Thursday, April 30, 2009

talk to me thursdays.. featuring my 2nd guest Danielle

This "Talk to me Thursday" hits home with me...Danielle and I have "known" each other for 4 year + years now... do we know each other in person?!?!? NO...but does she probably know more about my inside struggles and fights with being a mom of a son who you know needs help, the struggle it takes on who you are as a mother/wife, the way people look at you in public, the strain it can put on your other children and marriage.. she knows how it feels to feel so helpless that you cannot fix it. YES... we met on a mom's board when our sons were both newborns... we followed each others his & lows, milestones, birthdays... then.. around the same time we both noticed struggles.. kind of silent in our noticing.. bc while watching and learning about other children there was just something.. NOT RIGHT. Danielle's son was diagnosed autistic before, Dylan. Therefore, I looked toward her as my mentor, my guide, my light at the end of the tunnel. She always was the TRUE advocate for her son.. and I knew that is what I had to do also to get them the proper care they needed so they could fight this horrible thing called "AUTISTIM" and since she showed me how to persevere and never give up.. both of our sons are doing AMAZING!!!

Here's is Danielle's story... its a fabulous one.. and a GREAT way to round up APRIL AUTISM AWARENESS MONTH

"My son Xander is a wonderful, silly, beautiful, loving four year old. He also
happens to have autism. Xander was born in October. By Christmas that year it was apparent he was different at quirky if you will. We went home for Christmas and my whole family commented on how "serious" he was; he would sit in his car seat and people watch, he wouldn't look into your face and coo or smile. He was very "intense"for an infant. He also had to be held close at all times, including when he slept, which got a little tiring, but as a new mom I learned to cope and love the snuggles. My family, my mom in particular, thought I was being ridiculous and "spoiling" him, so I learned very quickly not to talk to anyone about our issues.
Xander developed normally, and met all of his milestones, until he was a year old. He continued to be quirky and intense, with an amazing attention span. One time when he was not yet a year he crawled his funky one-legged crawl into his room and started to play with Legos. When I tried to go into his room to play with him or make sure he was okay, he pushed me out and closed the door. He sat in there for 45 minutes, absorbed in his play. I knew this wasn't "normal" but chalked it up to his personality.

The first time I mentioned to anyone that I had concerns was at Xander's one year well child checkup. I talked to his pediatrician about the fact that he didn't have any words, including mama. He babbled but didn't use any useful communication. His pediatrician had us get his hearing checked, and due to ear infections he had some hearing loss from the fluid in his ear, and his doctor figured that was the problem, and all we had to do was wait it out. After a few months of no improvement I was still concerned so I took matters into my own hands and called Early Intervention, who set up an evaluation for me. He was 15 months old when we started speech therapy as he was not communicating in any way, could not follow directions, and seemed to have almost no receptive communication.

When he was 20 months old we had a new addition to the family, his little brother
Gabriel. Xander loved his brother from the beginning, hugging and kissing him
constantly. A month before his second birthday he said his first word,
"ball". I was so excited (and sleep deprived) that I cried (full disclosure; I had a four month old, almost everything made me cry). He continued to make progress with his speech therapy, learning to use words to get what he needed, but he never used them to communicate. He would just say a word, or use a sign, he would never look for a communication partner to help him, he would just stand in a room alone signing "help" over and over until hear his little fist slapping his other hand and came to help him. He didn't play with me or with other kids, he didn't show me stuff he liked. As I saw Gabriel begin to develop I could see what Xander didn't do, and I felt more and more sad for him.When Xander was 30 months old his speech therapist suggested we see a neurologist and have him evaluated for autism. This was the first time anyone said that word to me, though of course afterwards many people said "I kind of thought he might have it, but didn't want to say anything." I cried off and on for days, then sat and waited for 5 months to get the neurology appointment. By the time we saw the doctor I had done enough
research that I wasn't surprised when I was told he had autism. The good news was that he now qualified for extra services through the school district, just by having that word attached to his name.

At this point Xander didn't use his words to communicate, but they were his self stimulatory actions, he repeated everything anyone said (echolalia) and he scripted, meaning he would sit and quote a Thomas the Train movie for hours. Like many three year old boys he was obsessed with Thomas, but it was a little more intense. He had to always be carrying 3-5 trains. He had to always be wearing a shirt with Thomas on it. I had to find some way of relating his pants to Thomas ie., they were blue like him. He also had sensory processing issues and to this day overreacts to stimuli, which leads to a lot of anxiety for him.When he turned three Xander started preschool through our district in the afternoons, and in the mornings he went to a special smaller class that had four kids on the spectrum and two teachers. They worked intensively on issues that pertained to them all. By Christmas he was putting two words together on his own and using them to communicate. By the end of the school year he was stringing together sentences. They did some amazing things with him.

This past year we moved him from his autism class into a social skills class the district offers to higher functioning kids. When the school year started we saw almost immediate regression, because he was still in the other class and he was regressing back down to their level, once we put him into the class with the higher functioning kids he rebounded almost immediately. He still gets speech therapy through the school but we stopped private speech therapy in lieu of a private social skills class. I also watch what he eats very carefully, as he regresses when he gets artificial dyes and preservatives, and high fructose corn syrup. It's a delicate balancing act, keeping him at the high functioning level he's attained, but it's worth it. He has a lot of behavioral issues and it just breaks my heart to see him acting out like he does, because I know it's because he's hurting and anxious and scared. His little brother Gabriel is one of the best things to happen to him, he is so understanding and helpful to him, he adores and looks up to him and would do anything for him. I feel like it puts a lot of pressure on Gabriel, and that he's always going to have to watch after and look out for his big brother, but he is so patient and loving with him.

Having children is hard on any marriage, especially when one has special needs, but it can also bring you closer together. Learning new ways to parent and exploring your child's needs together causes some strife, but in the end if you can make it through all the challenging behavior and find something that works for your kid, it's almost like a crisis, it brings you closer together. Parenting a child with autism is not like parenting a child without, I call it "creative parenting". Every day I have to come up with a new way to deal with meltdowns, to get Xander to want to do what I want him to (because if he doesn't want to do it, it won't be done!), everything from peeing on the potty (we're still working on potty training) to eating dinner (I have to feed him), to not hurting himself or one of us in one of his outbursts (often achieved by physically restraining him in my arms until hes calm enough to let go). But being a parent is tough for everyone, and each child has their own struggles. One of the worst parts is the judgment other people pass on us, and I have to admit it often keeps us at home instead of going out. I'm always a little scared to go out alone with both boys, afraid of a meltdown, afraid that this might be the time Gabriel gets upset and I can't control both of them at once, and always a little afraid of those stares from strangers as I sit crying with my beautiful baby boy in my lap, restraining him as he thrashes around screaming, waiting for this outburst to pass.


Anonymous,  April 30, 2009 at 1:20 PM  

That was beautiful. I know it has been such a struggle for you but you are one of the strongest, most wonderful moms I know. I cannot imagine some of the pain you have been through helping Xander. You are to be looked up to. I am sorry that you get looks when going out. Hugs.

I love you sweetie.


Anonymous,  April 30, 2009 at 2:00 PM  

Hugs Danielle,
You are a very special person which is why God gave you an extra special child, he knew you could handle it and you have done great with him.

Jamie,  April 30, 2009 at 3:27 PM  


I loved this very much, and could feel in your words, how much you love Xander, and how hard the struggle has been. I've always admired your strength, and thank you for sharing your story more indepth.


Catherine May 1, 2009 at 1:33 PM  

danielle: wonderful story about the trials and tribulations you and xander have gone through these past 4+ years.

sam: thanks for letting Danielle tell Xander's story. Both of you are wonderful mothers. Dylan and Xander are lucky to have you both in their lives.

love ya both