A family's story

Posts tagged ‘stress’

One Down, One to Go

Since my last post, Tate’s IEP meeting has been rescheduled twice. It is now next Wednesday. Jake’s IEP meeting was yesterday. 

We were under a time constraint, as most of the team had another meeting at 9:45. About 5 minutes into the IEP, the principal joined the fray. She has never been at an IEP meeting, so Hubz and I got a little uneasy….but she mostly sat and nodded and added a few comments here and there. It became clear to us that she just doesn’t understand special ed…or ADHD. At all. *sigh*

Overall, the meeting went well. We have a good plan in place for Jake. He is blessed with another fantastic teacher, who really understands the need for accommodations, modifications, and specialists and such. She is so helpful and had a plethora of ideas to help Jake succeed in school. His resource teacher is good, and is incredibly willing to work with the general education teacher to make sure that Jake isn’t missing out on a “typical” 4th grade experience. I absolutely love that the resource teacher is pushing into his classroom to help him (and a couple other students) more. I think that is huge for Jake.

The toughest part of the meeting, as always, is listening to the areas of weakness. That never, ever is easy. I will never, ever be comfortable with it. Hubz and I agreed with the statements made about Jake’s current areas of need, but it’s just not easy to hear about your child struggling. Especially when the number one struggle is anxiety. 

Anxiety. The anxiety beast runs rampant around here..and right now, it’s got it’s clutches on Jake. He is so debilitated by his anxiety. It is heartbreaking. We scheduled an appointment with his psychiatrist on Friday. I am trying to get a psychologist appointment, too. We brainstormed some ideas during our meeting to help him combat the beast while he’s at school. We have a few checklists that he can use in his folder, and we decided that he should get a daily “bounce break” in the social worker’s office. He can use her ball, her trampoline, or just sit and decompress…after math. Because math and numbers are another of his nemeses. (??) 

Overall, though, my fears about placement in a self-contained classroom were assuaged. They want him in the general education setting. We all believe that if we can get through the anxiety component, we can really watch him flourish. So, we are all in agreement that his placement in general ed/resource is right for him. 

School shouldn’t be this stressful for kids. It just shouldn’t. 

Reflections on starting school

So, we are in our last week of summer break. All of the school supplies are purchased and awaiting labels. A few new clothing items have been purchased. We started our evening school routine last night. Haircuts and sneaker shopping are on my “to-do” list. Tomorrow we visit the school and view class lists, see the principal, and chat with friends. (Cue the sound of a record player being stopped mid-song.)

Chat with friends. There’s something, now, isn’t there? I will chat with my mom friends. Hubz will be chatting with parents of current scouts and hopefully a few future scouts. Cole will chat with just about anyone, as he seems to think (and often is right) that everyone is his friend. But then there’s Jake and Tate. Tomorrow will be so difficult for them. Chatting and small talk do not come easy to my older two children. At all.

Tate still refers to everyone who he goes to school with as a “friend”. He has a couple real friends, but talking to them in the chaotic situation that is “Meet the Principal Day” is not going to happen. He doesn’t cry or try to climb up my back like he did when he was 3 or 4, but he does all he can to make it through the school “stations” without a meltdown. Talking to peers, which is difficult enough, is near impossible for him in this setting. I don’t expect him to be able to converse with friends tomorrow…that may be too much.  While we are at the school, his teacher and I want to attempt to have him tour his classroom, if he can tolerate it. Otherwise, I’ll take him back on Wednesday morning to scope out his rearranged classroom.

Jake has a few friends. However, in the busy-ness that is “Meet the Principal Day”, the chaos will consume him. He will struggle to focus and have a conversation. His back-to-school anxiety will cause him to perseverate on topics that many of his friends won’t care much about. He’ll shut down if he gets too dysregulated. It will be a challenge to keep him focused and get through the stops we need to do.

Also, as we do our final countdown to the school year, the anxiety beast here is ferocious. It is gnawing at all of us. It is wreaking havoc with sleep and routine. My children are not themselves. I am not myself. We are trying to do whatever works to get through the days. And the nights. Patience is thin. We have a lot of bickering. A lot of short tempers. A lot of frustration.

In all of the frustration, however, I am grateful for one improvement. This year, Jake has been able to advocate and verbalize the fact that he is nervous about school. Because he’s anxious about school and a new teacher and new demands (he has heard that 4th grade is harder), he has very little tolerance for anything that goes against his desired plans. He is quick to shout at his brothers. He screamed at his friend the other day. He yelled at me to stop talking about our back-to-school schedule. However, in so doing that, we opened a conversation about what is going on in his brain, and he was able to put it into words. Knowing how he’s feeling, instead of guessing, has really helped me try to work through this rough patch. It isn’t easy, and I am tired and losing patience, but I respect his need for trying to figure it out on his own and needing some space to do so.

School is near, and we will make it. It’s just these few days prior to the actual event and the thinking about it that are worse than the actual act of going back. Maybe tomorrow we need to do some yoga before and after the “Meet the Principal Day” in order to get in a good place. *Cue deep breaths.*

Rambling Thoughts…

Sometimes, I forget that I’m a parent of a special needs child. In the recesses of my mind, where I think about my life and where I am at, where I was, and where I hope to be, I don’t always factor in that two of  my sons have some challenges. They are simply “my boys”. As a parent, a mother, I love them. NO descriptors need to be used with that, right? So, when I listen to my inner monologue, I rarely use the “autistic” and “ADHD” and “special needs” descriptors because plain and simple, Tate and Jake are my sons. I love them. Period.

Of course, the reality of it all is that I do have children with some special needs. The society within which we live is not designed for individuals with different neurologies. It really seems to be designed for those of us who function within the realm of neurotypicality…whatever that means. Because my children do have needs above and beyond what other children in their age groups require, I have stress. A lot of stress. Like many people, I internalize my stress. I stuff it down. Sometimes, I trick myself into believing that I have it under control. Until I don’t.

On Sunday I mentioned to Hubz that my throat felt scratchy. I figured I was getting a cold. As I have done my workouts the past 5 days (in my 10th week of the 30 day shred. Shut up. At least I’m still moving.), I have found that they are harder, not easier. I was feeling exhausted all of the time. My head hurt. My joints were achy. Tuesday night I thought I had a mosquito bite on my back. I scratched it, and let it go, as I had to calm a certain 7-year-old’s anxieties about the start of Extended School Year. Yesterday I noticed how ITCHY my back felt as I was in the shower. As I toweled off, I angled my body to see what was going on with that mosquito bite. Holy moly!! It wasn’t a bite…it was a swatch, about 3 inches wide, on my left side. CRRRAAAPPP! The pieces started to fall together.

It all was eerily similar to the June of 2006. Tate was 2 months old and incredibly fussy–and never sleeping. Jake was demanding of all of my extra attention because he had this pesky new baby brother who always needed me. Hubz was working–a lot. I had a really bad itch on the right lower side of my back. And it was raised..and a little blister formed. Shingles.

Yes, with all of my stress, the stress that I have internalized, the shingles have returned. I luckily don’t have pain…just itching and joint discomfort. And I am so tired that I feel like I could be Rip Van Winkle and sleep for years…and maybe STILL need more sleep. I’m moving at a snail’s pace, but I’m still moving..and still able to function–mostly.

Guess I wasn’t handling that stress as well as I thought. It got the best of me. So, yeah, parents have a lot of stress. Parents of children with special needs have even more stress. We deal with more than most do on a daily basis. It is hard. It is okay to admit that it’s hard. That is not demonizing our kids or whatever needs they have. It’s a fact. We have to plan, prepare, make contingency plans, call ahead, fight with insurance, fight with insurance some more, have difficult conversations–almost every single day. We can’t rest too much, because there is always something else coming up that requires careful consideration and planning.

That being said, if you’re feeling overwhelmed. Overburdened. Overdone. Get some help. Call someone. Anyone. Help is out there. Please take advantage of it. (I, for one, am taking advantage of my in-laws offer to watch the boys overnight on Saturday. Hubz and I need the quiet. The time just for us.)

Editor’s Note: My shingles saga is a weak segue into the tragic story about Alex Spourdalakis. It has weighed heavy on my mind (and heart). All I can think of is this dependent child who lost his life when his caregivers thought there was no other way out. There is always some other way. Murder is not the answer. EVER. 

This horrific act happened in my state. It is way too close for comfort. That poor boy. While he was adult-sized, he was a boy. Innocent. Upon hearing the story when it happened over the weekend, I couldn’t get over how the police chief said they were acquainted with the boy and his family because he often had to be restrained when going to the doctor’s office. If the family was acquainted with the police department, why didn’t the mother and caregiver call the police when they were at a loss…the police could have gotten Alex out of there…to safety. DCFS had offered help. It was refused. (Even if it wasn’t enough, at least it was something…why refuse it? Why play martyr?) So many why’s and what-ifs….

So, please, if you ever feel like you’re at the end of your rope…truly at the end..and have no hope, there is always hope. Always. Here are some links for references…for lifelines…

Childhelp® –  800.4.A.CHILD (800.422.4453)

National Parent Helpline® – 855.4APARENT (855.427.2736) (available 10 a.m. to 7 p.m., PST, weekdays)

US Dept of Health and Human Services Child Welfare hotlines by state


I am tired. I have not slept well in weeks. I can’t even blame my children right now. They have been sleeping relatively well, considering all of the transition heading our way. I am the one who is struggling with insomnia. Can someone explain to me why the hours of 12:30-2:30 am are perfect for waking up and perseverating on all of the issues of life?!

I woke up at 12:30 this morning with a pounding headache. I got up, took some pain relievers, and tried to fall back asleep. As I tossed and turned, the following items ran through my head…in no particular order.

1. I need to provide Jake’s birth certificate for an upcoming lacrosse tournament. Where the heck did I put our copy?! Is it in our bedroom? No, we moved that pile elsewhere. Basement, maybe? Ugh…I’m going to have to dig through more crap down there to find it. Seriously, why the heck do they need a birth certificate for U9 lacrosse?! Are people that dishonest?! Cripes.

2. Man, that game was good tonight. A nail-biter, for sure. That ref is sooooo lucky that the Hawks came back to win it in overtime…otherwise he was going to need some bodyguards. What a terrible call!! I am enjoying this playoff run so much better than the one in 2010. Mom was so sick then. I barely remember who they played when they won the Stanley Cup. Mom was a true fan…watched the games even when she was barely awake..and we were so proud of her for eating real food without that disgusting thickener. But she said everything tasted awful anyway. Such a big sign that her appetite was not what it once was…

3. Tate’s appetite is definitely back. Vyvanse really suppressed it. Focelin is working better to keep him focused, but MAN, that kid can eat again!!! Why does he have to overstuff his mouth? I know he’s looking for sensory input. The electric toothbrush that the OT recommended isn’t really working. Tate does not like that sensation. He plays with it enough, but just to watch the spinning head. He’s gaining weight. He has enough to struggle with…wish he didn’t have to worry about being the chubby kid, too. Maybe I need to stop letting him eat chicken nuggets, pizza, and cheese. But then what will he survive on? Fruit snacks? I need to cut back on his lemonade intake, too. I’ll switch to water for him tomorrow…he can have one cup of lemonade at each meal. That’s better than the 2 he is having now. I wish he’d eat fruit and vegetables. I really need to eat more vegetables. My weight is not what I want it to be. Yeah, I’m exercising, but dang, it is obvious that I’m not as young as I used to be. I don’t fluctuate. When I gain a couple pounds, it sticks around for a while. What happened to my willpower? I used to be able to eat like a rabbit and would be fine…now I am hungry all of the time.

4. Why can’t our ABA provider be straight with me. Seriously, just call me or send me an email to let me know what the plan is for the next couple of weeks. It is really annoying me that I still don’t know the name of our new therapist, nor do I know for certain what hours she’s working on her days. It shouldn’t be this hard to get the right mix of therapy. And why won’t more insurance companies cover ABA? It is research based and proven. What a crock. I should start insurance reform. (Bwa-ha-ha-ha-ha…like I have time for that.)

5. I need to email Jake’s teacher and see which boys from his class she thinks would be good play dates for him. I wish he had more friends. More friends who were boys. He just tends to play with girls at recess. And I really hope that he is not spending too much time with that Jasper. That kid rubs me the wrong way. He is naughty and kind of mean. I hope they aren’t in class together next year. Glad I wrote that note to the principal. Why the heck won’t the principal let Jake meet his 4th grade teacher this week? That was our original deal. Love how she conveniently pushed that back to Monday after school. She just doesn’t get it. Wish we had a principal who understood special needs kids better. I’m sure she hates me now because I’ve been so much more vocal this year. Dammit. I hope the boys don’t suffer because of this.

6. Man, Hubz is snoring loudly tonight. Let me just jab him…(poke Hubz in the side)there. I feel better. At least the snoring stopped. Of course, I still can’t sleep. He is out. He only sleeps like this when he’s stressed.  He is acting stressed. I wish that he wasn’t stuck at work so much lately. I am burned out. He is burned out. It doesn’t seem like his job is going to let up any time soon. And before we know it, he’ll be commuting downtown. That’s going to blow. I am going to miss the flexibility. And him. And the help.

7. It’s 2:00. I REALLY need to sleep. The boys will be up before I know it. And I need to sneak in a shower. And CRAP!!! I forgot to make lunches last night. Ugh…..I hope that Tate gets dressed easily for me this morning. Maybe Cole will sleep in. I hope he doesn’t start shouting for me when I get in the shower. That’s really annoying. Need to sleep. Need to sleep. One one-thousand. Two-one-thousand. Three-one-thousand. Oh, shit. I forgot that car insurance needs to be paid this week. And car payment. And Discover Card. And schedule Target payment. I’ll do that tomorrow. Oh, and I forgot to see what swim classes are left at the Y for Jake and Cole. Gaahh. Stop thinking so much! Go to sleep. Damn, my head STILL hurts…although it’s not pounding. Let me switch pillows. Ok…that’s better.

8. One-one thousand. Two-one thousand. Three one-thousand. Four…..snzzzz….

I woke up at 6 am with Tate shouting about poop. And thus began another day in the life….


That was…hard.

We woke up to a dreary, damp day. Considering that a significant portion of our spring and summer have bestowed upon us above-average sunshine, this is an anomaly for us.  Jake woke up “on the wrong side of the bed”. The weather was mirroring his mood. He was much more quiet and subdued this morning. He kept pestering Hubz about leaving for work. He kept asking me what our plan was for the day. He didn’t like my answer: first, breakfast, then Tate has therapy, then L and his brother are coming for a play date, then chill time, then tutoring with Ms. Tutor. Are you sure that’s what we’re doing today?! Yes, I was sure.

Jake avoided me for much of the  morning. When he would talk to me, he’d ask, again, what I had planned for the day. I reiterated our plans. He wasn’t impressed. Our play date was scheduled for 10 am. I scheduled this play date with L, and his brother, E, a while back. L and Jake were in the same class for second grade. L has some developmental delays, and he and Jake went to speech together last year. They had a few play dates..and keep up well with each other. E is typically developing. He went to a different school for kindergarten, but will be new to the school this year for first grade. I figured that we could have Tate’s therapist facilitate the play date with Tate and E, and L and Jake could play. I had been telling the boys about the play date since last week, to get them prepared.

10:00 arrived, as did our play mates. Jake refused, REFUSED to move off of the couch. Tate was in the basement with his therapist. I came to the door to greet our guests. L and E bounced into the house. L immediately asked where Jake was. I told him, and off he went. E followed his brother. I called downstairs to Tate and his therapist, and they came up, too. This is where things went to crap.

Jake came into the kitchen and asked to play with my phone. I said no. He slunk back into the family room and watched tv while L and E and Tate played with Legos. Cole bounced between all of the older boys. I invited Jake to play Legos. He refused, rolling over on the couch to hide his face. I turned off the tv. Jake ran into the living room and began to have a complete, no-holds-barred tantrum. I was momentarily gobsmacked. (I threw that into this post as a homage to the conclusion of the Olympics…London, we’ll miss thee…)

I gathered myself and asked Jake to explain what the issue was. He couldn’t. He just kept tearing up and then shutting down. He was flailing, on the couch, and throwing things. I told him it was time to go to his room for some quiet time, mainly because I didn’t think he needed to be having his meltdown publicly. He stomped up the stairs. L made his way up to Jake’s room and was talking to him. Jake just laid on the bed, face down, and pounded the mattress, without even addressing his friend. I was mortified. I told Jake he had to at least acknowledge his friend. He muttered, “L, please leave me alone.” and rolled over. I asked L to come back downstairs to play.

So, E, L, and Tate played with Legos and shared our Nintendo DS while Jake calmed down upstairs. It took Jake about 7 more minutes to come back to us. Even then, he would momentarily disappear to other rooms. Thankfully, L & E’s mom is accustomed to social deficits and meltdowns. She didn’t take offense. Neither did her children, for which I am ever grateful. I am just absolutely beside myself. Jake has difficulty in social situations, I get that, but I had prepped him for this. I had talked about it. I gave some suggestions for activities. He has played with L before. He knows L. None of my usual prep worked, though, as Jake clearly was unable to handle this routine change today.

I imagine that the anxiety of back to school isn’t helping. I know that the reality of the tensions and social frustrations and difficulties with subject matter are surfacing. I know Jake wants this unstructured, I-can-escape-in-my-game-and/or-tv-show to continue forever.  It’s all perception, I guess. To me, this was supposed to be enjoyable. An opportunity to have some fun with a friend. Instead, it caused Jake an incredible amount of stress and angst.

In the end, Jake and L bonded over a game on our tablet. Jake allowed L to “drive” and preferred to just watch and narrate…but they were connecting and interacting. L’s mom and I sighed in relief…we both want the boys to connect. To have another friend. To know they aren’t alone on that first day of third grade.

Sometimes it is so hard…because wishing it so doesn’t mean it will be so. For some of us with neurodiverse families, there is a lot of blood, sweat, and tears behind those moments of friendship, connection and play time.

Happy Dance

I don’t have much time to write, but I wanted to give a quick update. Yesterday I waited in line with several of my closest fellow residents to prove that we live where we say we live. In reward for waiting in our line (which we were told was half as long as it had been earlier in the day), we got to find out teacher assignments, schedules (for older kids), and bus schedules.

As I approached the table for our part of the alphabet, I had butterflies battling it out in my tummy. Please, oh, please let Jake and Tate get good teachers. Please, please, please, God, if you’re listening, please let Tate be at our home school. I got to the front of the line. I handed the kind woman our forms. She pulled our packet out of the box. Insert halting record…

Um, we don’t have record of Tate’s registration papers. Did you fill them out?

Yes…I did. The district cashed my check, so they got our packet.

Weird..well, we’ll walk over to the Help Desk as soon as I prove your residency.

Ok. Here’s our mortgage statement, our water bill, and my license.

Perfect. You’re “proven”. Ok, let’s get these papers checked out.

I was led to the Help Desk. It felt a bit like the “walk of shame”. The woman there pulled up our name. No, Tate’s registration papers were not anywhere to be found. I let them know that his packet had been returned to the school where his Early Childhood program had been. They may not have made the transfer to the new school. They had record of our payment, so we’re good. (Of course..they got the money…who cares about my kid being permitted to have his picture taken or using the computers in the school or, well, you know, formally registered. I was told they’ll contact me about the paperwork.)

I thanked the kind woman, and then stepped away to open the envelope. My heart was racing. I felt light headed. I reached in and pulled out the assignment sheets.

“To the parents of:  Jake “Hope”

Your child’s teacher will be:   Room xx– Ms. Tutor”

Yes!!!!!!!!!! Jake got his current tutor for his regular education classroom. Whoohooo!!!! They have established a bond. She has talked with his resource teacher. She knows that he was evaluated for ADHD. She thinks he has loads of promise. She’s impressed with his progress this summer. I couldn’t be happier.

Then I pulled out Tate’s forms.

“To the parents of:    Tate “Hope”

Your child’s teacher will be:  Room xx- Mrs. SpEd Teacher/Room xx- Mrs.First Grade Teacher”

Tate is in the classroom we were told he’d be in for “Instructional First Grade.” He is going to be at our home school. He will be mainstreamed into the second teacher’s class for specials, at first, and ultimately, we hope for academics. That was Jake’s first grade teacher..and she is amazing. She is a terrific teacher.

We hit the jackpot.

Now the real work begins. I have already sent off emails to Tate’s teachers and the principal and coordinator to start working on an alternative schedule for Tate so that he can go to school AND still receive ABA therapy. I am working with the ABA team to make sure we have full coverage on days that he can have therapy.

Today at 3 we meet with Jake’s neuropsych to find the results of his testing. I can guarantee you that tomorrow I’ll be sending emails to Jake’s team regarding his diagnosis and any changes that may be required to his IEP based on his diagnosis.

We’re getting there…we’re getting there….thanks for listening to my rambling and my anxiety-riddled posts. This outlet has been amazing..and it’s so uplifting to have people supporting me here. Thank you all for following our story…for holding me up when I feel like I’m falling. It means the world to me.


My older boys start school 3 weeks from today. Before I do my celebratory cartwheels down the block, I have a lot of preparation to do for our foray into the 2012-13 school year. A lot. At these times, as my anxiety starts to rise while I make and revise my list of “Things to Do”, I wonder if families of “typical” children have as much stress…it’s something I would have asked my mom, but well…yeah….

Don’t get me wrong…I am certain that every family has a certain amount of stress that comes about with the beginning of a new school year. New teachers, new classes, more demands on children in terms of expectations, etc. I know everyone has that “Eleventh Hour” stress of “will-we-get-it-all-done-in-time”. But is there the utter feeling of panic ?

Monday is the district-wide residency event. Every year we have to prove where we live. We need not one, not two, but THREE  identifying documents. I have those set aside for our big day. That day, once we prove that we are, indeed, living well within district lines, they will hand me 2 envelopes. In the envelopes will be my boys’ teacher assignments. There are 3 sections of third grade at our school. Just about everyone that I have talked to wants the same teacher. That teacher happens to be Jake’s math tutor. I wrote a letter to our principal last spring, detailing the ways in which Jake learns/struggles/benefits in school (this supports getting his math tutor as a teacher). I talked to his IEP team about his placement. I have everything crossed from my toes to my eyes. Please, oh please, let us get this teacher. Jake is comfortable with her, she “gets” Jake, she pushes him enough, but not too much, and she is all about working with the resource teacher to enhance the learning experience.

Once I get the envelopes (and yes, I totally feel like we’re going to the Academy Awards…but without the red carpet…the fun, awesome “swag”, and the pre-and post-parties), I will be sending a message to Tate’s teacher regarding his schedule. The district wouldn’t meet with us at the end of last school year to work out a schedule for this year to accommodate ABA because schedules aren’t final until August. Ugh. I want to find out what classes and therapies he has when, and when I can pull him for the day during the week so we can do ABA. I am currently developing an ulcer over this.

Tuesday afternoon we get the official results and report from Jake’s evaluation. I will barely have enough time to digest what’s going on with my kiddo before I’m on the phone with Jake’s regular ed teacher and resource teacher (she at least will stay the same this year) to discuss and figure out if we need to meet again to adjust his IEP. I am fairly certain we will, because, well, they want to pull him back to a half hour of speech services (from his 60 minutes in grade 2), and well, his primary qualification for special ed is speech/language. I know…right??? The doctor informed us during our parent meeting that she totally disagrees with that and will word her report as such. (SCORE!) I hope that we can negotiate it for Jake.

Tate’s therapists are reading a social story with him right now. It is about his new school. He is doing ok with it. He knows the school, as it is the one that Jake attends. We have that in our favor.  I want to bring him to the school next week for a little walk through. We don’t need to go into his classroom, but I want to have him walk the halls, see the gym (which he hates thanks to all of the events we have attempted to attend there over the past 3 years), see the cafeteria, the library, and do the walk to the classroom. I’ll let him play on the playground, and walk in the parking lot. He can sit on the benches outside and check out the flag pole. His ABA therapists are totally game. Just have to make sure that the school is.

The more I read about special needs parenting and advocating, the more I realize that I need to put together packets of info for the teachers. Sooo, I am working on getting these together for the boys’ teachers. It’s the least I can do to help foster a mutually beneficial experience for everyone…but it’s just another thing that needs to get done to help my boys succeed.

We are starting the school year evening and bedtime routines next week, as well. I am going to try to get them to pick out their clothes the night before. I want to instill a reading time before bed, since no one wants to read when they get home from school. I am also hoping that limiting tv time right before bed..or within a half hour, helps a bit with readying their bodies for sleep. It will take a couple of weeks to get this established, so we have to start early.

Even though I get a certain “high” from school supply shopping, this hasn’t been done…I need to do that, too. I have discovered that none of the males in my household like this particular adventure. I have tried to pick up a few things when I go to the store, but Tate is quite adamant that school supplies are stinky and gross, so he’s had a couple of those I’m-laying-on-the-ground-and-writhing-until-you-let-us-leave moments. It was great. Especially when Cole joined in the “fun”. The supplies this year, at least, seem reasonable, and I won’t have to try to find a 25-pack of “white paper lunch bags”. What the what?! Yes, last  year I had to supply a package of 25 “white paper lunch bags”. I have absolutely ZERO idea what those were used for in the classroom. ZERO. Never saw those 25 bags again (Party-City, by the way, carries them…) Oh, and we had to buy a package of 2-gallon sized Ziploc bags for Tate’s classroom. Uhhh…thankfully my neighbor was able to give me some insight–Walmart (shudder).

So, we have all this prep work, in addition to trying to arrange some outside therapies, ABA therapy, Jake’s swimming, religious education, and possibly tae kwon do. Of course, I have the added worry about how anxiety will affect the boys, and whether they’ll be able to attend in class, and focus on homework once they’re home, and juggle their therapy and schoolwork, all while trying to allow them to be “kids” as well.

I wish it were as simple as packing up a backpack, buying a pair of new sneakers, giving my kid a few bucks on his lunch card, and sending him off to school with a kiss. But, alas, that is not our world. It takes a lot of preparation…a lot.


Roller Coaster

I’m sitting in the waiting room at the Neuroscience center. Hubz and I have finished our parent interview for Jake’s evaluation. I have a pit in my stomach. I am uneasy. I feel like having a flight or fight reaction, and quite honestly, I’m not sure which one is going to win.

The neuropsych sends her intern to ask Hubz and me if we had Tate genetically tested. I let her know we didn’t. The geneticist said Tate didn’t have any physical markers of genetic disorders, and honestly, we decided to hold off. We were also asked if he saw a neurologist about possible seizures. That we did…we did a regular EEG and the sucky 48-hour EEG. Both showed no abnormal activity.

A little time passes. Hubz leaves to get me coffee. The intern reappears. Based on your answers in the interview, family history, and Jake’s performance in the testing, we want to ask more questions focused on the Autism Spectrum. Can you come back with me?? My heart sinks. My stomach flips. Sure…no problem. I’m choosing fight…for my kids.

I sit in the doctor’s office. I answer her questions.
Yes, he struggles with eye-contact.
No, he doesn’t have flat affect or inappropriate reactions.
Yes, he flaps and has some strange movements.
No, he doesn’t get obsessed with small moving parts.
Yes, he approaches peers and is interested in them.
Yes, he initiates conversation….but, but he struggles to sustain it. If he is confronted with a topic he knows nothing about, he steers conversation to his interests.
No, he doesn’t have echolalia.
Yes, he uses some scripts.
Yes, he shows joint attention.

I’m handed a form and am asked to fill it out. I remember this from our visit with Tate. It’s a screener for ASD. The doctor tells me she’s going to administer the ADOS to Jake. I sign consent. I’m lead to the waiting room. I sigh.

I finish filling out the form and hand it to the receptionist. Hubz comes in with my Chai Latte. I tell him the latest. He says he’s not surprised…we both look straight ahead and sigh.

This waiting….this evaluation process…it is hard on all of us. But, we do what we need to do. Now that we are sitting here waiting…my head spins…what if Jake is on the spectrum? What if it’s just ADHD? What if…what if…

To be continued….

Should I sweat the small stuff??

In two days my oldest son will make his First Communion. I am so excited for him, as it is a big rite of passage. At the same time I am feeling overwhelmed. Will we get everything done in time to celebrate? Will he feel special? Will he remember the day fondly, as I remember mine? Will his brothers remain entertained and not interrupt the Mass?

I feel akin to a school kid who’s muddling through finals week. I’m going through the motions, but am I doing this right? Am I giving it the correct balance of celebration and reverence?? Will I pass the test?!

On top of the First Communion, I am trying to get summer figured out. Registrations, payments, transportation, etc. I feel like I’m always behind the 8-ball. Do my kids know how frazzled I am? Do they know I feel like a basket case? In the end I am usually able to pull it all off, and they go where I tell them…and life is good. But it’s the behind-the-scenes minutae that is driving me insane right now.

These are totally the moments where I miss my mom. Did she fumble around like this? Did she have insecurity? Because, to me and my sisters, Mom was the master. She sailed through this motherhood thing like it was a small, calm lake. To me, she was self-asssured and had it all figured out. She made it look easy…and I strive to be like her…but right now?! I feel like a mess. I could use a hug and a pep talk right about now…

Two years ago as my mom was convelescing, we talked about many things…and I made sure she knew how much I loved her, how much she meant to me and the boys, how she was my role-model. I didn’t think to ask if she ever felt like this…or how she got through it…or if it made her life frought with anxiety. Oh well, I guess if it didn’t seem important then, in the scheme of things, it mustn’t be so important….and as long as my boys know that they are loved and feel celebrated, at least I am doing something right….right??

Tag Cloud

Mama Is Only Human

my journey...

Zero Exit

by Sara Jagielski

Musings of an Aspie

one woman's thoughts about life on the spectrum

Emma's Hope Book

Living Being Autistic

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Exploring the Colorful World of Autism


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Grady P Brown - Author

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Swim in the Adult Pool

Finding humor in an ADHD life without water wings

Organized Babble

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Addicted to Quippsy

In the not-so-distant future, you'll wish you wrote down everything your kids said. Now's your chance!

Filtered Light

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You know the one I'm talking about . . .

Run Luau Run

Run Committed

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sharing resources to create caring classroom communities for all children

The Domestic Goddess

Marj Hatzell Has Been Giving Stay-at-Home-Moms a Bad Name since 2005

"Write!" she says.

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Autism & Oughtisms

Dealing with the endless "oughts" of parenting and autism.