A family's story

Posts tagged ‘Support’

Honoring #MikaelaLynch

I have to post tonight, as I am going on a field trip with my autistic son and the 5 other kiddoes in his special needs class tomorrow. We are going to the zoo with the rest of our school’s first graders. A big, huge, open zoo. We have been to this zoo numerous times as a family. But he has never gone with school. And the thought of him there without me freaks me out. Big time.

Tate has not, to this point, been a wanderer or an eloper. He follows our rules about staying in the house and in the yard. He stays with adults and likes being part of a group. We make sure to keep doors and windows locked. We have established rules about leaving the house. To this point, he has not had an interest in getting outside without asking us. We are lucky. We are blessed. He’s verbal and often will ask to go outside. He has always asked us before leaving the house. Always. And, our lovely child, thanks be to God, often comes looking for us when he can’t see us.

When we are out in public places, though, we have had moments where he wanders just slightly ahead of us. He is autistic. When his attention is captivated by a desired object like a fan or running water (I know!!), he may not answer when we call his name. The allure of his beloved stimmies is more of a draw than the sound of his parents’ voices. Or his brothers’. Or a relative. Or a good family friend. Or a teacher. Like many autistics, he doesn’t have the same sense of fear or executive function to know that he is in danger. He knows that something makes him calm/happy/regulated, and he will seek it.

Most of the time when Tate wanders slightly ahead of us, he turns it into a chase game.  If I shout his name, he turns to me and smiles. If I run after him, he runs faster, or goes in the opposite direction. We have been fortunate that when these situations arise, we are either able to get to him in time to keep him safe, or we are beneficiaries of the kindness of a stranger.

I was shocked and saddened last week by the loss of Mikaela Lynch. That baby could have been my baby. Tate loves water. All by his lonesome, he would have seen the water and felt excited. The water would have been a draw…the noise would calm him if he was at all upset. And…and…I get all choked up when I think about what happened. That could have been Tate. So, as the Lynch family mourns, and tries to pick up the pieces, they came under attack. The harsh criticism of their parenting during their tragedy is awful. Just. Awful.

Instead of judging her parents, who are grieving right now, show them support. Let them know that we can’t even imagine what pain they are enduring. That we know just how close to the brink we all are every day to having a similar story. The Lynch family and their community are in my prayers. I pray that they find some solace and comfort during their time of profound grief and loss.

Please, if you have autistic children, or know someone who does, look into resources that can help you keep them safe. I know we are re-evaluating our safety plans for our son. And we will be talking with neighbors, as well. Especially the ones who own pools that are not protected by fences or gates, now that summer seems to have arrived.

 

 

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Trailblazer

When Tate started Early Intervention in the spring of 2008, we were the only family I knew who had to use the services. The only one. I had to learn how to navigate the system. I had to learn how to talk to insurance. I had to learn which therapies were important and which were not. I had to concede that my child was different and needed “intervention”. Many of you out there know, it is not easy to admit that your child has special needs, and it can be very, very lonely.

In the early stages of Tate’s intervention, I read…and read…and read. Books on development. Books on Sensory Processing Disorder. Books on Sensory Integration. Books on speech delay. Books on autism…I was on the Internet all.the.time. Always searching. Initially, I searched to find the definitive example that would show that Tate was not autistic. I was scared and only knew of negative connotations with the disorder. After a while, I stopped denying the possibility of autism, and started to read about therapies, interventions, and programs for children with autism and other intellectual disabilities.

I hadn’t yet found a group of people who knew what I was going through. Who knew what it was like to be told that their child was “delayed”. Who knew that their child would need a lot of support to just be able to do the things that typical children do. I had no one who had been told that their child was not typically-developing. (As a member of a message board of moms with kids born in April/May 2006, I did encounter a few moms with kids with SPD…and they were able to give some insight and advice…but they were miles away…and I couldn’t get referrals or someone to give me a hug and look me in the eye and tell me it was going to all be ok.)

In Tate’s first year of preschool, we met a few other families with children in his class. I was hoping for connection. For a group of people who would “get” it, and scream, “me, too”! I wanted to hang out and spend time with them and see how their kids were doing and what therapies they were using. As we got to talk to other parents, and I grasped for connection, there was not much. For whatever reasons, we were the only family who had a child as delayed as Tate was. We were the only family getting outside therapy services. The. only. one.  And no one else had older children who had been through the program. So much for comparing notes. 

We forged ahead. At Tate’s 4th birthday party I experienced the role of “trailblazer” for the first time. One of the mothers had a daughter in Tate’s class. Her daughter was younger, and still non-verbal. She had just found that their insurance would cover some speech therapy. She asked if anyone knew of an outside speech therapist…and if so, did they like the SLP. I perked up. We had a SLP that we loved…that Tate loved. She was great. I gave Em the number. I said it was amazing how Tate responded to the SLP. They were able to get her daughter an appointment a month later. They still see the same SLP today.

My next experience with taking the lead came in 2011. Em called me, out of the blue. It had been several months since we had spoken. Her daughter was in a different preschool class than Tate that year. But she wasn’t calling me about her daughter. She was calling me with questions about her son. Her son is 2 years younger than Tate. She said she remembered some of the behaviors and delays that I had talked about with Tate, and she said it reminded her a lot of her son, who was just about 3, and in Early Intervention. They were in the process of the district evaluation for the Early Childhood program. When she started talking, it all was very reminiscent of our experience with Tate. The main difference is that her son was a wanderer, and thankfully, Tate never wandered. I told her that we had just had an evaluation for autism, and that he got a diagnosis. She cried a little, but said she thought that might be it. I encouraged her to make a neuropsych appointment.

This past fall, a friend contacted me. She thought she remembered that Jake had some issues with math. Apparently her daughter was struggling and the teacher suggested it may be dyscalculia. Essentially, that is Jake’s issue. I encouraged my friend to get an evaluation done. I also gave her some of the tips we were given for Jake in regards to math. She talked to her district, and she got an evaluation done. Her daughter is in the process of getting an IEP. I shared websites we used with Jake, as well as some other resources. I also gave examples of Jake’s math IEP goals, and accommodations so she knew what they might look like.

Just the other day another mom approached me. She  has a son Jake’s age, and said he can be so focused and into something when he likes it, but his teacher told her that he cannot maintain focus. She said they are getting an evaluation–and it turns out they are going to the same neuropsych that evaluated both of my older boys. She asked if she could pick my brain and ask a few questions. I assured her that I would be willing to answer any questions. I already have some bullet points and resources for her…some things that might assuage her anxiety about the whole evaluation and possible diagnosis. I know her son..and in some ways, he reminds me of my boys and their fidgety behaviors when they are anxious, in sensory overload, and the like.

So, I don’t know if I’m necessarily a “trailblazer”, however, I seem to be the one person whose been through “this” before for parents who are in my current circle.  I remember feeling alone, scared, and uncertain. I remember trying to find a shred of hope in the dark. I remember. And because I remember, I will do what I can to help other parents not have to face this alone. I will give referrals, hugs, and the”it is going to be ok”. Because it is. Different, yes…but ok. And sometimes, even, great.

Target- my social headquarters

English: This is a row of Cash Registers at a ...

English: This is a row of Cash Registers at a Target store in the US (Photo credit: Wikipedia)

Any more these days, Target is a hot-spot of social activity for me. I “run into” people all of the time. Yesterday, I had 3 “run-in”‘s with people whom I know. Ironically, when I say that I “ran into so-and-so today”, two of my three children think that I literally ran into someone. I am sure Jake and Tate envision their pint-sized momma charging head-first into the adult whom I’ve just named. Jake gets the giggles. Tate tries to figure out how an adult gets to “run into” someone without getting into trouble. And I find myself trying to explain what happened in non-jargon language.

Anywho, I “ran into” three people while Cole and I were running one of my many errands at Target. The first person that we saw was another parent from school. She’s got a daughter Jake’s age. She was trying to appease her 2 1/2 year old son with a Fisher-Price guitar while she did some last minute shopping before their trip out of town. We chatted about Thanksgiving plans and the “joys” of dragging a toddler/preschooler to the store. I had appeased Cole with a Transformer Bot Shot. He’s on a mission to collect as many as we allow. Right now he has 4. I am a sucker..and he knows it. Hubz made me promise to abstain for the next few weeks. I will try with all I’ve got. But man, when Cole turns on the charm, it is hard to say no to him….

After that chat, I made my way to the groceries. Among the frozen veggies and potatoes, I ran into Tate’s bus driver from 4-year-old preschool. It had been a while, but she remembered that Tate was my son..and she remembered Cole’s name. Color me impressed!! She asked how Tate was doing, and I gave the high-level overview. It was nice catching up with her. I showed her a picture of Tate and she couldn’t get over how much he slimmed down and had grown. She said, “He’s like a different kid.” She has absolutely no idea how true that is…since she shuffled Tate to and from school, he has matured and grown and learned and made tremendous progress. She really wouldn’t recognize him. I mentioned how he had “graduated” from his harness. She laughed and said knowing Tate from 2 years ago (not even, considering he last rode her bus in June 2011) she never would have guessed that he would be able to sit still enough. She said that was terrific, and wished us a Happy Thanksgiving. I wished her the same.

Cole and I had to get just a few other things, and then we were on our way to the check-out. As I made my way to the check-out lanes, it seemed like everyone who had been in the store was doing the same thing. Why does that always happen?! Luckily, Target is on top of it and opened up a few more lanes as we walked up. I chose a lane where the couple ahead of me was just about done paying for their merchandise. I was busy unloading and the woman popped her head up and said, “Hi, Lisa!”. It was Geo’s mom. Remember Geo? Tate’s friend? I asked how things were going. She said she was glad she “ran into” me.

The evaluation that they had done  revealed that Geo has PDD-NOS, and that he has ADHD. She and her husband (who waved sheepishly at me) knew it was coming, but they still had to come to terms with the actual diagnosis. She said once they did that, she struggled to get the school to address the evaluation. Geo only has a speech IEP at the present time. Getting the speech pathologist to get the ball rolling was a pain. Luckily Geo’s mom got things going, and they met to do a domain. Right now his eval is being reviewed by the team. She has been notified that their meeting will be in early December, and that Geo will most likely be moved to a different school. Our school, as we only have one class in the district for “instructional level” first grade.

I told her that she can feel free to ask me any questions as they come up. I also made sure to let her know how great the team is at our school–and how much Tate is loving, LOVING first grade there. I shared how much progress he has made in just the first trimester. I also told her that Geo would know a few of the other kids, as they had been in Early Childhood preschool with Tate and Geo. I offered my support with any autism questions, too. I know what it’s like to get that diagnosis for your child, even if it is a confirmation of what you already know is true. I want her to know that she’s not alone.

So we finished our conversation, promising to be in touch. We discussed having another play date soon. I think that would be a terrific idea. Tate still talks about Geo. I am not sure how much we’ll squeeze in over the next couple of weeks, but we are both around during winter break, so we’ll get a play date or two in during those two weeks, for sure. So, apparently Target is as much a hot-bed for social activity for Tate as it is for me!

 

Just Breathe

When I became a mom, my mother had one piece of advice. “Don’t lose sight of yourself. Do things for you, so you remember who you are.” Being a first timer who thought she had it all figured out, I shoved that piece of “wisdom” to be filed in the back of my mental file cabinet. I knew who I was…having a child wasn’t going to take that away from me.

Life has changed me in ways I never would have expected almost 8 and a half years ago. We have 3 kids. I have a special needs child. I have a child with attention and learning disabilities. I have a very typical (and high-maintenance) 2 year-old. I am a stay-at-home-mom.

A year and a half ago I watched helplessly as my mother succombed to pancreatic cancer. During her last few months I helped my sister care for our mom, and helped make the decisions after she passed away. Last year, I helped make sure our dad was doing ok and we cleared out Mom’s things, since Dad couldn’t.

I have made sure that Tate gets all of the therapies we can afford. I shuttle him between school, home, and therapy centers. I make sure Jake and Cole have “typical” experiences like mom & tot sports, tae kwon do, swimming, cub scouts, team sports.

I serve as a room mom for Jake’s class, so he knows that I am there and interested in what he does. I teach religious ed at our church. I offer to help out with parties and field trips.

Hubz and I attend all of the boys’ IEP meetings. We make sure the boys get their yearly check-ups and bi-annual dental visits. We take them to specialists and follow-ups. We make sure they are happy, healthy, and loved.

Somewhere in-between carpool for school, trips to therapy, and planning the next religious ed lesson, I realized that I lost sight of the one person, the one thing my own mother had been so adamant about me not forgetting…me.

Luckily, by the grace of God I did perk my ears up when several of the writers of blogs I read regularly started to proclaim 2012 as the “year of the oxygen mask”. This movement, found on Twitter, Facebook, and peppered throughout the blogosphere, focuses on the concept that we parents need to take care of ourselves first. If we aren’t taking care of ourselves, how can we possibly be there for our dependents. It is so simple. And yet, so many of us forget to put our needs and health first.

With the support of my wonderful partner in crime,Hubz,  I, too, hope to make this year my year of the oxygen mask! I am following the movement on both Facebook and Twitter. I have resolved to do more for me, and to not feel too guilty about it. I need to come first sometimes.

I started small. I joined Weight Watchers. This is the year I will lose the last 15 pounds. I started using our YMCA facilities. (The Y is not just for kids, you know!) I will reduce the tummy flab that’s been hanging around for, ahem, 2 plus years. Annnnddd, I went for coffee with my sister today- sans kids. We talked for 2 hours. I came back feeling refreshed, feeling good.

I am willing to admit that I am not super-human. I need breaks. I need help. I need a village…and thankfully I am finding what I need from a few different places…because if I can’t stop and just breathe sometimes, I will be of no help to those 3 special little guys who need so much from me.

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