Saturday, February 20, 2016

To the parents struggling to get a diagnosis.

Being a parent in itself is an amazing and terrifying thing. We want what's best for our children, for them to happy and most of all healthy. So what happens when when you just know something is wrong. You can feel it down in your bones but no one will listen? 

Somewhere around 18 months I could tell something was not right with my son. He wasn't responding to his name, he wouldn't make eye contact, and he would hardly eat anything. As time went on he wasn't talking, he was inconsolable, he became obsessive about certain toys and would line them up all over my house. I finally decided to make an appointment with his doctor to talk to him about my concerns. I was pretty much brushed off as a paranoid first time mother. Right there on paper he had failed written for EVERY milestone yet he insisted Dominic would catch up.

I decided to get a second opinion and took him to a new pediatrician. He told me my son was too young for any testing and told me I would have to wait. This was not an acceptable answer for me so I kept looking for new doctors. Finally my mom found a doctor about 50 miles away that was willing to listen to me so we took him to see her. After listening to everything I had to say and interacting with Dominic she too knew something was not right. She had his medical records sent over from the previous doctor and she cried when she saw he was failing everything and no one was doing anything about it. She finally gave me the referral I needed to have him tested for autism. It was a long process with a lot of paperwork and evaluations  but in the end we finally got our diagnosis a few months later. 

From the moment he was diagnosed I rushed to get him in early intervention. He had in home therapy and then started preschool for special needs children around the age of 3. Had I taken the first doctors word for it who knows how different his life would be. He would have missed out on precious time in early intervention and may not have come as far as he has today.

For any parent who has that feeling, the one you feel down to your core that is telling something isn't right listen to it. Don't let anyone make you feel over protective or paranoid. You know your child better than anyone in the world.  Trust your instincts for they are rarely ever wrong.

Monday, February 15, 2016

To his sweet little brother

Dear Ukiah,

You are barely two years old and you have already made such an impact on his life. 

You are filled with so much love and compassion. Everyday I watch you two together and I am so thankful for you. You are his best friend and his keeper.

You have taught him so much in the little time you have been in this world. He shares toys he normally wouldn't let anyone else touch, he takes the time to try and read your books to you, and even tolerates your slobbery kisses when normally the germs would send him running for the hills. 

He's always on your mind, whether it's a visit to the doctor, hospital, or grocery store. Any sticker or toy you get you always make sure to ask for one for your brother, even if he's not there. The happy dances you dance and the songs you sing when it's time to get him from school warm my heart.

Everyday you are learning from each other. You have taught him so much patience and understanding. He has taught you new words and how to play his games. His face lights up with pride each time he teaches you something new. I feel so lucky to have the two of you as my children. I look forward to watching your bond get even stronger as you guys get older. I spend a lot of time worrying for your brothers future but knowing he'll have you by his side gives me so much hope.


Wednesday, February 3, 2016

Autism and our education system.

If you've ever been to an IEP meeting there's a good chance you've seen how flawed our education system can be when it comes to our kids with autism. It could be a teacher who doesn't want to accommodate your child's extra needs. Or maybe your child doesn't quite meet the criteria needed to get the extra help even though they never quite hit the mark for their grade level.

My son will be 9 this month so we have had our fair share of IEP meetings over the years. We've had great teachers and we've had one who didn't seem to want to put any extra effort into him. Unfortunately her lack of effort showed greatly on his end of the year IEP, it was the first time he had ever failed all of his goals.

With the increasing number of children being diagnosed with autism I feel like our education system needs to be reevaluated. In a perfect world all teachers would have experience with autistic kids. They would go out of their way to give a little extra time and help to those who needed it. Whether they spend part of their time or all of their time in a general ed classroom. For children like my own, there would be space available in the type of classroom that would fit his needs. We are currently in the process of applying to get into an ERC classroom. Currently there are only about15 spots available in the entire school district. If he doesn't get accepted he will continue to spend part of his time in LRC and part time in a general ed classroom which is becoming harder and harder for him as he gets older. With such limited space it could take years for him to be accepted. In the mean time he will just fall farther and farther behind.

I know that none of these things can be changed overnight but I feel like as a community we desperately need to push for changes. We have to fight for our kids and make sure they are getting the best education they can. One they deserve.  For the parent who doesn't feel like their child is getting what they need, don't be afraid to speak up. Don't ever stop fighting for what you know they need. Don't ever let them make you think they know what's best for you child. We are their voice and their biggest advocates and we must never forget that.

Monday, February 1, 2016

To the woman staring at my son in the store

On the list of things he doesn't like to do I'd say going to the store is close to the top for Dominic. It's bright, loud, and typically a lot of people. If he's there too long he gets a headache. Short trips are sometimes tolerable but he still makes sure to let me know he's not pleased about going ahead of time. 

It's usually not long after we get inside the store that he starts stimming. He flaps his hands, hops around, or says the same things over and over. If we are not there too long this usually keeps him calm enough to make it through the trip without a meltdown. There are times that if it's extra busy or loud that he quickly becomes agitated and we have to leave but most of the time his stimming allows us to get everything we came for.

Last night I asked him to come with me. I told him he could pick out a movie and a treat if he came. He complained of course but he came along anyway. Not long after we got there he was hopping around repeating the same thing over and over. His brother was giggling and trying to go around with him. While waiting for a text back from my husband we stood off to the side of an aisle. Dominic was standing next to me making repetitive hand movements while talking to himself when I happened to notice a woman staring at him with looked to be disgust. As much as I wanted to I decided to say nothing. Dominic had no idea he was being judged and I certainly didn't want him to so I just sat there and stared at her until she realized I was looking at her. She shook her head and went on her way. 

It always hurts when our children are being judged. It hurts even more when you come to the realization that this will be a life long thing. Even before I had children of my own I did my best not to judge the mother of the screaming child in the grocery store. Or the sweet boy making odd movements while repeating himself over and over. I didn't know what these people were going through so who was I to make a judgment. I can only hope that one day everyone has that mentality. Until that day I will be staring back at each and every person who feels the need to judge my son and I can only hope he will never notice.