old and did not survive surgery for her spina bifida.  We went to the funeral the weekend after Thanksgiving.  It was one of the hardest things I've ever done.  I cannot imagine losing a child, but our friends handled everything with such amazing faith, strength and grace.  Sometimes, we need perspective like this to realize we don't have it so bad.

Emma nagged us to get the tree up the following week.  We got it up on a weeknight and set out the ornaments.  The next evening, she helped teach Josh how to put ornaments on the tree.  It was pretty sweet to watch.  When I looked at the tree afterward, the majority were laying on the tree rather than hanging, and there was only one ornament casualty.  I usually love Christmas, but had a hard time getting in the spirit this year.  I mailed cards a few days before Christmas and for the first time ever, had to finish shopping on Christmas Eve as a rare Texas snowfall was coming through.  Hopefully, I'll be on top of life better next year to be able to enjoy it more.

Danny's childhood friends were in town for Christmas and we were able to visit them.  Josh really takes to some people and he took to our friend, Dave, immediately.  The entire evening, I kept hearing, "Come on, Dave!  Sit down, Daddy."  Josh wanted to play with Dave.  Period.  It's hard to turn down because Josh's calls come with a huge smile and great eye contact.  Who can resist?  Dave was great with him and I think they both slept well that night after playing ball for hours.

Christmas was good.  Emma woke up a little after 7:00 and came in our room.  We sent her to wake up Josh since he'd be less likely to scream at her.  She brought him out and he picked up on the idea of opening presents very quickly.  For each gift, he requested with, "Open it." and enjoyed seeing what was inside.  Since we had a rare snowfall, the kids went out and played in it and had a ball.  We went to my parents' house that evening and Josh couldn't wait to open presents.  I had him and Emma bring the presents out into the family room.  He quickly ran back and forth between the rooms because that's what he knew he needed to do in order to open them up.  On his way back with an armful of presents, my mom got in his way and gave a commanding, "MOVE GRANDMA!"  We got quite a laugh!

Josh gave us a Christmas present.  We were waiting to eat dinner and I told him to wait for us to bless it.  Usually, when we pray at dinner time, Josh does the sign of the cross (waves his hand up and down, palm out like a priest) and folds his hands as we say the prayer, then does his cross-wave at the end.  Sometimes, he'll say "Father, Spirit, Amen" (rather than Father, Son, Holy Spirit, Amen).  Well, for Christmas, he wasn't up for waiting for everyone to sit down, so he started the prayer and said it himself.  We all cheered for him so he proceeded to say the blessing three more times and my brother got a video of one.  Most of it is unintelligible to most, but we all knew what he was doing.  It was the best gift I got for Christmas.

When we got home that evening and got the kids ready for bed, Emma said it wasn't her bedtime yet.  We were puzzled because the kitchen clock said 8:30.  She said that her bedroom clock said 7:30.  We figured Josh reset it when he played with it.  Emma got a little irritated and said, "That's why I had to wait so long to wake up this morning!"  Ha! Ha!  We just thought we were lucky she slept in.  Thanks, Josh, and we'll have to remember that for next year.

Kate has really been coming to life. Here words so far are mama, dada, Emma, ball, hi, and bye. She is pulling up on everything, likes to walk holding our hands, and is working on letting go when standing up. I'm betting she'll be our earliest walker. Emma walked just after she turned 1 and Josh walked at 15 months. Kate is still easy-going, but I see her get a kick out of making Josh scream. She'll crawl to him when he is playing with a toy. Josh will scream, get up and move a few feet away. Kate follows him and the process repeats until Josh gets tired of it and abandons the toy. At that point, Kate wants nothing to do with the toy. This sibling rivalry will be interesting, as we experienced little of it with four years between Emma and Josh.

On Christmas Eve, I was sent the link to the blog of a mom who is very active in the Texas autism community. She has a beautiful blog entry for Christmas. If you have the time, I really encourage you to read it. Many of her writings have inspired me and many others. We have our challenges and I realize that sharing Christmas with Josh was really a blessing that many families dealing with autism would give anything for. Autism is a spectrum. Children with, have such a range of abilities. Parents have such a range in attitudes and emotions in dealing with it. I only know how to cope with our situation, but I share in the emotions of other parents I have met. Michelle's blog really touched us and beautifully depicts how through suffering, we learn to truly love. 

Merry Christmas and Happy Holidays!  My New Year entry to come in 2010!