Sunday, February 28, 2010

At last......

It has been a few weeks since I have posted anything; I just haven’t had the heart to. The past 6 weeks have been absolutely grueling. Certainly the most difficult for Matthew, but excruciating for Mark and I to watch. In addition to autism, Matthew has severe ADHD. He is such a smart boy but has tremendous hyperactivity and a total inability to focus and attend. We have seen Matthew struggle so hard in this area to do things that come naturally to typical kids, it seems so unfair because we know how hard he tries. It has become more pronounced than autism lately. Honestly, we were frightened at the quick regression happening in front of us recently as well because of his ADHD. After 2 years of wrestling with the options, we came to a decision. We felt that for Matthew, the best help we could give at this time was to address his ADHD….. through medication. To that end we were willing to try this avenue in the hopes we could give Matthew some relief. His self esteem was taking a beating as everyday was a battle at school for focus and extreme hyperactivity which he was not winning and he was acutely aware of this. It breaks my heart to hear him tell me how sorry he is and that he promises to try harder. Using meds was not how we envisioned things but we tried everything we could (diet, biomedical, naturopath, homeopathy, therapy, OT, sensory integration, HBOT, supplement, herbs, etc.) to no avail. We found a wonderful doctor that was able to give us support and guidance and the courage to try this. The first 6 weeks were awful, I saw my son exhibit behaviors that we had not seen in years and even pulled him out of school because the staff was having such difficulties with him. I could see in his eyes his discouragement and frustration as the meds were initially making a tough situation much worse. I imagine he must feel like he drank and entire pot of coffee and can’t stop moving, shaking, feeling on edge and acting out. He stopped sleeping through the night and Monday I hit the wall. He woke up at 1am and could not get back to sleep. I felt such guilt! What had I done to my child? I was ready to throw in the towel.

I spoke with our doctor who encouraged me to wait one more day………Wow.!!!! The clouds went away and the sun came out. If I did not see it with my own eyes, I would have NEVER believed it. Matthew was calm (for him) and in control. The mania and frenetic behavior was gone and he seemed to be at ease. Literally, the very next day! I sent him to school the day after and his aide was in tears as she told me of the composed, calm child she was seeing. He was able to focus and soak in the events that were happening around him. His teacher was thrilled and I love seeing the smile on Matthew’s face each day since when he hears “Matthew had a GREAT day today. Good job!” from the staff. With the ability to have some calm, we have had some great language too. This was our conversation on Wednesday night:


Me: Matthew, time to go to bed.

Matthew: Mom, I jus’ wanna play with my Leapster, watch 106 (channel) and reyax (relax) on the couch.


I was so excited of course I let him. What a great sentence. I know our work is far from over, but I see the light at the end of the tunnel and it has gotten brighter every day this week. I am aware that as children grow, the chemistry in their brains change which results in certain meds becoming ineffective resulting in starting this difficult process over, however, I know that our decision was the right one and a large step forward in Matthew’s progress, regardless of how hard it may seem at the moment.

To celebrate a great weekend, I made Matthew one of his favorite desserts, GFCF chocolate covered strawberries! His face tells it all!


Matthew, you are remarkable and I love you. You have taught me so much and you inspire me. You are extraordinary and there is nothing you can’t do!

I am blessed to be your mom!

Sunday, February 7, 2010

Rainy Day Fun

Matthew was just itching to put his rain boots to use and go puddle jumping when the rain eased up. He had the best time and is waiting for it to rain so he can go again.


His smile and laugh are so contagious, it made Mark and I want to put on boots and join him.

It was such a welcomed time after a very tough week. Very tough...... I hate autism. It feels like we can never completely escape it and just when we feel like we can exhale, it comes back in full force. It just isn't fair. I know I need to be so thankful for the progress he has made, somehow it just doesn't seem enough. My son should not have to work so hard just do do the same things a typical child does without a second thought.
I see his beautiful smile and I know that we will never stop trying until his recovery is complete, in all honesty no one works harder than he does to that end.

Tuesday, February 2, 2010

Weekends

Matthew had an extra special date at the park last week.....Danny!

Matthew was so excited and as we waited, he watched every person who walked towards the park and said "Nope, not Danny yet". When he did see Danny in the distance he ran to him and it seemed that no time had passed. Danny and Matthew have a special bond. I can't imagine where Matthew would be without Danny's influence in his life. They were together Monday through Friday for over 2 years and through lots of rough days.

We love you Danny and will always be grateful for you!
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Sunday we were so excited to take Matthew to "Snow Day" at the Great Park in Irvine.....until we got there. There were HUGE lines, it was over crowded and barely any snow. Still, Matthew was happy to be there.

Matthew and Dad attempting to build a snow man with the little bit of snow they could muster.


As meager as the man made snow was, Matthew still had fun. Just check out his smile.

He thought the igloos were so cool. What a handsome boy!
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An update for HBOT, we have put it on hold for now. HBOT can increase stimming behaviors and even though we saw gains we are now struggling with stimming behaviors that we had not seen in months. Lots of perseveration, verbal stimming, echolalia and lining up of toys, etc. I guess it always feels like you take 2 steps forward and 1 or 1 1/2 steps back. I love Matthew so much and just wish it were easier for him, it hurts to see him struggle. He had an exceptionally bad day at school today and as I scolded him he said "I am sorry Mommy. I try harder. I have a hard time". Just about broke my heart. I am so proud of my incredible son and I will do whatever it takes to help you reach that amazing potential I see in your beautiful face.