Notice this is titled constant, NOT consistency! This summer has been anything but consistent to date and that looks to remain the same until school starts.
We began our summer with our annual week at the cabin with my brother-in-law and nephew. It was amazing, as always. My nephew is getting so very big. It was fun to watch the boys play on an entirely new level this year. We did more hiking and more swimming and more geocaching and more just being together. It was hard to leave each other at the end of the week. But we all left with the promise to meet up again next year, same bat time, same bat channel.
We returned home to prepare for the boys’ first diving meet of the summer. We traveled once a month throughout the school year to various locations around the state of Ohio. Summer promised to be much closer to home. The first meet was only about 45 minutes away. Thankfully the summer meets are smaller in size which makes for much shorter meets. Meet #1 Keegan took first place out of 8 children diving and Eli took 2nd. They were only separated by three tenths of a point! It was amazing to see their confidence boost! This meet meant that they were only at their summer camp for 3 days the very first week that they started.
The next week my other nephew came for a visit and stayed the entire week. The boys got to go to camp together at the local children’s science museum. They had a blast. It was Super Splatter Science camp with a disclaimer that the children attending had better be prepared to get messy. Perfect for 3 boys! They tye-dyed t-shirts and made volcanoes and elephant toothpaste along with a plethora of other things. They were exhausted every day when I picked them up. A sign of a good camp, I’d say!
July began with more inconsistency. Only 2 days of camp, another diving meet and then the 4th of July holiday break. Again my boys took 1st and 2nd place. They were the only two divers in their division but Eli got to be 1st this time and it was yet another great opportunity for a confidence booster. We celebrated the 4th by watching fireworks from our front yard with friends. Then we packed up and headed north for the weekend. We played at the lake and the boys went boogie boarding. Lots of laughs and fun until Keegan caught a virus and was in bed with a high fever for 2 days.
We returned home to prepare for yet another diving meet. Again it was 1st and 2nd place – Keegan in first this time. Again they were the only two diving in their division. I love that they didn’t care about that part! They just took pride in the dives they did and the ribbons they received!
This week we find a little of whatever normal seems to be. They boys get to go to camp for 4 days – I don’t think they’ve been to their regular camp for an entire week yet. We will finish off this week with a diving meet championship for the boys on Friday. Then on Saturday I am rowing in a dragon boat race. The boys are so excited to come down and cheer me on. I’m excited to be a part of something so amazing! Sunday we get to go to a birthday party. Then the week starts over with normal, I think…
As crazy as our summer has been and as quickly as it’s flown by, it has truly been a summer of fun. We have laughed and played and watched movies and just enjoyed being a family. There has been a minimal amount of anxiety over the diving meets. There have been a fair share of brotherly fights but there’s not much to be done about that.
We are looking forward to another month of fun before the calendar screams that it’s time for school to begin. Then my 2nd and 3rd graders with walk through the doors of their elementary school, new backpacks, lunch boxes and school supplies in tow. Who knows what kind of crazy that will bring!
Notice this is titled constant, NOT consistency! This summer has been anything but consistent to date and that looks to remain the same until school starts.
I’ve been away for far too long. I’d be lying if I said I wasn’t sure why.
Life fell apart. It does that sometimes.
Instead of venturing out for help, I closed the door. All doors.
I forgot that I have friends for a reason. I forgot that this is my space for venting and laughing and crying and being me.
Perhaps it was the voice in my head saying people will judge like they did when we asked for help once before. You didn’t judge – you were there for my family. Others? Others judged.
So this time? This time I closed the door.
I am the mother to a child with Asperger’s. A child with anxiety. A child who had a very rough end to the school year. He lost it and so did I.
I’m thankful for his amazing counselor who got us through so much.
I’m sad that I lost touch of this space for so long.
So I’m peeking out of my corner and running to home singing “Oly Oly Ox on Free!!!”
I’m back with fun, frivolity, laughter and tears.
I hope you’ll still have me! I’ve missed you all
My dearest Keegan,
Today you turned 7. It seems like only yesterday that you were being placed on my belly and I was straining to see if you were the little girl everyone thought were going to be. You had your own April Fools joke to tell when you showed yourself to be the sweetest of little boys.
You are the most sensitive of angels. You refuse to watch a sad movie more than once. Your feelings are hurt so easily. You love all creatures. Wicket is truly your best friend. You two rarely go anywhere without each other. You hurt when others are sad or sick. You try to make everyone feel happy.
Even at seven you are my snuggler. You love to curl up with me on the couch under a blanket. You prefer to sleep with a mommy whenever we go to the cabin. You get upset if you miss a hug or kiss goodnight. You still like to be sung to and have your hand rubbed to get you to fall asleep. I think if the two of us could still fit in a rocking chair together you would still let me rock you to sleep.
Still, you haven’t quite found yourself. You strive to be like your big brother. You try to like the things he does, even the things we do. But you haven’t quite found your happy place. I long to see that happen for you. You have an amazing smile and I love seeing it. I just know when you find who you are I will see that smile so much more often.
I have had the last seven plus years to get to know you and I have only barely scratched the surface. I can’t wait to see what else lies beneath.
I love you Keegan. I hope today was the happiest birthday yet.
I had lots of fun with photos this week. The world gave me so much to work with!
Nana and Papa joined us at diving for the first time last Wednesday. There was so much pride in their faces. Nana kept shushing us if we even considered talking while the boys were on the board or jumping off the side of the pool. It was fun to watch them watching their grandsons.
The cake, before. There were also Rice Krispie treats and finger jello that were made up in anticipation of putting it all together. It took everything that we had to keep Keegan from eating the cake alone!
I can’t believe how fun this cake ended up being to make! My honey made the finger jello and worked very hard to get swirls to stay in the blue jello. It actually looked like water. I loved placing it by the Rice Krispie treats and having it resemble wave coming up on shore. The pig was a major pain in the ass to make but I smiled every minute of making it knowing that Keegan would simply LOVE the fact that I took the time to put an animal on the cake. There is not a day that I regret taking that cake class and taking my boys up on the challenge to make all of their cakes.
I share this one from the day of the party again. It’s my most favorite picture. This is the Keegan I know and love. This is the smile and the laugh that makes me fall in love with him every moment of every day. I love how beautifully this picture captures all that he is.
Eli has been really into crystals lately. Not sure how it started but now he is reading all of the books we have in the house about crystals and looking things up on the internet. My honey and I bought this geode ages ago, in another lifetime and it’s just been sitting on our shelf waiting for the right person to set it free. Eli and Keegan took turns hitting it with a hammer. The smiles when they finally broke it open were priceless. We spent hours afterward trying to figure out the prize inside. They both have it in their backpack to take to show it to their friends. I love how proud they are.
Tuesday showed buds on a tree and today brought snow. Not a lot but enough to cancel school for the day. The boys came together to roll this giant snowball. They attempted to roll more to make a snowman but there just wasn’t enough snow. Sadly the weather warmed up and all we have to show for it is this large ball of snow in the backyard.
What inspired you this week?
I’m crazy. I know it. It’s never been a secret.
Saturday I welcomed 8 boys into my home to party with my 2 boys to celebrate Keegan’s almost 7-year-old birthday. And party we did!!!
It started with the cake. Keegan requested a Minecraft cake. I know NOTHING about Minecraft. The boys made me play it a couple of times and I was confused as hell. I just don’t get it! So thank goodness for Pinterest. Without it this birthday party would have been a wash!
A little something for everyone. Chocolate cake with frosting, Rice Krispie treats (regular, red and green colored), red and blue finger jello. The cake went over HUGE with the 10 boys in my house. The birthday boy got the pig of course
I hit the Minute to Win it website for some party games. The boys must be entertained. 10 boys in one house can be crazy destructive otherwise! I came up with some great ideas that seemed to keep the boys truly happy.
The boys played a foam noodle battle while standing on 2×4′s. The goal was to push your opponent off the board. The boys were all laughing so hard they ended up falling off the boards! It was a blast.
Then we worked to keep balloons in the air for 2 minutes. It seemed easy enough until I started through the crowd hitting balloons away from their owner! Afterward we though that using a fan would have been a great idea too. Hind sight 20/20.
When that game was through we used our balloons in another really fun way. We popped our balloons!!! When needed we used friends to help us. If there weren’t already giggles galore there were a thousand times more now.
Finally we played the boys most favorite game. They love pin the _______ on anything themed to meet their party needs. Keegan asked for a creeper and a creeper I delivered. We pinned the eyes on the creeper and it too was a blast. The boys couldn’t wait to get in line. Some cheated – as boys are want to do. Keegan lost track of where he was (only a little I think) and pinned the eyes on me instead. His reaction was totally worth it!
Then it was presents and cake.
I had a completely different post all set for today but this story needed to be told instead.
A little over 3 years ago I met an amazing mom and her remarkable daughter. My very first meeting with them was in the Pediatric ICU at a local hospital. Her daughter was almost 3 months old and had never been home from the hospital. During my visit a resident came in to talk to mom about signing a DNR for her daughter. Mom was devastated. We had just been talking about her dreams for her daughter. Dreams that included getting cochlear implants and making sure she can see and getting her to walk and watching her grow up. This resident attempted to pull the rug out from under those dreams. After he left the room mom shook her head and told me she didn’t care what the doctors said. She wanted more for her daughter. She wanted to dream for her and just let whatever happened happen. In that moment I knew I was sitting next to a young woman so much braver than I could ever be.
Time went on and I continued to meet with this family at the hospital. I became as much a staple there as many of the doctors and nurses. The staff questioned why I would provide services to a child who was just going to die. I could have asked them the same thing. Should have asked them the same thing. I am an equal opportunity developmental specialist. All children deserve everything that I have to give them and then just a little more. All children deserve my absolute best. And this sweet angel certainly got it.
Certainly for a long time much of my job was to support mom. She had doctors constantly telling her to send her daughter home and let her die. A doctor told her to stop playing house with this innocent child and just let her die. Just let her die. A common phrase heard over and over again by this mother. A phrase that the physicians made sound so very simple. This life is not important. Just let her die.
Thankfully her mother loved her with all of her heart. She ignored the doctors. She found new doctors who gave her hope. Doctors who saw the child behind all of the diagnoses and disorders. Doctors who felt the love this mother had for her daughter and fought with her to make her baby healthy again.
Eventually, that sweet little girl did come home. In her first year of life she was home for about 6 weeks total. Mom’s goal for the 2nd year was to increase that exponentially. And, increase it she did. Her sweet daughter was home for almost 8 months during her 2nd year of life. She was starting to make developmental gains. She laughed when you tickled her. She smiled every time mom talked. She began to respond visually. She was showing all of the doctors just what she was made of. Deep down her mom already knew. Her mom did a scrapbook for her. Pictures of her first couple of years of life. She was certain to mark the days that the doctors told her to say her goodbyes, that the end was near. So many of those days were marked in this beautiful scrapbook. Each of those days her little princess laughed at and moved on to live another and another and another.
Mom got involved with Make A Wish about a year ago. She didn’t want to take her daughter to Disney or do any of the “typical” things that families tend to do. The Make A Wish staff suggested a party. A party to celebrate her daughter’s life. A party for everyone who has known her and met her and fallen in love with her to come and see her and play with her. The day of the party was beautiful. The park was packed with people who knew this little girl. People who loved her and her mother. It was truly a day of celebration, a day to honor this amazing little life.
I said goodbye to this family about 9 months ago. Mom had an amazing opportunity in another city in another county. She was going to be able to finish school and have some family in the area to help support her. We cried a little together because of all that I had helped support her through. She promised to keep me updated on her daughter’s progress. I was excited for all that was to come for them.
Today I got an email from mom. She started by saying how much she missed me. She wanted to write me sooner but just couldn’t bring herself to do it. Her daughter passed away in January. Mom was rocking her in their rocking chair, holding her and cuddling her and getting her ready for bed. In that beautiful mother/daughter moment her daughter decided she was done fighting, done having a body that didn’t allow her to be the fighter that she was. She was in her mother’s arms, the happiest place she’d ever known. She was feeling the love that surrounded her. She died suddenly, quickly and without pain. She simply closed her eyes and was gone.
As I read the email I cried. I cried sad tears for the loss of such a very young life. I cried happy tears for the beautiful way this little girl chose to go. What a lovely memory this mother has of her last moments with her daughter. No hospital room, no machines, no doctors. Just a mother and her daughter in love. For a mother who knew that she would have to say goodbye to her someday I could think of no better way for it to happen.
Tonight my heart aches for this mother. It aches for all of the little souls who have had to move on too quickly because their time here was through. I am blessed to have known this mother and her daughter. I am a better person for all that this little angel taught me. She touched so many lives in such a short time. And now she is a smiling angel in Heaven.
A little over a week ago I got our Direct TV bill in my email inbox. I negotiated with them about 6 months ago for about the fourth time to get our bill lowered. Last week it went back up to regular cost. I about had a heart attack. The mere thought of negotiating with them yet again made my brain ache… I was done. I couldn’t do it again.
I sent out the all call on Facebook. It was time to rid our home of the satellite dish once and for all. But could we do it? I’m not a major TV junkie but I do like my shows. 2 Broke Girls, Mike and Molly and Castle on Monday nights. The occasional Criminal Minds on Wednesday nights. Parenthood whenever I remembered it was on. Big Bang Theory, Grey’s Anatomy and Scandal on Thursday nights. I couldn’t live without the shows I really, really love to watch. But, I was willing to wait an extra day to watch them if it meant saving us some $$.
My Facebook pals did not let me down. Within a matter of an hour or two I had tons of responses from people just like me. People looking to save some money but still have worthy TV to watch. People with kids who know how to get them through this transition. I did my research on Hulu Plus and Amazon. We had Netflix before and were more than happy to get that back up and running. A friend suggested a streaming device like Roku. So I did some research on streaming devices. I took inventory of what we already had available to us. The Blu-Ray in our bedroom streams Netflix and Hulu. The other Blu-Rays in the house only stream Netflix. The one in our bedroom is there because it doesn’t play discs well anymore so moving it to the big TV downstairs was simply not an option.
Saturday morning I woke up with my mind made up. Today was the day that Direct TV would lose control over my TV watching life. I talked with the boys about the change. They were really bummed until I mentioned Netflix. They LOVED when we had Netflix. I also talked to them about the money. They are old enough to understand that concept. When I explained that we would be saving about $1000 a year by dropping Direct TV they offered to take the dish off the side of the house for me!
I made the call to Direct TV. The representative on the phone tried to lure me in with $10 off each month and free pay channels. I asked him if he could get me down to the $16 a month Netflix and Hulu were going to cost me. He started my disconnect immediately. After hanging up the phone with him I moved from room to room and disconnected the receivers from each of the TV’s to go back to the company.
We headed to Best Buy next to get a Roku streamer for the living room. The boys don’t need more than Netflix in the basement and we were set for our bedroom. I took it home and hooked it up and the rest is history.
We streamed a movie on Netflix for popcorn and movie night on Saturday. The boys have been loving watching “old” episodes of some of their favorite cartoons. They also like that they can watch a show when they want, not when it happens to be on TV. Even I haven’t had the withdrawals I anticipated. I am alone in my living from around 8pm each evening until I go to bed – usually midnightish… I often have the TV on. What I realized is that often it’s on for background noise and nothing else. Tonight I watched last nights episode of Castle. It was a great episode and I was fine with seeing it tonight and not last night. Really everything but Big Bang Theory is easily accessible to me. Big Bang? Well that I’ll just have to continue to watch on my computer.
What we have learned from this experience is that Pandora has become a staple in our house. We still need our background noise but now it comes in the form of kick ass music. We have learned that we are certainly able to survive without paying ungodly amounts of money just to have a few TV shows. We have learned that we have much more control now over what the boys watch on TV and how much TV they watch. Also, they are more willing to move away from the TV because they know they can pause a show and come back to the same spot later. Really this has been nothing but a win/win for us. My only struggle now is trying to finagle a way to be able to catch local stations mainly for news purposes. The rest I could care less about now.
So thank you Direct TV for driving your prices so insanely high that I finally made the plunge. I believe that we are already all the happier for it.
Time for the Tuesday photo dump
The view outside my window at work as it was snowing and blowing last week – so very gloomy…
Wicket’s “baby” – it used to be a stuffed chinchilla. Now it looks more like a drowned rat…
The SUN!!! It finally peeked out for a day!!! It felt so very good to be outside.
My little grill master. Eli decided that HE was cooking dinner for all of us. He made Crabby Pattys a la Spongebob. They were delicious
Spring is beginning to shout its presence. The crocuses and hyacinths and daffodils and tulips are peeking their little heads through the dirt and mulch. I can hardly wait for their blooms!
Wicket and his “baby”. Yes, off to the right of him is some of the stuffing that is still coming out of the
drowned rat chinchilla. He’s very protective of his baby!
My view of Pandora today. My Elton John channel. A very wonderful friend bought me a subscription for Christmas. There is nothing quite like Pandora without commercials! I have been spoiled and will never be able to go back!
I’m having so much fun looking for the beauty in my day. I’m excited to go back and review it all a year from now. A day in the life and all that jazz…
It’s the only word that I have to describe Eli’s IEP meeting last week. I wanted so badly to add it to a “Happy This Week” post but just couldn’t find the time!
Thursday afternoon we had Eli’s annual IEP meeting. His teacher, interventionist, OT, Speech therapist and principal were there along with myself, my honey and Eli’s worry doctor. First, let me say just how wonderful it was to have the worry doctor there. He is incredibly knowledgeable in working with children with anxiety so he gets Eli and understands a variety of ways to help him. He knows IDEA and ADA inside and out and recognizes how to work with schools to make accommodations to meet the child’s needs and the verbage of the laws. He brought a lot of great ideas to the table that will, hopefully, make 3rd grade a wonderful year for Eli. Second, let me add that I love the people that we work with at this school. I have had some issues with Eli’s teacher this year, only because I don’t think she truly understands him, nor has she taking the time to understand him. I love, Love, LOVE his interventionist, OT and ST though. We’ve had the same OT and ST since kindergarten and they are two of the most amazing women. Eli has pushed them outside of their normal routines… I’ll get into that in a bit ;) The principal is so easy to talk to and so understanding. I feel like I can approach her with anything and have done so in the past. She is no different in the middle of an IEP meeting.
We started the meeting just updating everyone on changes in Eli recently and talking a lot about the IOWA testing that was grueling, to say the least, for all parties involved. The therapists updated us on some new things they are working on. Eli’s OT has been working on teaching him typing skills since writing is so very hard for him. My second grader is learning to type! Added bonus that the typing is strengthening his hands and his writing is beginning to improve :) The OT is so thrilled with the results that she’s going to start doing typing with kids at a lot younger age than she used to because of Eli’s amazing results. The speech therapist updated us on some of the social stories that she is using with Eli and shared that Eli is now having to come up with some solutions to the stories on his own. He really is growing. The interventionist shared the results of some recent testing that was done with Eli. My son is reading 132 words/minute and has a similar comprehension level when asked the “right” questions. I don’t think I can read that fast! I wanted to cry and run out and hug his private OT who recommended the neuro-optometrist who recommended the vision therapy we did with Eli. Obviously it paid off and he is now able to read at the level his brain is ready for. Everyone shared that Eli is also starting to read with more inflection and emotion when reading out loud. He has always read in a very monotone voice and read very quickly. He is starting to slow down so that others can understand him and actually follow the emotion and punctuation using changes in his voice.
Then to the goals. Only one for next year. It sounds so simple to have only one. But what a big one that is. A combined communication and social goal. Multiple strategies listed below to help us accomplish this seemingly lofty idea. Lots of social stories, lots of social groupings to practice.
On to services. Only a little clarification needed regarding OT services. Otherwise pretty status quo until accommodations. This is where the worry doctor really stepped up. We talked a lot about Eli’s testing anxiety and how to help him be able to show that he knows all of his math facts without having to take a ridiculous math test in 2 minutes. I remember doing that and it sucked! Eli has to do it, gets stuck on one problem and then perseverates on the amount of time he has left – so much so that he doesn’t complete the test after the one problem that he had to stop and think about. The worry doctor had some amazing ideas about how to help Eli through this and still meet the state standards for testing. There was a lot of talk about what teacher he would have next year so that this would not be an issue. We got stuck a little on wording in the IEP so that Eli was covered and no one would have to do extra paperwork. The discussion was fantastic, everyone had an opportunity to speak and give their opinion. State standards were discussed along with Eli’s needs in a very positive way. My heart swelled knowing just how much these professionals care about my child.
We moved through the rest of the IEP without glitch, mostly. The interventionist made a joke about not worrying about transition to junior high as we still had plenty of time for that. I lost it. I know my honey was secretly laughing at my own anxieties. Thankfully, our team recognized that we needed to discuss the issue and not just brush over it. We had a great discussion about his transition to junior high (in 3 years!). At the end of the discussion the principal winked at me and asked if I’d like her to write me a social story. It was a lovely, heartfelt moment. She recognized how worried I am about that change and I know that she will help us to see it through.
We left the meeting feeling very fortunate and very cared for. We know that not all IEP meetings go this smoothly. I know personally from reading your stories that many IEP meetings do not go this well. We smiled knowing that somehow we were granted this amazing group of people who truly care about the welfare of the children they teach and care for each day. We smiled knowing that we have an excellent plan in place to help meet Eli’s needs and to help him excel where he is most talented. We smiled knowing that many of these same people will move on with him to third grade.
This fall we will meet a new teacher and we will invite her to be a full member of Eli’s team as we have with all teachers and interventionists in the past. We hope that he or she will accept the honor of becoming a part of one of the best teams around.
You have been able to talk for so very long now. You used words almost as soon as you could walk. You called me “mum”. You called mama “mum-mum”. Like you were a little British boy.
There is video of you when you were not quite two years old. You are playing in the yard and you hear an airplane fly overhead. You look up and point. You say “airplane go to France aunt Lynda and uncle Barry”. That whole mouthful for such a little person.
From the moment that first word was uttered you haven’t stopped talking. You always have something to say, a story to tell.
And yet, here I sit. Frustrated. Sad. You can’t tell me how you feel, or why. You can’t put to words the things that are bothering you. You use anger out of your own frustration. You hit, you throw, you break things. You are just as frustrated as I am, though you show it in different ways.
From the outside looking in you have no disability. Those who don’t know you see you as just an angry child. A child prone to outbursts. A spoiled child who pushes buttons to get his way.
The rest of us know the real you. The you who loves to learn and strives to learn everything he can about the topic at hand. The you who gives ocean wave hugs with the most love and loves to be tightly squeezed in return. The you who needs to talk about your current favorite topic, whether or not anyone else cares. The you who can draw dragons so beautifully. The you who can’t share his feelings without getting angry. The you who sometimes cries and you don’t know why. The you who loves to read. The you I love with all my heart.
This crazy disability grew inside your mind and made you who you are today. I love you for all that you are and strive to help you continue to survive in this big bad world. For now, you are realizing that you don’t often fit in. That most kids like you for a short time but quickly move away from you. You are realizing that you are different and you aren’t really sure what to do about it.
So today you cling tightly to what you know. You want to bake with me more. You want to read out loud with mama. You want to do all of the things that comfort you when your whole world is out-of-place. You want to do what makes you feel normal.
That feeling alone reminds me that you aren’t really all that different. When I’ve had a bad day I want the comfortable too. I think we all do.
Cure sometimes, treat often, comfort always.
We continue to move forward. Together as a family. Learning right along with you. Figuring out the ups and the downs. We will continue to laugh together and cry together. In the end we will survive and you will be all the better for it.