AUTISM PARENT

I know these are all the things I’m SUPPOSED to be. I try, I really try and I do the best I can. Lately, I feel like parenting is just taking everything out of me. I feel tired. That has to be ok. In my opinion, it’s just not realistic to expect myself to feel positive and full of energy about parenting ALL the time. Intellectually, I know it’s ok to even NOT love it all the time. I feel guilty because it’s so much harder to be a step-parent than I thought it would be. I love Declan so much, I fell in love with him when I first met him when he was Three Years Old ~ but there is a cellular connection that I really miss with him that I feel with my biological sons. Maybe it’s as simple as him not calling me *Mom*. Why WOULD he? I’m not. His Mom is not living anymore.

I know how to be a Mom. I know how to be a GOOD Mom. I just feel like I have no idea how to be A Mom to Declan. I get  bummed out because I seem to be making the same mistakes over and over. Mainly, I’m afraid that I expect too much of him. He’s eleven years old now and ALL eleven year olds want to spend all their time doing only the things they like and choose to do, but it’s important for them to have responsibilities. He’s had to make his bed, put his dirty clothes by the washing machine and put away his laundry for a while but it’s a bit more challenging because he has a logical reason for things and, for example, it takes a long time to explain to him that LOGICALLY he has chores/responsibilities and expected behavior, because he is a member of the family, he has to do his part to make it work. He is also learning Life Skills.

The behavior we’re dealing with from Declan is Typical Pre-Teenage behavior, we’re trying to think of new ways to get through the rudeness, backtalk and attitude that we sometimes get from him. He has Autism, so we have to approach this challenge from a different perspective and, as always, we try to come from a place that he can understand. Sounds easy, but it’s sometimes truly exhausting. He likes to talk his way through things and ask lots of Who? What? Where? Why? questions. Lately, as a way to eliminate just some of the *lawyering* he does, we have been using a Star Chart for him to earn his electronics time ~ he has a list on his wall of goals, what he needs to do to achieve that goal and the reward (one sticker which equals ten minutes of electronics).

One step at a time. One moment at a time.

 

Our transition from school year to summer vacation has been going on for a couple of weeks already and school hasn’t even ended yet. It’s the last week of school…finally!! Declan will be going to two different day camps, each a week long, plus his Martial Arts will continue and we have joined a nearby pool club! We will be able to go to the pool and to the ocean! Declan is also going to take some swimming lessons because, although it took several years for him to be comfortable getting water on his face, he now LOVES the water and needs to be a much more confident swimmer.

Even though we have fun activities planned for Declan and adventures for our family, it’s going to take some time to adjust to a summer routine. We’ll get through this transition just like we have gotten through every other one…slowly, with some ups and downs and a lot of BREATHING!

We finally had our appointment with the Pediatric Psychiatrist. He was gentle, kind and really listened. He thinks that, in addition to therapy, medication would help Declan’s Anxiety, Depression and OCD. He may be put on Prozac. Charlie and I are going to do our research before we go back in a month ~ Curious and want to find out more about why the psychiatrist is thinking Prozac as a first option. Need to talk to Declan’s therapist about it too ~

Everybody is different, so what works for one person may not work for another and vice versa. Sometimes it takes a while to find the right med and the right dose. Forget sometimes ~ more like MOST of the time. It’s funny (NOT HA HA) how it’s so easy to say that and believe that when it’s someone else, but when it’s your own child, it’s not that easy and not that simple.

Starting meds. is a HUGE deal. We’re taking it REALLY slow.

I talked to Declan’s teacher yesterday ~ explained that he is overwhelmed and really struggling ~ At his last IEP meeting we and his team all agreed to add the accommodation that he do no more than ONE HOUR of homework ~ These days he is generally so anxious, overwhelmed and struggling that we clearly need to change that ~ It’s too much ~ He’s doing well academically so we would like to take ALL homework off the table ~ during my conversation with his teacher, I realized that it’s important for Declan to do SOME homework, if only for the sense of responsibility ~ so we agreed on TEN MINUTES ~
Well, last night was one big, long Meltdown ~ Frankly, my concern right now is NOT Declan’s homework and academics ~ My concern IS helping him through his depression, anxiety and OCD so he can hopefully feel more in control of himself
It’s clear to everyone involved that although it’s temporary and we’ll all get through this tough time, it’s bigger than talking, therapy, calming exercises and breathing exercises ~ we are all having to get used to the idea that Declan may be helped by medication in addition to therapy ~ His first appointment with the Pediatric Psychiatrist is tomorrow
🙂

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Last night Declan went to his first dance EVER at the nearby Autism Center. It was for kiddos of all ages and all abilities. There were volunteers to help from the local university as well. It was such a wonderful and fun event ~ music, friends, food, dancing in a big room and a smaller CHILL ROOM that was quiet, where there were games, snacks and friends hanging out. Charlie and I left Declan and went to get something to eat and after about an hour I went in to find him and check in ~ he was happily playing checkers with another boy, other kiddos were bopping around having fun. Two things really struck me when I walked in to check on Declan first that I have never seen him so relaxed and happy and second was how many people were at the dance! Everyone was relaxed, joking around, being themselves and having fun ~ It was such a joy to see Declan having fun! I went and sat with him for a few minutes ~ I asked if he ate anything *I ate two pieces of pizza, two cookies and a chocolate covered strawberry*! Usually he is concerned about being embarrassed by parents but last night when he saw me, he was concerned that I was going to say it was time to leave ~ He stayed until the very end! He made some friends! He danced! He played games! I’m tearing up again as I’m writing this because I’m so happy and excited for Declan that he has this forum to ONCE A MONTH participate in some kind of group activity with other kiddos on The Spectrum! I cannot say enough positive things ~ I feel so grateful to have found The Autism Center!

The thing that I’m having a hard time letting go is, at the end, when I went back in to get Declan, one of the volunteers came over to me and said how awesome he is ~ then she said *He must be high functioning ~ he doesn’t look or like he seem like he’s on The Spectrum* ~ I’ve had people say that to me before, and it doesn’t really bother me ~ I  chalk it up to ignorance and try to create a Teaching Moment ~ But last night I was totally caught off guard ~ I really didn’t expect it at the DANCE FOR TEENS ON THE SPECTRUM

I know it wasn’t malicious, I was simply taken aback.

Declan was diagnosed with Asperger’s when he was two and a half years old and has had an IEP ever since. He is now eleven years old and in Fifth Grade and there are more accommodations in his IEP. One essential accommodation is that he use his laptop from home instead of writing longhand ~ he has really good handwriting ~ he is a perfectionist and erases frequently, so handwriting is a torturously long process for him ~ typing on his laptop helps make writing assignments take MUCH less time, which makes them less stress and anxiety producing. We added the laptop usage to his IEP toward the end of his Fourth Grade year and it right away made such a positive difference! He uses the laptop for written homework assignments and should have been doing the same in school this year just like he was starting to do at the end of last year. ESPECIALLY since everyone saw such a positive change…

SO…Declan informed us a couple of days ago that he hasn’t been using his laptop in school AT ALL ~ He worries about being embarrassed and being teased, which Charlie and I talk about with him and try to reassure him ~ we have talked with him about his laptop being a tool to help him write like glasses help people see etc…

Correct me if I’m wrong or out of line here, but it’s THE MIDDLE OF OCTOBER and our CHILD told us he hasn’t been using his tool, NOT his teacher ~ His teacher KNOWS about Declan’s needs because I met with him TWO times, emailed him, checked in with him several times at pick-up time and he NEVER ONCE mentioned that Declan isn’t using his laptop ~ WHY isn’t the teacher helping/encouraging him with a CRUCIAL PART OF HIS IEP and WHY did he not say anything?
I’ve sent yet another email and will meet with him again

IT IS THE TEACHER’S JOB TO COMMUNICATE WITH THE PARENTS NOT  THE CHILD’S JOB

AARGHH…IT IS SO FRUSTRATING HAVING TO BABYSIT THE SCHOOL

On a POSITIVE NOTE ~ I have High Hopes and a Good Feeling about his New School!

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Happy Eleven!
🙂 ♥

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