The 11th

I don’t actually watch a ton of TV, but when I find a show I like, I binge watch it. I am always behind the curve. I hear people at work, talking about these shows and by the time I get around to them, the time to share our watching experience has passed. Nonetheless, I have gotten into The Great British Baking Show. What I love about it, is a lot of things! The most awesome one is that it is something that we can watch as a family. Mathew really loves cooking, so shows like this and Nailed It!, are the shows that he really enjoys. I keep trying to convince Luke that he has to pay attention so he can make me these things when I am older lol

The kids movies that are in rotation at this time in our lives are: Despicable Me 3, Cars 3, and Finding Dory. I am all for honoring the choices that the guys make, but there are only so many times I can watch a movie a million times. Thank goodness for Netflix!  If you ask me what is actually on cable, I could not even begin to tell you. I don’t feel bad about that.

The last couple of days have been different, to say the least. I may have to take a break from this for another day or two. I need some time to reset and recharge. See you around.

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Fragile X

I want to try to dedicate some of my days to Fragile X awareness. It is a fascinating genetic condition that not enough people know about. All of the information I will share with you here will be either from personal experience or directly https://fragilex.org/

I will focus on the information about males, since I have two guys, but is also occurs in females! I also want to distinguish for you how Fragile X impacts each of my guys. I am going to BOLD information if it shows up for BOTH of my guys, I will Italicize anything that shows up specifically for Luke and I will Underline anything that shows up specifically for Mat. If I do not identify it, it doesn’t show up in our lives…yet.

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FRAGILE X SYNDROME

Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity. Life expectancy is not affected in people with FXS because there are usually no life-threatening health concerns associated with the condition.

Features of Fragile X Syndrome in Males

  • Behavioral characteristics can include ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression.
  • The majority of males with Fragile X syndrome demonstrate significant intellectual disability. Disabilities in FXS include a range from moderate learning disabilities to more severe intellectual disabilities.
  • Physical features may include large ears, long face, soft skin and large testicles (called “macroorchidism”) in post-pubertal males. Connective tissue problems may include ear infections, flat feet, high arched palate, double-jointed fingers and hyper-flexible joints.
  • No one individual will have all the features of FXS, and some features, such as a long face and macroorchidism, are more common after puberty.
  • They are also very social and friendly, have excellent imitation skills, have a strong visual memory/long term memory, like to help others, are nice, thoughtful people and have a wonderful sense of humor.

Autism Spectrum Disorder and Fragile X Syndrome

FRAGILE X SYNDROME IS THE MOST COMMON KNOWN SINGLE GENE CAUSE OF ASD

Autism spectrum disorder (ASD) is a behavioral diagnosis. The range of symptoms in ASD vary and are generally characterized by an impaired ability to communicate and interact socially with other people. Sometimes children will not meet the diagnostic criteria for ASD but will have autistic-like features.The diagnosis of ASD is usually made by a developmental or general pediatrician, neurologist, psychologist, psychiatrist, or other specialist. A clinician may make a diagnosis of ASD after observing the behavior and language of a child and using the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria for their evaluation. In addition, the diagnosis may be made after evaluating the child using a number of testing instruments, such as the Autism Diagnostic Observation Schedule – 2nd edition (ADOS-2) or the Autism Diagnostic Interview – Revised (ADI-R). These instruments are considered the gold standard – the most accurate instruments available – for a diagnosis and are often used in research.There is no blood test for ASD, and imaging studies such as MRIs don’t diagnose the condition – it is purely a behavioral diagnosis similar to Attention Deficit Hyperactivity Disorder (ADHD).

Whereas ASD is a behavioral diagnosis, FXS is a medical, or more accurately, a genetic diagnosis. When associated with FXS, ASD is caused by the genetic change or mutation in the Fragile X gene. If a child is diagnosed with ASD and then diagnosed with FXS, he or she still has ASD, it is just that the cause of their ASD is known. It is no different than someone with FXS also having ADHD or any other behavioral symptom of FXS.

The article FXS and ASD: Similar But Different highlights a well-attended panel discussion at the 13th International Fragile X Conference that addresses the topic: FXS and ASD: Clinical Insights into the Similarities and Differences for Diagnosis and Treatment.

Many studies have evaluated the FXS-ASD link over the past decade. Since many children with FXS are interested in social interactions, they may not meet the diagnostic criteria for ASD, even though they exhibit some features of ASD such as poor eye contact, shyness, social anxiety, hand-flapping and sensory issues. Autism is much more common in boys with FXS than in girls with FXS. According to the CDC, a national parent survey found that 46 percent of males and 16 percent of females with FXS have been diagnosed or treated for ASD. The FORWARD Registry and Database tells us that 40 percent of individuals with FXS are diagnosed with ASD by their doctor in the clinics of the Fragile X Clinical and Research Consortium (FXCRC)

Studies show that individuals with FXS who have autism can have a more significant intellectual disability (lower IQ) than those with FXS who do not have autism.

For further reading on the relationship between autism and Fragile X syndrome, see:

About 10 percent of children with ASD are identified as having another genetic and chromosomal disorder, such as Fragile X syndrome. Given the possibility of a link, it is recommended that all children with ASD, both male and female, be referred for genetic evaluation and testing for FXS and any other genetic cause of ASD.

Clinical Insights into the Similarities and Differences for Diagnosis and Treatment

While it has long been known that individuals with Fragile X syndrome (FXS) often exhibit characteristics of autism spectrum disorder (ASD), only recently has the possibility been raised that the two conditions may have considerably more overlap than previously thought. Scientists at various Fragile X (FX) centers are studying whether this overlap may extend beyond mere behavioral similarities and perhaps include genetic or biological components as well. That research may prove to have far-reaching effects.

Meanwhile, parents, educators and clinicians in the FX field have continued to note the similarities and differences between the two conditions so they can plan appropriate interventions based on the specific characteristics and needs of each individual. It was in that spirit that a well-attended panel discussion at the 13th International Fragile X Conference in Miami pondered the topic: FXS and ASD: Clinical Insights into the Similarities and Differences for Diagnosis and Treatment.

The discussion provided clinical perspectives on the behavioral differences between FXS and what are thought to be core features of ASD. There is still much to be learned about identifying behaviors that suggest the presence or absence of ASD in FXS.

As the science advances, researchers and clinicians will achieve a deeper understanding of the overlap between the two conditions, and how that overlap affects both of them. Moderator Vicki Sudhalter, PhD, led a distinguished panel of clinicians that included Tracy Stackhouse, MA/OTR, Sarah Scharfenaker, MA-CCC-SLP, Walter Kaufman, MD, and Richard Belser, PhD. Here are the key points that came out of the panel discussion:

  • Fragile X syndrome causes a range of functioning across domains. It is a specific, identifiable condition with a known genetic cause. Autism spectrum disorder is identified by a cluster of symptoms rather than a specific condition, and is believed to have many causes, most of them unknown. There is overlap, in that some individuals with FXS have ASD, and some do not, though FXS is known to be the leading known single gene cause of ASD.
  • Clinicians must understand the differences between the two conditions in order to avoid misdiagnosis and improper treatment. Likewise, clinicians must appreciate the similarities. Harnessing what is known about ASD in particular, given its larger cache of treatment strategies, can help advance treatment and educational plans as appropriate.
  • The core deficit in ASD is social interaction. The core deficit in FXS is intellectual function and hyperarousal/anxiety. A key point related to these differences: People with FXS tend to be deeply desirous of human interaction, but the social anxiety that also typifies the condition often causes them to act otherwise, which prevents success. People with ASD are largely unaware of the function others serve in relation to themselves, hence they rarely seek social interaction.
  • Eye contact is a key element of social interaction, and though “poor” eye contact is symptomatic of both FXS and ASD, the type of eye contact is substantially different. People with FXS tend to avoid eye contact, looking off in another direction to cope with their social anxiety, while people with ASD are unaware of why they should use eye contact as a source of information or interaction. Insisting on eye contact with those who have FXS is most always counterproductive, leading to greatly heightened anxiety.
  • Even when avoiding eye contact, people with FXS tend to be acutely aware of their surroundings. Like a good politician or salesperson, a person with FXS can read a room effectively, accurately gauging others’ moods and anxiety levels. They long to participate, to joke and be joked with. They want to be inside a social circle-but they typically need a great deal of acceptance, invitation and training to be successful at it. In contrast, people with ASD more often really do want to be left alone.
  • Imitation is generally a strength for those with FXS and not often seen in people with ASD. If imitation is not seen in those with FXS, it should be an impetus to conduct additional testing and treatment plans.
  • Teachers and caregivers often say they don’t need to know about FXS because they have previously had children with ASD in their classes or homes. But interventions appropriate for children with FXS may be quite different from those appropriate for children with ASD. For example, a shaping procedure is often used to increase eye contact in children with ASD. In contrast, our experience with children with FXS has shown us that working to increase eye contact in this population can be counterproductive.
  • Both FXS and ASD are typified by repetitive behaviors, but in FXS, this is most commonly manifested as hand-flapping and body-stiffening. Those with FXS tend to exhibit repetitive behaviors due to excitement, anxiety, or difficulty “stopping” or inhibiting their behavior. People with ASD engage in those behaviors as well, but for more varied reasons.
  • At base, most FXS behavioral issues are traceable to the twin challenges of managing anxiety and hyperarousal. Autism spectrum disorder is more complex and multi-faceted in its behavioral roots and manifestations, thereby making it essential to delineate the function of the behavior before formulating a treatment plan.
  • The crucial point for teachers, therapists and others involved in the care of those with FXS is not to lump them in with ASD as more or less a common diagnosis requiring a common set of interventions. Fragile X syndrome is still best treated utilizing what is known specifically about the condition.

 

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We rescue cats, but did you also know we run a slaughter house?

That is a joke…but not really. So, I will talk a little bit about the cats that have been in our lives. When I adopted Luke, I had just one cat, her name was Diesel. She was an all grey, long-haired beauty. I may have spoken about her last year. Luke loved Diesel so much! She lived to see us move where we are now. That is a feat in itself. We moved a lot before rooting here. Diesel went out one night and never came back. It was a while before I got a new cat and because I am a sucker for animals, I managed to come home with three. I was specifically looking for kitties that would hunt! I have never had an indoor cat and I do not believe that cats should be kept indoors. Many people disagree, but that is the beauty of opinions. I feel like cats get to live a rich, full life when they get to experience the world. There are the risks, but I feel like they outweigh the pros.

Back to the three cats that I came home with: I went to a local cat shelter, Animalkind, with one cat in mind. He was found as a stray and was super feral. I got talked into the other two(it wasn’t that difficult). They were both indoor/outdoor cats and I was very excited for all the hunting they would do! The super feral one I named Geordi and the other two were Meatball and Singer. I adopted them all in June and Meatball and Singer made it to October before they passed. Geordi managed to make it until this past October, I miss that feral snuggle bug.

After Geordi passed, I waited until December to go back to Animalkind and pick out a new cat(or two) 😉 When Max and I got together she had two cats, so that was a full house. One of her cats didn’t make it very long out here in the wild country, she was used to the city and the luxuries of indoor city life. The other is still with us, Max-Cat as he is affectionately called, has adjusted quite well to the country life. So, Max-Cat was solo for a bit and it was decided that he needed a friend. Enter Saber Tooth Tiger and Pickly Pear Bear. These girls are not hunters lol They are basically spoiled ladies that yell all day that they haven’t been fed enough or that they need their pillows fluffed. In the meantime, we saw a post on Steve Capporizzos Pet Connection, that there was an old lady persian in need of a home. I have wanted a persian my whole life! Her adoption fee was covered and we went to fill out an app and she was mine! Her name is Derby One Knerby, or Derbs for short and she fits right in with our spoiled ladies. We are at Catpacity…which means, no more cats.

I am sure at this point, you are wondering, what about the slaughterhouse?!?!?! So, having an old house it is good to have a mouser cat to make sure that chipmunks arent messing with the foundation and the mice aren’t messing about in the basement. Having Diesel was great, she was an excellent mouser and I used to joke that she was going to bring home a small baby one day. She caught it all! Bluejays, chimpmunks, squirrels, mice, moles, you name it! After Diesel, it went downhill. My super feral, Geordi, ended up being a snuggle face. He did manage to kill a baby mouse in the house once and for that, I was grateful. *During the renovation, I think a few mice got more access to the kitchen than they had had before* Meatball and Singer literally killed nothing, they did beat the record for most naps though! Saber Tooth Tiger, Derbs and Pickle; they are all hoping to beat the record set by their predecessors. But, Max-Cat…Max-Cat…the indoor city cat who had never been outdoors in his little life. He is the best hunter I have EVER met.

Max-Cat wasn’t sure about being outside in the beginning. It was all new and he was nervous. We don’t kick the cats out, we do give them a choice. Max-Cat did spend the first several months inside and once the weather warmed up he was out! One day I came home and there was a baby mole on the deck. I actually thought that Derbs got that one, so yay(she didn’t). The next day, there was a chipmunk, whoa! The next day there was a chimpmunk and a mole. The next day, a chimpmunk and a mouse. I could keep repeating the gifts that are left on the deck each day. Max-Cat is literally killing everything. He has killed all the mice, moles and chipmunks in our yard, so he has expanded to across the street. I think he got all the rodents across the street, so now he is across the street diagonally, killing all the rodents in my neighbors barn. Just tonight, I was walking the dogs and Max-Car was chasing two rabbits. I chuckled that he was getting ambitious, but when I got home from walking the dogs, there was a dead adolescent bunny on the back deck!

I have to admit, I was really excited in the beginning, but now it is getting out of control. There are between 2-4 dead animals on our back deck every single day. The bunny made me quite sad this evening. I know that he is doing what cats do, but Max-Cat, take a break! There have been 3 birds, a million chipmunks, several dozen moles, very few mice(which I am not sure how to feel about that), and a bunny tonight. The worst part about this mass slaughterhouse we have going on is that the dogs try to eat the dead critters. Jude had the whole bunny in his mouth tonight. Butch fought me for a mouse…those are the only two that have been caught, but egh. Stop killing and stop eating the killings!

Never a dull moment in our house!

Busy! Barely enough time to eat!

People reading this: I am exhausted. I am drained physically, emotionally, spiritually, and all the -allys that could be drained. By some miracle, I was able to sleep in a little this morning. But, as soon as my feet hit the floor, I was on the go! Today I was able to clean the kitchen, went to the laundromat, cleaned out my car, went to the dump, took the guys out for lunch, picked up rabbit and cat food, picked up some clothes for my guys, went to Target and got cleaning stuff and ice cream. Got home after all of that and I mowed the lawn and weeded a little. I was able to jump in the shower, made Mat and I some dinner, ran to the store for chocolate cake(they didn’t have any), took the dogs for a walk and now I am just getting to this. As I look at this list, it doesn’t seem like all that much, but when you live in the middle of no where and in between this time you have to make sure that the kids are fed and watered, animals are fed and watered and bully Max to drink more liquids so she can make a full recover, it is a lot!

It isn’t always like this, these things do need to get done, but it can be more relaxing. With Max recuperating from her surgery, I am functioning as a solo human and it was really nice to spend extra time with my guys. Usually, we divide and conquer to get things done, and that can be more efficient. I really enjoyed my time with my kids today. I know I say it all the time, but they are really awesome kids! Mathew helped me make a grocery list for tomorrow. We are waiting for our Sunday paper to get the best deals. Mathew loves reading the newspaper; he tells me the weather for the week and if there is a lot going on in the sports section, he lets me know. I look forward to Sunday mornings.

For dinner tonight, I made us caesar salads with grilled portobello mushrooms, avocados and parmesan cheese. It was delicious. Mat loves salads. That fills me with glee, because I also enjoy a good salad. I am grateful that I do not have to cater to any weird food issues these guys have. They have preferences for sure, but they eat everything. IMG-1684.JPG

Mat is sitting here with me and we are watching Star Trek TNG. He still loves this show and so do I. He is giving me advice about what to write here, he told me the salad picture looks great. He is also telling me I look tired and should go to bed lol this kid. He looks just as tired! He keeps exaggerating his yawns..I just asked him if he wanted to go to bed and he said ‘yea’, followed by another exaggerated yawn HAHAHAHA I love him. Luke was asleep on the couch when I came in from mowing the lawn. He does a great job of listening to his body and just going with it. He will sometime take an entire day just to reset. I can appreciate that.

My shower today was the first I had been able to squeeze in since getting my hair cut and it is growing on me lol I always hate drastic hair cuts the first 24 hours and then I just go with it. I feel like it makes me look like I am 12 years old, but it will grow in nicely and I love how light it feels in this summer heat. I give you an obligatory bathroom selfie (oh right, not a dating site lol) and another for the full effect.

Yes, my shirt says “Cluck” Norris.

I bid you goodnight. I have to try to shop for a new wood stove tomorrow to take advantage of the rebate that MA is offering. I would also like to be rested in hopes that I can go have fun with my guys too.

Peace. Love. Hugs.

Sweatshirts, haircuts and comfort

I have all the windows open and it is actually chilly, so I am wearing a sweatshirt! It is one of the best feelings in the world. I chopped off all of my hair this morning. As I was getting my haircut this morning I thought of my guys and trying to get their hair cut. For as long as I can remember, I would buzz cut their hair. I have given them each a pretty sweet mohawk a time or two. But, cutting their hair is not my favorite thing and they really should get used to having their hair cut by other people. I have tried many a time to convince my Mom that they should have a haircut while they were with her for a weekend or something. She has been quite successful in this area. Thank you, Mom. Before summer started, there was actually a Sunday that we found success at the Super Cuts. On a whim, we drove down there and struck gold; there was no one there, each of the guys had their own stylist, the stylists were both amazing! Mathew cannot have scissors near his heard, so just buzzers. Luke was able to get more of a ‘style’ because he was alright with the scissors. Their ability to be comfortable with new things is every evolving and I dig it.

As I think about our vulnerabilities and being comfortable with different things, I think about Mathew falling asleep in the car. For many years, he would keep himself awake, no matter how tired he was. I assume that he didn’t feel safe to fall asleep…as this year has gone on, there are weeks at a time where he would fall asleep as soon as I picked him up. When we went camping, he did take a small nap. It just makes me feel so happy that he feels so safe. He has grown up to be more comfortable in his skin and who he is, as an almost 16-year-old!

The cool weather is calling me to my comfy bed. I will make up for these short posts this weekend. Sleep well everyone that is out of this heat wave!!

 

Cheers!

I want to write a book about country music and how I think it is a game changer for kids with speech issues

Today is supposed to be the last day of this heat wave and I could not be more happy. Between the heat and taking care of everything at home I am feeling wiped. I really needed to talk about something positive. I must have been throwing my funky energy out into the universe today because I got to work and there were flowers on my desk! With a little note reminding me that all women deserve flowers! I was beyond happy and potentially had a little cry. Thank you, friend. Thank you.

There have to be studies done around this idea! I spoke a little bit about my guys singing, but as this year has passed and I have committed to listening to country music at all times, their speech has increased! In the beginning of my time with Luke, I listened to country music randomly. The favorite was Jerrod Niemann’s Lover, Lover. Listening to Luke sing that song makes my heart fly. Luke wasn’t super verbal when I adopted him, but as time has passed, his language has exploded!

Adopt Mathew! My baby boy, supremely limited language, communication device even! I do remember he liked a Rhianna song, that I cannot for the life of me remember the name. Even today, if you do not spend a lot of time with him, it can be difficult to understand his speech.

Once I committed to country music, the amount of language these guys are producing is astounding! As you may know, listening to a country radio station is like listening to any radio station; they play the same handful of songs over and over and over and over again. It is impossible not to know all of the words to all of the songs in one week ha! What is really interesting with country music is that they are actually just talking. They talk and they say the same three lines over and over again. Luke Bryan is a great example of this. In almost all of his songs, he has a three-line/word theme. The newest summer song is Sunrise, Sunburn, Sunset(repeat and repeat and repeat…he even says the word repeat in the song baaahahaha). With the slow, catchy melodies and the repeat of so many songs, it makes it easy to learn the words. Scotty McCreery has a song Five More Minutes…the first time I heard Mathew belt it out, I cried.

In the last year, my guys have the popular country music down. I want desperately to bring them to a country concert. I think it would blow their minds. We attempted to go to countryfest last year, and that was a complete failure. It is still something I am going to make happen! But, driving in a car with them is the most wonderful experience. Not only have I told you how great they are in the car, but when they are both singing it is awesome! Morgan Wallen and FGL have a song called Up Down and that one makes me chuckle because it is one that you can sing randomly throughout the day. Both of my guys sing that song.

If you think about it and are a little creative, country music can serve as a teaching tool for kids of all kinds and for kids with language delays, it can change the game. I am confident that because we listen to country music my guys have improved their language. It is also completely ‘cool’ and ‘popular’ in todays society, so we aren’t doing anything that would make us ‘stick out’ anymore than we do. I just really feel that it is an untapped resource for families and even schools. Music in itself is profoundly impactful for all walks of life. For goodness sakes, there are music therapists in this world, amazing ones, I might add! But, I haven’t heard enough praise for country music.

Listening to country music has also expanded my appreciation for many things. The majority of country artists are so gracious, humble and generous. Garth Brooks and his wife are a prime example of this. They are thankful for fans, thankful for opportunities, thankful to live the life they do and they share that thanks. The radio station we listen to is out of Albany, 107.7 WGNA. My guys know the jingles, they know the DJ’s. Mathew will even watch the screen(in these new fangdangled cars there are touch screens that show the name of the song and artist) for which song is playing(reading!!!!). It feels like home. We have been living here long enough that the radio station is familiar. That may seem silly, but it is quite comforting to me.

In closing, country music is pretty awesome because my kids sing. Listening to Luke sing in his soft, beautiful, peaceful voice and Mathew belting out the lyrics he does know, in a way that only Mathew can…these are the small things in life that bring me a ridiculous amount of joy.

I will leave you with a few lines from Kenny Chesneys Everything’s Gonna Be Alright. (I do this to emphasis the repetitive nature, the fact that my guys can sing this song and the knowledge that everything’s gonna be alright).

Everything’s gonna be alright
Everything’s gonna be alright
And nobody’s gotta worry ’bout nothing
Don’t go hitting that panic button
It ain’t near as bad as you think
Everything’s gonna be alright
Alright (is gonna be alright), alright (is gonna be alright)
Everything’s gonna be alright
Alright (is gonna be alright), alright (is gonna be alright)
(Everything’s gonna be alright)
(Is gonna be alright, is gonna be alright)
(Everything’s gonna be alright)
(Is gonna be alright, is gonna be alright)

Happy 4th of July!

Since moving out here, we have celebrated the 4th at the Pittsfield Parade! This year, we sadly did not make it. This heat wave is making things a little more difficult. The heat really impacts people in different ways. I usually get a migraine and am out for the count. Luke’s entire body just shuts down, he doesn’t eat or drink much at all and he just sleeps it off. If I do push liquids, he ends up throwing up 😦 He has the AC in his room, so I am not worried about him. Mathew actually handles it like a champ. It is a bummer because AC makes me feel sick and I think it does the same to Mat. Rolling with it.

Having to figure out when my kids aren’t feeling well takes some serious detective work, there is also the intuition part and just having known them for as long as they have been with me. I am not a fan of medicine or running to the pharmacy if anyone has the sniffles. I like to support the body in letting things run their course because the body really does know how to heal itself. Between kids and animals and a really old house, we are probably in a petri dish of germs, but we are also pretty darn healthy. I have literally NEVER purchased hand sanitizer. If I had a penny for every time one of my guys put something in their mouths I would be beyond rich. Reality for me, I will not be able to catch it every time. I am not a ‘helicopter’ mom.

We all have allergies and we do take a multi, so Mathew knows what pills he takes and why he takes them. Luke, bless him, just trusts that what I give him is what he needs. Mathew will be able to take care of his own supplements some day, but Luke will still need support in that area. If Mat has a headache, he has gotten better at asking for a pill or knowing what his body needs. We do a lot of fluids, rest and a tylenol from time to time, but that is really it. Knock on wood, we are healthy and we have been very blessed with such good health.

Rest is an amazing tool at letting the body heal. I must give credit to my current job. I have never felt so supported to take care of myself or my family than I do there. The idea of self-care was so foreign and even now, I sometimes forget just how important it is. It is time for bed now. I am wiped and have to prepare for the rest of the week!

Hope you had a safe, lovely day!

Max

maxnmeMax has been in our lives for over a year. She is the woman who encouraged this blog last year and has taught me many, many things about technology that I probably wouldn’t have really cared to learn. I am even on Instagram!! ourfurrytribe check it out!! It is odd because this technology is not where my heart is, but sadly it is the only way that I can keep up with friends and family. There are no more phone calls, no more texts, no more hanging out with anyone…it makes me really sad. I am equally to blame in this sense, it is just not a strength of mine, so I am sorry for my end. I was actually considering taking a break from fb again, as it is just not serving me and sucking up too much of my time. But then I think of all the dogs we are fostering and I don’t know if I could…egh. I digress.

Max actually had her tonsils removed today. As a lady pushing 40 years old, that is no small feat. She is doing really well. Amazing doctor. Her Mom and I were with her when she woke up and her Mom brought a whole cooler full of popsicles. Moms ❤ She is resting now.

maxtonsils.jpg*she may kill me for this picture*

Max has been the healthiest relationship I have had the privilege of experiencing since moving back to MA. We both met one another after life threw us some curve balls, better preparing us for the next time around. It started off as most relationships do, full love psychosis, getting to know each other and being excited about every little thing! She doesn’t have a drinking problem or drug problem: WIN. She is present and attentive, loving and caring. We have done many, many fun things together. I didn’t even realize I had a ‘bucket list’, until I met Max…but I do, and together we have crossed off so many things on that list! Max had never dated anyone with children and never wanted children of her own. She admittedly doesn’t particularly care for children lol I think last years blog was a different way to have someone get to know me and my children and our life. So, she knew a lot of what she was getting into and some that she didn’t.

Max has been really great with my guys. Max’s parents have also been so incredible. This is the first relationship where I have not felt judged for having my children. I really think that Max’s parents genuinely like my kids and do not think of them as less. I actually think they approve of our relationship and I have never gotten the feeling that Max’s parents were concerned about how rough Max’s life would be if she stayed in this relationship. It is a learning curve all around, but everyone has taken it in stride. I hope Max’s parents know just how much it means to me to have that feeling of complete acceptance with my kids. Thank you.

It has been an experience learning how much of my time and attention goes to my children and how much time and attention is involved in maintaining a relationship. I do not know how to balance this. But, if I am being honest, there is a part of me that doesn’t want to balance it. My life is my children and I am happy in this life. I do not need a relationship to feel whole or complete. I am complete. My family is complete. I said to Max from the beginning that I wasn’t going to ‘work’ on our relationship. It was going to happen or it was not, but I was not going to work at it to make it happen. Now that we are out of our love psychosis stage we are learning together. We have different love languages, our astrological signs are funny together(me: virgo, Max: scorpio), and we are in the down and dirty of a life together. I have realized that I require much more space to myself than I had ever even considered. That in itself is a challenge when you live with someone lol

I think it is safe to say that we have both learned a great deal about ourselves and about one another. We work well together when we have a plan. Max has been completely dedicated to fostering dogs with me and completely supportive of my animal hording(drawing lines where they are needed). With her support and guidance, this house has become more of a home. There are curtains in windows, thoughtful furniture and rugs around, organization and upkeep of everything…she even cultivated a tiny garden!gardenMax has been committed to watching the guys when I am at my Yoga Teacher Training and she feels comfortable bringing them to fun things and actually getting out of the house to do stuff.

Max is the reason that we did Bob’s Burgers night for so long! Now that there is a grill, I think we will get it back going again. We still have many more burgers to make! She has the patience of a saint when it comes to me and my guys. I don’t know where she gets it, but she takes each day like a champ.bobsburgers Max is to credit for me running my first 5k and my first 10k!running I mean, the reality is I could go on and on. I am so grateful to have met her and to have her in my life and my guys life. Who knows where this life with take us? We are taking it one day at a time with care and support of ourselves and each other.

It is fascinating to me how people come into our lives and leave their imprint. Even when life has been really rough and I have been with people, or in situations that have not been ideal, I have LEARNED. Looking back on my history of failed relationships has shown me that they have failed, in great part, because of me. Funny/not funny, I have seen a therapist since I was 12? Off/On, different people depending where I was living and I have taken things away from each experience…some worthwhile and some not. I started seeing someone locally two years ago and this therapist has been incredible. She pushes me when I need it and doesn’t put up with my crap when I try to pull it. I have put so much work into myself with her and continue to. Sometimes we see one another once every other month and sometimes it is once every two weeks.

At the end of the day, I am a stubborn jerk sometimes. These past two years have softened me, just a little. I feel different. I feel softer(physically and otherwise HAHA). I am willing to put the work into myself, because, at the end of the day, I am the only person that is responsible for my feelings, actions and thoughts. My relationship with Max has also shown me that my kids are even more in-tune to me and to our family than I thought they were. I knew they were in-tune to everything, but I wasn’t so sure of the depth. All around, I am super thankful for Max and what she has brought to the table. Thank you, Sutfin, from the bottom of my cold dead heart xoxo the guys thank you too!maxlove

I push my kids

In preparation for this blog, I asked people what they would like to know? What could I share? Am I answering questions that people might have? Will people agree or disagree with me? My Mom came up with the idea for today’s entry and I am excited to talk about it.
Let’s start with camping: This last weekend, we left the house at 10:30am on Thursday. Before leaving, we still had to pack and get some things in order, make sure the animals were all set, make sure everything was shut off, etc. We barely had time for vitamins, nevermind breakfast! Out the door, the guys are squished in the back with all their pillows and clothes and such. I am driving, anxiety at an all time high because I have only had too much coffee. My mind is racing: what did I forget??? Did I shut this off? Did I feed the rabbit? Do the chickens have clean water? Did I leave the dishwasher full or empty? I have to mow the lawn!
I know we are headed to Long Island and I hate driving through cities or really, any place that is heavily populated. My kids are happy as can be in the back, enjoying the ride. Listening to country music and singing along. We eventually do stop to get gas and go to the bathroom and grab some food, because Mathew has reminded me that he is STARVING. We do the things we need to do, it is really warm and we all pile back into the car to keep going. Mathew tells me if he sees deer, points out things that he thinks I should notice. Luke just hangs out, he took a nap for part of the trip, but mostly he is a silent observer of life. These guys are incredible travel mates and I still cannot believe how lucky I am to be their Mom. I get lost in the Bronx, we sit through way more traffic than my anxiety can handle, but we arrive. The drive that was supposed to take 4 hours, took a solid 6. Thankfully, my Mom had already arrived(she took the ferry…don’t worry, we took the ferry home lol) and she already checked out where everything was: the beach, the bathrooms, the water source, everything! So, we just get out of the car and both of my kids help unload the car, we figure out tent situations(rule #54232 no more than 2 tents per site). We all go to the bathroom and just like that, my kids know where to go. We walk down to the beach to check it out and we get ready for dinner.
Now, full disclosure, when we had been camping previously, Luke had always slept in the car. Reason being, he is up at an ungodly time in the morning and I didn’t think that was fair to all the other campers. This trip, Luke slept in the tent! He did so well and I was beyond proud. He was awake, but stayed quiet until a reasonable time.
My guys know the drill with camping; they each have their own sleeping bags, they bring their pillows and anything else they deem special enough for the trip and they know there is no TV, no electronics, just us, a camp fire(rule #65708543 no open fire pits, unless you rent one from them and buy the wood from them), a picnic table, maybe a deck of cards/dominos and books. They are fine with this. Luke loves to walk around and check out the campground/campers. Luke loves to see what other people are doing! He is without a doubt, my explorer. Mathew wants to help with dishes, fill up water bottles, play ball(forgot that I bought him a football this trip), play cards and prep food. They are just themselves. Sure, Luke was standing in the sun before 7am, reciting Jack Skellington lines from the Nightmare Before Christmas at the top of his lungs to his shadow and Mathew was running around yelling this or that, which means nothing unless you know him. But, I will never make an excuse for my kids. I will apologize for the volume, but not always. I want them to know that they can be exactly who they are and exactly who they are is incredible. I spend so much of my life apologizing for my inadequacies, but I never want them to do that, or feel shame for simply being.
*We did return on Sunday via ferry and everyone had a great time.*
I feel so strongly that they get to experience everything this life has to offer. This comes with some ups and downs. My Mom loves to share the story of the water slides, on the cruise ship, when we went on our Disney cruise two years ago. If you haven’t been on a cruise ship before, you must have seen pictures! It is essentially a town on the water with any and everything a kid would want on it. There was a huge water slide that you would jump on a tube and take down. You could go by yourself or with a friend. My guys had been eyeballing that thing from the moment we stepped on the ship. Anywhere you walked, people were swishing above you in a tube. I don’t remember what day, but we decided to do it. My Mom agreed that she would go with Mathew and I would go with Luke. I chose Luke, because I knew he would freak out and probably bite/scratch me(didn’t want to subject poor Grams to that treatment). If I remember correctly, we are in a long line and as we are getting closer Mathew is saying he has to go to the bathroom(that is typically his OUT), I tell him he can go when he gets done. Mat goes first, he actually gets in the tube with my Mom with no issue and it isn’t until it moves that he freaks out. Of course, Luke and I go shortly after and he starts freaking out right away. Yelling and scratching and crying, going on like I am trying to kill him. The woman who was working the rafts was incredible and she took my cues(which rarely/never happens) and I strong armed Luke into the tube and we were off! I was going down with Luke and he was screaming(half happy/half terrified) and the whole way I was thinking, “I bet Mathew loved this and will already be in line again!”. Luke and I get to the bottom and my Mom and Mat are there waiting for us. Luke gets out of the tube and yells, “AGAIN!” WHAT!?!?!? Lol Mathew decided that once was more than enough for him, but I was pumped that he did it. At least he did it! It was totally fine that he didn’t want to go again, if anything, I think it gave him the courage to try the kids water slide, with no tubes, that we couldn’t get him off the rest of the cruise haha! Luke and I enjoyed the water slide several more times during that trip and each time we would get to the end he always wanted to go again. Best part, Luke won an award for Bravest Aquaduck Rider lol
tubeaward.jpg On our last night, the wonderful woman, Rowena, who was working the raft came to our cabin and presented Luke with this award. She was so proud of him and it made her week that he was so brave/happy.
I like to remember the time when my Mom and I brought Luke, Mathew and Dom(our weekend foster-brother/son) to Ramblewild to do the ropes course. This was an event put on by the Boys and Girls Club and so they closed down for 1/2 the day to cater to kids with special needs. I love when these things happen. I found out that the owner of Ramblewild has a son with special needs, so good humans all around. This one, I thought for sure that Mathew was going to be a bit of a stinker about. He woke up with that crazy look in his eyes and of course it was myself and my Mother with 3 kids. Amazingly, Mathew did really, really well. Luke and Dom did great too. This trip there were definitely some tears and we had to work through some stuff. But, we all made it out in one piece. I am grateful that it was for special needs kids. Had we gone any other day, I think things might have gone a little differently.
My Mom has seen the looks and heard people make comments about how could I make my kids do something like that?? If either of my children cry, it as though the world stops for anyone around them, excluding my Mom and myself ha! At this time in my life, I think I know my kids pretty well. Sometimes they surprise me, but in the end I do know that they are both adventurers. They love to travel, they love to feel the wind blowing through their hair and they are always up for the next thing their crazy Mother/crazy Grams throws their way. I think the most important piece to this is that they trust me and Grams unconditionally. They know that I would never have them do anything that I was not willing to do myself. Minus long car rides through cities and stupid amounts of people, I do not project my fear/anxiety/stress onto my kids. Mainly, because when we are doing these fun things, those feelings are not present in me, but also because I want them to feel whatever adventure feelings come to them!
My Mom will correct me, if I am wrong, but I think she wanted me to talk about this because so many people do not understand parenting styles or judge parenting that is not in line with their style. Don’t get me wrong, I have been known to put my judging eyes on from time to time. I also served as my Human Rights Coordinator at the school I worked at. There is a fine line. Had I not pushed my kids out of their comfort zones they would have missed out on an amazing experience(and Luke’s award!!). Mathew knows that it is not for him, and I will respect that, always. I have asked them both if they want to go back to Ramblewild and Mathew does…I cannot get a clear answer from Luke lol There is also a piece for me, as a single Mom, where I cannot always afford the things that are presented to us. Ramblewild was a free event for my guys. The cruise was a very generous gift. I will always try to accept a generous gift that is presented to my family and make the most of it. I feel strongly that kids need to try something, at least once, to experience it and decide if they like it or not. How would you know, if you never tried? I have learned that if I am open, more things present themselves. Take these moments and make them awesome!
I was reading back on what I wrote last year and one thing was very clear to me: I was in a very different space. I was hopeful and naive, open and confident, relaxed and able to let things go that would have previously driven me insane. I am still hopeful, open, and able to let a lot of things go that would have really bothered me. Things I thought that I was sure of, I am no longer sure of. As I sit here writing this, I have more questions than I do answers.
I love my Fragile X children more than ever and they have grown leaps and bounds since this time last year. They are growing into men that I am so proud of; compassionate, empathetic, caring, loving, nurturing, smart, clever, wonderful men that blow me away every single day. At the end of every blog, every fb post, every call, every text, every email, everything: we will always be a family. No matter where we go, what we do, we will do it together and we will grow and support and love one another through this journey called life.
I am my best human with these guys. I will say it until I die: they saved me. They continue to save me.
I love my Mom.

Is it really July already???

Happy July, folks! We are riding a heat wave like no other and just got back from our first of three camping trips this summer. This first stop was at Wildwood State Park in Long Island, NY. It was HUGE and there were many, many rules…some of which we followed and some of which we acknowledged. My Mom was able to join us on this trip and I am so happy she did. Not only did she provide the information we needed to make a long trip significantly shorter, but it was awesome to be able to share some time with my Mom. The beach was beautiful. I wish I made jewelry, because I would be a millionaire. The stones on this beach were unlike any I had ever seen; they were all breathtaking. We should have had beach shoes, because it was terrible on the feet and the bums. The water was freezing, but refreshing. I love going new places and this one was new and also the furthest away. We got to take the ferry home, which was a neat experience for all of us! It is really good to be home.

As some of you may know, we have been actively invested in fostering senior dogs and we added four chickens to the mix. This makes for a very, very busy life. Five dogs, four cats, four chickens and a bunny, but no one is counting haha!

In preparation for this blog, I actually made a list of things that I wanted to cover. My last entry, on my list, was 5/1/18. This means that the majority of things I will speak about are current and will catch you up on the last year of our lives. It is Fragile X awareness month, which you know I will share with you here. I would also be remiss in not mentioning all of the things that are happening in this world that we share. I will not be going into a ton of detail on each issue, but I know you feel what is happening in the world. I feel it. We feel it. I am in awe of my friends and family who are making a difference in their own lives and in their communities. One day at a time, one hour of each day and the minutes and seconds will add up to be something incredible. Hang on.

This past year has taken us on quite a journey and I am so excited to share it with you once more. Happy July! Happy Fragile X Awareness Month! I love you. I am so grateful that you are a part of our lives.

Here are a couple of photos from our trip: