Chaos and Calm

 The past several months have had us on a roller-coaster with our Matt.  The challenges that were so consuming and confusing started in Jan of last year and began to mellow ever so slightly mid-May. They have continued to improve with short periods of regression scattered throughout the past several months.  During that time, we have come to understand that this will be par for our course in life--that Matt will be challenging and have periods of profound psychiatric and behavioral struggles mixed in with periods where things will be calmer. 

During the worst of his behaviors and challenges, things in our home weren't manageable and we started to explore all sorts of options to get a break. None of them materialized which was devastating to us at the time (we felt so desperate and were hanging on by what felt like a fraying thread), but I can see now that there was Divine intervention in how things actually played out. 

One of the options we explored is called Enhanced Respite Services (through the state of WA) and it is basically a break for the family. Matt goes away for a month to a home that is run by the state and gives the family some time to regroup. The discussion about this started ages ago and after months of applications, conversations and overcoming different obstacles (a.k.a. his sleeping tent was considered a restraint), we finally were able to drop him off on Monday. 

The week leading up to Matt's "vacation" was rough--he has been engaging in a lovely (sarcasm intended) and very socially inappropriate behavior lately where he sticks his hands down his pants. Unsanitary at best, we have worked really hard to extinguish this behavior through therapy and redirection, but unsuccessfully. It doesn't seem to be attention seeking; in fact, it almost seems like a tic or a habit...like he can't help himself--his hand just goes there. To add insult to this, he decided it would be fun to start shredding his diaper while in there and I find parts and particles of his diaper all over the house and car. The worst is when he would have some time in the back row of the car (I have to put him there so he doesn't grab my hair and neck while I drive) and the back seat ends up looking like a snow-storm hit. Remember when you accidentally washed a diaper and opened up the machine in surprise? Yup--same story, back seat of my car. Since that isn't quite gross enough, he decided it might also be fun to start eating the insides of his urine-saturated diaper. I don't want to talk about it any more. 

To prevent this (because it became much more than a socially inappropriate behavior and reached the level of both disgusting and unhealthy), we started to use a wrestling singlet all the time. So little mister figured out a way to access his parts through the bottom of his shorts, pull his little man out to the side, and pee everywhere. So we put him in pants...and he gained access by going down the pants, up the singlet and little guy was released from diaper prison again and pee flowed freely. 

Dealing with all of this--the loads of laundry, the vacuuming, the disinfecting, the changes of clothes, the disruption to running errands at all--took its toll and I started counting down the days until I didn't have to deal with it any more. Enter Mamma Guilt (capitalized on purpose). In all of its amazing technicolor, I started to experience feelings of absolutely crushing guilt at the fact that I wanted my son out of the house. 

In the days leading up to our drive to Spokane, I was so emotional--partly because I was constantly frustrated with him, and partly because I would miss him desperately. It was as though he could sense this wrestle and while the behavior increased, so did the hugs and the intensity of them. I call them his "aggressive" hugs and I got so many of them. I would cry a lot that week when he would hold on to me extra tight and for a long time. 

Todd and I were both so conflicted dropping Matt off--we had no idea what to expect in terms of the facility, but I already knew I was going to love the people working there since we had talking on the phone and via Zoom. They were bright, energetic, delightful people that I instantly felt connected to.  The house exceeded our expectations and was so clean, comfortable, and located in a beautiful area with chickens and deer running through the yard when we pulled up. It eased our minds significantly, but we were still going to walk out the door and leave our little dude here. That's so hard to wrap you head around--how do you leave him behind? How is it even possible to let yourself do that?

We did manage to get in the car and drive home, totally confident in the people that were taking care of him, but feeling insecure about a few things: 1) what if I like having him gone a lot? 2) what if he's mad at us? 3) will we be ready for him when he comes back home? 4) what if I've been hiding behind Matt? What if this experience without him exposes things I don't like about myself? 

We both cried a lot. I cried while I said my prayers, pleading for my baby...cried myself to sleep that night. And then I woke up in the morning to a totally different life. I wasn't jarred awake by screaming noises when Matt got up. I didn't have to deal with anyone's bodily fluids, run extra loads of pee sheets, change anyones clothes a thousand times, prep every detail of the house to avoid a disaster before school. During the day, I wasn't scrambling to get things done in preparation for him to come home. I wasn't picking him up from school for therapy. So many little things that are part of my normal were able to fall out of my brain which simply left me with more mental space. I can't describe what that feels like. 

Am I a horrible person that I feel so relieved? Everyone would say no to my face, but there might be some judgements from those who say "I could never let anyone else take care of my child like that! I could never leave my flesh and blood in someone else's care." Me neither. This took an act of God. Mountains were moved, roads were paved, earthly angels intervened, and therapists validated. This is the right thing for our family right this minute. 

This was a big deal to me...to Todd...to our kids. It's only 30 days, but it is also the first 30 days in 15 years that we have ever experienced this kind of life. It's different. We talk to each other...a lot. When Matt gets back, we'll be better able to love him without resentment. It's a battle every single day. We were worn out. I'm excited to miss Matt for a minute. We all are. 

Miracles in the Middle

 I think I mentioned at the end of my last post that I literally felt like I needed to write about our experience, no matter how badly I didn't want to. I don't know how to describe it except to say that I felt like I was being driven to share--I couldn't focus on other things until I had written my thoughts down and posted them. The feeling I had was that there would be some resources that would emerge as I did so. I would be remiss if I didn't share the trail of miracles that have seen thus far. 

I say "thus far" because we are no where near the end of our journey. In fact, we are still smack in the middle of it. Things are still hard at home. Instead of unmanageable constantly, it's more episodic at this point. I've been playing this analysis over and over in my head, trying to figure out whether I have gotten better at dealing with and predicting Matt's behaviors or if they have genuinely become less constant. I am not totally sure. 

One thing I can say for ABSOLUTE sure is that this has felt less lonely since I have shared. We have had meals brought to us--no one knew that I was struggling to cook because Matt has thrown pots off the stove and grabbed hot food and shoved it in his mouth, or that I was struggling to eat because Matt would literally take the food off my plate or out of my hands and I would just give up. So meals have been not just one less logistic, but a sincere act of service that enables us to eat without as much stress. People have offered to take Matt on drives so that we can have a break. Friends have shown up to help me clean and to spend time with Matt. I have stood in awe as "my" amazing people have literally stepped into the middle of it with us rather than watching from the perimeter. I have been so inspired by their examples. 

Ok...so this is complicated, but beautiful. When I posted last, I was submitting applications to three or four different places and within 24 hours of posting, we had been rejected by all of them. HOWEVER, a friend of mine wrote me after reading my post and told me that her Dad was Chairman of the Board for Albertina Kerr (one of the places we applied) and she connected us. During our conversation, he was able to give me the "lay of the land" in this industry, describing the separation in services between psychiatric/mental health services and services for kids with developmental disabilities. (Mind you, the two very often overlap, but there is literally no one in the states of WA or OR that fills in that space. It has to do with funding--regular health insurance covers the mental health services while state insurance covers services under the developmental disabilities category). What this info did was reroute me completely--I was literally barking up the wrong tree. 

Shortly after being rejected (strong word, but I can't think of another) by HMHI, I ended up with a list of other places to check out. There are two places that were NOT residential schools (those need to be recommended and funded through the school district and are not considered until every option has been tried) that offer in-patient treatment for children with developmental disabilities experiencing psychiatric issues that also have behavior problems. Matt, I was told by each one, fit their profile. However, the process for applying is extensive and LONG....

I managed to get the applications for each submitted within days and we are currently still in a holding pattern. Through the process, I managed to connect with some amazing people at each location that I feel have my back--they are trying to get Matt's applications processed quickly and keeping me posted. My next giant concern was this--how the beef could we get him there? These places are across the country and we cannot fly with Matt. There is NO WAY. And you can't board a 130 lb 5'7" human onto a plane sedated--they might frown upon that a little. Just as we wrapped up the application process, an incredibly generous and fairly new friend of ours was talking to us about Matt and this plight...and he offered to fly us out on his private jet. WHAT?!? Literally every obstacle, at that point, had been removed as far as we are concerned. We might have instantly burst into tears when he made that offer. 

The other thing that happened when I posted is a bit more complicated to explain, but absolutely blew me away. I have a friend with a son who has special needs also. She has learned he has a genetic condition called ADNP and has been a research advocate, fundraiser, and community builder in that space for years. I've watched her educate on capital hill and raise money to learn about the possibility of things like gene-therapy to treat his condition. About a month before she saw my post which mentioned Matt's diagnosis of Phelan-McDermid syndrome, she had learned that ADNP, Angelmans and PMS share a genetic pathway, meaning that some of the treatments and research that applies to one could possibly apply to all. Thus, she has been diving in to learning about Phelan-McDermid and through that, connected with several experts and researchers. She connected me with the president of a foundation called Cure Shank (Matt's mutation is on the Shank 3 chromosome). She has a son with PMS who is in his 20's and has been researching the heck out of this, trying to better understand trends and patterns, what treatments do and don't work, etc. She was able to provide me with research about what medications may and may not work. Matt was on two that are known to have adverse effects on kids experiencing neuro-psychiatric issues in their teen years. WHAT?!? I also learned that what we were seeing may present like bi-polar disorder, but may have a different explanation. Most of all, the research validated the fact that this (Matt's crazy) is pretty common during the teen years in kiddos who have a mutation on the Shank 3 gene. That's helpful in that I know it is a known...but not helpful because it means we may have a few more years of this. Managing symptoms is our best bet. 

About 2 weeks into this whole process, I had this thought that I needed to reconnect with the developmental pediatrician that had encouraged us to do genetic testing in the first place. She is BRILLIANT and the only reason I had yet to reach out to her was financial--she doesn't bill insurance so we pay cash. But I couldn't shake the feeling that I needed to talk to her. I reached out and within a week, had an appointment. During our conversation, I learned that she had JUST connected (literally weeks before) with a person who does research around "normal" variants in genes and how the absorption of certain things (like folic acid) can be more difficult because of those variants. It led us to a conversation about expression of proteins on genes that have a mutation and how to increase the expression of those proteins through by giving kids more of the nutrients they are struggling to absorb. Not sure if that makes ANY sense...but basically what this means is that they are figuring out ways to take a sleeping part of a gene and tickle awake the part that needs to be expressed...not fully, but improving it in any small way could prove helpful in the reduction of symptoms related to that mutation. Gene therapy targets this more directly. 

Not only do we have new (totally harmless) things to try, but she also told me about one more in-patient treatment location on THIS SIDE of the country--Aurora Behavioral Health in AZ. The minute she told me about them, I got this feeling of excitement at the thought of him potentially going somewhere I could actually visit! My sister lives there! She could visit my Matt and give him all the hugs! And I could go and stay with her and see him instead of feeling like he was a world away. They called me twice yesterday and I know his application is in process--I got it submitted within 24 hours or learning about them. It was one of those moments where I just KNEW this is where I was being led. Who knows if it will play out, but I just had this feeling when we learned about them that this was another stepping stone in the right direction. 

Speaking of stepping stones, I have had so many of those little moments...moments when I see the fingerprint of the Divine guiding this path. About three months ago, we had a family fast for Matt and during it, I had this feeling this was going to be a longer trial, but that it was absolutely in God's hands--that we would recognize the process as it unfolded piece by piece. I reflect on that feeling on the days when I am discouraged because I DO feel like this is in God's hands. I could not have orchestrated or predicted 90% of the productive things that have happened thus far. It is so hard to not have answers yet, but I am learning in therapy that I need to stop running the emotional marathon of trying to figure out how the next part will play out before we even get there because i will arrive at the "next part" already depleted from the anxiety anticipating it.  I'm trying to be more present-focused, controlling what I can in the moment. I still wish I could see what's next, but I suppose that might make me focus on "next" vs. recognizing the miracles in the middle.  That's where the growth is...learning to look at life in a way that allows you to see the miracles. 

The Invisible Parts

 I started therapy recently--it's hard for me. I don't think I am good at it. 

Yesterday during our session, she said something about things feeling out of control and swirling around...and I heard "swirly" which conjured up images of having your head shoved in a toilet. by a bully. I realized that is kind of how I feel--like I'm caught in an emotional swirly.  Also, poop themes seem to speak to me, especially when I am talking about Matt. 

I'm sitting locked in my room while Matt is banging on the door with a babysitter chasing him around the house, both of them sweaty (I just took him potty for her and they are literally sweating from running around). It is snowing outside which is literally like a prison sentence to Matt right now as we are navigating an extremely difficult phase with him. School is cancelled.  The only things we can do with Matt to keep him happy are taken off the table--drives and walks.  Right now, he requires complete 1:1 attention or his behaviors become completely unmanageable.  He has zero independent leisure skills right now and is struggling to attend to the activities he used to like doing.  He literally runs around like a caged animal until we get into the car (where he kicks, pulls your hair, bangs on the window, throws shoes at you, or chews on his collar) or go on a walk during which he is angelic and loving. 

This morning, Matt BURST out of his sleeping tent with the energy of a caged animal, throwing his stinky, poopy-pajamed body at me for a massive hug while he laughed loudly. You cannot help but LOVE the gigantic smile on that boy's face lately and the intensity of the hugs he gives. He literally hugs me for a solid 2+ minutes every morning.  After getting him in the bath, I ran to load some laundry and he got out and slipped, sprawling on the floor, so Adi is yelling at me. I wash him, towel him off, apply deodorant, and accidentally lose my grip on him and he runs into Adi's room and body-slams her sleepy self with his nakedness which totally freaks her out--he's a man, after all. No little kid body parts on this dude. So she's yelling, he's laughing maniacally, and that's how our day starts....and that's the beginning of the emotional ramp up. 

Once downstairs, he is throwing chairs, metal waterbottles, shoving dirty rags in his mouth, throwing anything he can get his hands on across the room. I need to make breakfast, so Adi and Liam take him upstairs where he pokes Liam in the eye with a book, bit him seven times over the course of the morning and finally Liam locks himself and Matt into Matt's room where I can hear him banging loudly on the door. Liam wrestles with him and tries to get some energy out, but instead, things escalate even more. 

During this, Matt's psychiatrist calls me. I have been desperate to talk to him as Matt has new meds on board as we are trying to navigate this new level of intensity he seems to be experiencing (raging hormones in special needs kid are not for the faint of heart and I'm sure exacerbate whatever is happening). During the course of our call he asks me, "what's next?" I almost yelled at him....what's next? YOU TELL ME! I am at a total loss as to what we should do next. Luckily, he was being rhetorical and we started to talk about things we need to consider. 

Todd and I have started having the conversations that no parent ever wants to have about the health of our family overall and what is best for EVERYONE and that includes the possibility of finding care for Matt outside of our home. How can I even say that out loud? How can I consider the possibility of someone else getting the morning hugs from him? How can I fathom the idea of another person getting up with him in the middle of the night? They won't know to let him do a giant stretch before you put his weighted blanket across his stomach, pull the blanket up and kiss his face with a super long, hard cheek-kiss in order to get him to fall back to sleep. How can I possibly do this? I feel like someone is taking a part of my insides and ripping them out of me. It makes me physically ill. 

At the same time, how can we sustain this? We all benefit from Matt's presence and the things we are learning as we practice patience, care for his every need, and learn flexibility. He is a gift to our family...but right now, things are so disruptive that their emotional needs are not being met. I have to consider the fact that Liam only has two more years in our home--how can we have conversations about all the important things we need to discuss during this time if I can't even talk to another human being without Matt screaming in my face, eating something he shouldn't, or throwing an item at my head? How can I help Adi with her homework or take her and her friends to do something if I can't find care or leave Matt alone long enough to help them find pens so they can do an art project? The wrestle is so painful and I am really struggling to understand God's will in all of this. This is the invisible part of our very visible struggle. 

Today the doctor suggested I call a place called Albertina Kerr--they have subacute in-patient crisis care, but he does not think they will accept Matt because of his behaviors. Regardless, it scares me to death. I called and left them a VM during which I fully lost my composure and just cried...to the machine (not even a human). We are also exploring something called the CAT (comprehensive assessment and treatment) program at the Huntsman Mental Health Institute in SLC, UT. They have a team that is currently assessing whether they would be a good fit and could anticipate positive outcomes from treatment there based on the info I have provided. If they do, he will go there for 6-8 weeks of in-patient care. It feels like a very positive place and I'm excited about that possibility, but it costs a FORTUNE and will likely not be covered by insurance. I'm working on that a little, but we don't even know if he will get in. Then there are schools with residential care...but exactly ZERO of them are here--most are across the country. 

I have been completely overwhelmed by the love that has been shown to our family during this very visible trial. I weep in church as I watch people scramble to help us, flounder to know what to do, offer their time and energy to try to ease our burden. I am BLOWN AWAY and sustained by that love--it's God's earthly angels. It is how He is answering my pleading prayers right now.

I literally do not know where we are going to land. Why do I share all of this while we are in the middle of the journey? Therapy. And because that's just what I do when i feel this tug in my heart that its time to share.  I do not want people to feel sorry for us; however, I do feel like it is important to share our stuff with each other...and I can't do it in person because I just cry too much. But its a reminder to me that when someone is going through a visible trial, there are so many more invisible struggles I am not aware of.  I'm grateful--we are grateful-- for the people who have stepped in to the invisible (and ugliest) parts of this and just loved us.  We all need to do that more. 

Come Out, Come Out Wherever You Are

 These past two weeks have been harder than I care to describe in too much detail. I have been fighting so many battles in my brain in addition to the regular, out-loud battles that go on in any normal house (get your chores done, why aren't your chores done, when will your chores be done? Is anyone going to go to bed ever? etc.). We have some not-normal out-loud battles that we have been fighting as well as Matt has been increasingly aggressive, agitated, and almost animalistic in his behavior. It has been challenging to be scratched and then hugged every five seconds...to be dragged from place to place and then shoved into a wall when he wants to get past you. It's hard not to be offended when the child you are working so hard to love seems to (UNKNOWINGLY, for sure), show you to opposite in return. It has literally required us to, every second of every day, be on our game. Matt will grab anything on the counter and throw it or shove it in his mouth, and dart from thing to thing to thing. There comes a point where patience is exhausted and you find yourself fighting not to shove back...or throw something yourself. 

More difficult than these out-loud battles are the ones in my brain though. I've been fighting feelings of resentment--I resent Todd because he gets to go to work and then come home and be the hero. I resent Liam and Adi for adding to the noise and stress at times. I resent Matt because he makes it impossible to have one minute of R&R. I've been fighting feelings of jealousy as I compare other families potential Netflix-filled ice storm response to ours which led to one-too-many drives and a wrecked jeep at the bottom of a steep hill.  I've been fighting feelings of loneliness as I tell myself that no one really understands what this is like and how taxing it can be.  I've fought feelings of anger as an ultra-sound tech shows zero compassion and an abundance of irritation as I wrestle an octopus to get an Echocardiogram from Matt. I've fought feelings of insecurity and ineptness as I grapple to figure out how to help Matt find something productive to do and come up short over and over.  

Most of all, I've fought feelings of self-loathing that I can do better through this! I feel like I should be better than I am behaving...that I should be able to rise to the challenge and laugh through it. I want desperately to protect my other kids from feeling similar feelings toward Matt, but in trying to shelter them, I end up hurting myself. That adds to the other feelings listed above and the cycle continues. 

Winter break has given me the ability to hide a little. I haven't needed to work, be super social, interact with lots of friends. I could leave quickly after every Christmas event and avoid a lot of conversations. I realized that was actually a crutch for me because talking about what we are going through in a super real way is almost too much for most conversations--I share with those I am closest to, don't get me wrong. But describing the daily will sound like a whine-fest and I try to avoid that in most cases.  So hiding feels more comfortable. I don't have to pretend or fake being OK and don't really have to talk about it....people don't have to see it. Not a lot of people step into our space during the break because the logistics of navigating Matt's tornado doesn't really match the relaxing social experience you usually visit people for. 

Today, however, I couldn't hide any more. We had a really difficult time getting out the door for church because he was so difficult--wouldn't allow me to help him get ready without bolting, wouldn't stand still for more than a split second, pushing me where he wanted me to go, pulling my hair when we tried to go for a drive, kicking me when I put him in a different seat in the back seat so he wouldn't be pulling my hair from directly behind me. We finally arrive at church and get to the doors of the chapel...and Matt turns around and bolts from me down the hall. I send Adi and her friend into the meeting we are already late for and start chasing Matt.  When I catch him, I caught the eye of a couple of friends and when one said hello, I literally told him not to look at me because I could feel the emotions rising. He was giving me an eye of sympathy and the dam burst.  Instead of just letting me walk away, however, he came after me. Where most people would have been afraid to enter into the space of a highly emotional person who probably looked completely insane, he followed me and invited Matt to go on a walk with him. I composed myself and made my way to the restroom to clean up my now mascara-streaked face. Unfortunately (fortunately) there was another friend who wouldn't let me sneak past...she just hugged me...which made me cry harder.  I made my way back into the hall and the first friend was still walking with Matt and said he could walk with him for as long as needed. I insisted we try to go into the chapel because I don't want Matt thinking he can get out of things with behaviors. We get to the bench where my kids are and Matt bolts for the front of the chapel where Todd is sitting on the stand. I get to him and grab him, but it takes a lot of my strength to force a course change and I medium-wrestle him out the door in front of the entire congregation.  When I get out, I find more friends...several of them...who followed me out, each offering to take Matt, each willing to rescue me.  That continued for the rest of the church meeting. I had a nice break as friend after friend spent time with the tasmanian devil, cherishing his hugs and giggling as they chased him or got dragged around the church. 

When we got home, I kept wresting the octopus, fighting the food-ninja, getting shoved into things, but it felt a little different. The story in my mind had changed. I still feel exhausted to the point of tears. I still feel sad that I haven't figure it out. But I feel SEEN.  I put Matt in the stroller when nothing else would work and pushed him around for an hour and thought about this. I feel like Satan wants us to hide. From the very beginning of human history, he has encouraged us to hide (thank you, Adam and Eve story). I've always thought about that as Satan saying "you need to hide because you are naked (vulnerable) and you don't want people to see your vulnerabilities!" I thought this was a strategy to convince us that we should be ashamed of our vulnerabilities. However, I realized there is even more to it today. Satan wants us to hide so that we feel more isolated, more lonely, more ____ (fill in the blank) because the minute we allow ourselves to be seen, someone just might come to our rescue.  He doesn't want us to feel connection. He doesn't want us to feel lifted and unburdened.  The opposite.  We cannot give him the victory that hiding inevitably leads to.  

My feeling is this: come out of hiding. Literally just take a step out and let yourself be a tiny bit seen and exposed. People cannot rescue you or lift you or share your burden if you keep it hidden and don't allow them to catch a glimpse. Give others the chance to be your angels on earth.  The hard parts of our situation haven't changed in the least, and my eyes might still be leaking a little as I struggle through the hard parts,  but my heart is literally overflowing with gratitude and my thoughts are filled with love for the good people who want to help. I feel seen vs. isolated and lonely. Loved vs. inadequate and self-loathing.  It WILL be OK.  

Matt has PMS :-)

Several months ago, we were in a really rough space with Matt.  We were seeing so many signs of regression in his speech, potty training, behaviors, and other areas. It was hard not to feel depressed and it was overwhelming to deal with on the daily.  We sought the help of a developmental pediatrician (getting in to see her was a miracle in and of itself--I think the fact that I cried on the phone with her office manager may have helped us bypass the extensive waiting list and sneak past rules related to Matt's age).  

During one of our meetings with her, she encouraged us to pursue genetic testing.  We had done some in the past, but it had not yielded much. I realized that I didn't really understand the point of it, and this incredible woman, who is so good and explaining things, walked me through the reasons.  She suggested that the research has improved dramatically since we last did testing and the chances of finding something are much higher than they were before.  The geneticist from years ago said doing further testing would be like searching for a needle in a haystack--and even if we did find a variation, the chances of that variation actually explaining anything were even slimmer.  However, she said that any results might help us better understand Matt's prognosis and guide his current therapies and treatments.

We had to fight for awhile to get a visit to the geneticist approved.  We met with him and he encouraged us to move forward with a very specific type of test that went quite a bit deeper than the one we had done previously.  It was a very expensive test and the battle with insurance began at that point.  He noted several visible things that he said could be related to a genetic variation or specific, known disorders and that helped us make the argument with insurance that this might yield something. He also talked about the fact that learning more about Matt's diagnosis would help guide therapeutic planning for his future and rule out the need for additional tests and therapies (which means less $ from the insurance companies).  Regardless, they still denied this test over and over.  

February 1st, we switched insurance providers so the genetics team at OHSU got back to work, trying to get this test approved.  About 2 months ago, they called me with that approval and a genetic counselor got on the phone with me to talk about possibilities from this test.  I was so impressed by the amount of information these tests have the potential to yield and realized that there are some pretty dramatic psychological impacts of having that kind of information about Matt or either of us (Todd or I).  In the process of trying to find things out about him, we also had the potential to learn things about ourselves.  We decided that we wanted to know everything we possibly could from the testing and signed our life away accordingly. 

The test was a nose-swab for Matt and saliva for Todd and I.  We sent it in and within just a couple of weeks had results.  I got the call from them to go over those results and she started the conversation with "we have a diagnosis for Matt!" I was shocked.  I literally had zero expectations and almost no hope!

Matt has a mutation on the Shank 3 chromosome which causes something called Phelan-MeDermid Syndrome (PMS for short).  A syndrome is basically a collection of symptoms and those that go along with this describe Matt to a tea. Profound intellectual disability, moderate to severe speech delay, autism, epilepsy, GI issues (both poop issues and reflux--explains Matt's burping), funky toes (his toes are a bit weird), fluctuation in skills (what I had called regression might just be fluctuation), psychiatric issues (anxiety, ADHD, bi-polar disorder, OCD, etc.), behavioral challenges (impulsivity, aggression), and so many other things.  

Why do we even care? This changes nothing... FALSE.  It changes the lens...the paradigm...the window through which we are looking at our son.  Having this type of information has done two dramatic things for Todd and I. First, we know it is not our fault.  You can't help but question whether there is something you could have or should have done differently when your child has a disability like Matt.  Each of us had our own questions--Todd wondered if it had to do with a vaccine he had given him against swine flu when I was super sick in the basement with it.  I wondered if I had fried his little egg by going in the hot tub before I knew I was prego.  Second, we can stop searching for the next thing to help "cure" him.  His whole life, people have suggested treatments, both medicinal and natural, to help treat autism, from diets, to stem cells, to brain mapping to thermal pods, to vitamins, to therapies...and the list literally goes on and on.  I cannot tell you the guilt associated with the things you aren't doing when the list is so long and it is so dang exhausting, time consuming and often financially burdensome to understand and try them.  There isn't something we are going to fix...and while to some that might feel like a reason to lose hope, to me it feels like a reason to embrace it.  We now know what to hope for.  

The other thing that is really hard is planning for an unknown future.  Being able to connect with other families who have kids with PMS will help us better understand what to expect for Matt's future.  I have always looked at kinds with autism and wondered if that was what Matt will be like when he is older. Candidly, I have never resonated with the autism diagnosis as the main explanation for Matt.  Some of the things that he has dealt with do not fall under that umbrella at all.  Getting a new umbrella that feels more comprehensive and true to Matt is a beautiful blessing. 

So what now? The is a foundation called PMSF.org and we can find information and research. We can connect with other families.  We are going to need to do some additional testing because often this comes kidney issues and we want to rule that out.  We are waiting for our appointment with the geneticist to talk next steps...and I'm sure there will be some.  But now it doesn't feel like we are barking up a tree that will likely be unproductive.  Instead, we have a map of the forest and can pick which trees we are going to climb based on science and research and experience.  

This feels like a miracle to us!  We are SO grateful!

Weight of the World

 It's amazing how there are times in your life that a series of difficult things happen very quickly...and it can empty you and fill you simultaneously. That's how I feel about the last 36 hours.

Matt started choking again on Sunday. I think I noticed it less because it was dramatic (just a little difficulty swallowing and more overstuffing of his mouth) and more because of Adi's reaction to it.  I did notice that is seemed to scare Matt though.  When he is choking, his reaction is to bang his head with his hands and stand up abruptly--that did happen and he did seem a little frightened by it.  However, anytime Matt would even touch his head, Adi would frantically point it out with absolute terror in her voice and fear in her eyes.  That strong of a reaction surprised me a little bit and prompted some reassurance as well as a little bit of irritation--it felt like an over-reaction, but we tried to be kind.  After it happened three times that day though, I'll admit that the Mamma gut started talking. 

Fast forward to Tuesday.  I'm out with friends and Todd has all three kids and is feeding them dinner.  I think I made it a tiny bit spicy and Matt started to bang his heads with his hands--also a common reaction when something is spicy--and make a noise in his throat like he is trying to clear it.  Boy has ZERO spice tolerance so we do see this reaction frequently.  This time, however, it was a trigger for Adi. Todd described this to me the next morning and then, a few minutes later, Adi came and climbed into bed with me. 

I just cuddled her and let her talk about how scared she was the night before and how frustrating it was to feel like no one understood how she was feeling.  She said she almost felt stupid because she felt SO anxious and knew it was not something either Todd or Liam could relate to. As her somewhat anxious mother, I CAN relate to those feelings, so I tried hard to validate how hard it can be to process something like that experience with Matt and that it is very normal to feel afraid when something reminds her of it.  We went about our morning, but when Matt woke up, I saw exactly what had happened the night before play out again.  

Matt is very impulsive and right now, he is grabbing things and shoving them into his mouth.  He literally woke up and started walking around the kitchen grabbing anything he could find on the counters (mostly edible but not all) and shoving it into his mouth. Adi would FREAK OUT in response--scream, yell at him and me, and be stuck between helping and running away from the situation out of fear (fight or flight was in full force).  So I was attempting to wrangle Matt and keep him safe while trying to keep Adi emotionally safe.  She finally just came over to me in tears and I hugged her while she cried and explained how terrified she is. I called a mental health day (kept her home) which calmed her significantly and we were able to get Matt on the bus without further incident. 

We talked about her feelings throughout the day and at one point, called a friend who is a mental health professional to ask for some advice.  This angel of goodness came over to our house about an hour later to talk to Adi about all of this and do a little EMDR which is supposed to help with acute traumatic stress disorder which she is clearly suffering from.  I was able to sit in and watch/listen as she attempted to unpack all that is going on in her little 10 (now 11--happy birthday to my girl) year old brain.  As she did, I was fascinated, devastated, scared, helpless and grateful all at the same time. Fascinated because there is so much interesting thought going on in that girls head and it is so intriguing to see how a professional skillfully asks the right questions and has the perfect responses to elicit that information.  Devastated because my daughter is suffering--I feel like I got a glimpse into the torture that goes on in the brain of someone who is truly anxious and trying not to be.  Scared because I don't know what this means for the future or if it something she will always deal with AND because I also see a little bit of it in myself. Helpless because I can't make it all better--there is no quick fix to this problem that seemed to emerge so quickly.  And grateful because I knew that what I was learning was helping to clarify some things that confused me previously about my daughter. 

I learned that Adi feels responsible to keep Matt alive.  Talk about the weight of the world.  As she unpacked the memory of what happened--the look on his face, his eyes rolling back in his head, his body going limp, what he was wearing, the stains on his shirt from when he threw up a little, where she hid in the kitchen, the sounds coming from his throat as he was first starting to choke, and then the lack of sound afterwards--I realized that she was hanging on to every detail, but didn't know how to piece them together in a way that allowed her to process it.  She knows rationally that Matt probably won't choke like that again, that we know what to do if he does...but she does not feel like she is capable of helping at all.  She felt helpless then and therefore assumes she would be helpless again in the future.  At the same time, she doesn't want to leave me alone with Matt because I wasn't strong enough to help him then...so she worries that if she leaves me alone, he will die.  If she is there, she could at least call 911 because she thinks I couldn't do both.  At the same time, she isn't sure she could because her body wants to run away.  So she feels like she has to stay with me when Matt is around, but is so triggered by Matt that she is literally incapacitated and panicking in his presence.  

I sat there behind Adi while she described this with tears pouring out of my eyes.  I can't take this away or even, through all the rational discussion in the world, help her to reason through this.  This is in her brain and she is going to need more help than I can give her to sort it all out.  The tragedy of it is how it is seeping into other areas of her life as well.  If a kid coughs at school, Adi has a visceral reaction to it.  If someone talks about choking, she gets angry because they might make light of what it means to choke since they never stopped breathing...and that's "real" choking to her.  

This morning I had a meeting with the elementary school intervention team--it includes the psychologist, school counselor, principle, intervention specialist, Adis' former and current teachers, and other specialists.  Adi has struggled with dyslexia for the past few years and some of the delays in her academics are feeling more urgent and pronounced to me as she approaches middle school.  So I insisted that we have a meeting like this to discuss the possibility of further intervention (for anyone concerned about their kiddo academically, it is your right to make this request where teachers have to look at data vs their gut to suggest it...and it has to be pretty dramatic for data to drive them to do an eval).  As we talked through my concerns and their observations, I realized that there is a HUGE part of this that is fueled by this same anxiety piece that has become painfully obvious to me in the past few days.  As they shared about the interactions she has had with teachers and peers, I started to see much more clearly what is going on with her--things that would never caught my attention before were keys to unlocking this little puzzle.  I feel like, as a result, we were able to piece things together in a way that will work to her benefit and they all agree that she needs to be evaluated for an IEP or 504.  

Here's the thing...that means something big to me.  It isn't just the right step...it is a hugely emotional step for me.  I have been through this with Matt.  It is hard, time consuming, emotional, and kind of scary to take a magnifying glass to your kiddo's struggles.  You don't expect it to feel hard, but it is so draining.  Maybe I feel that way because it was so dramatic with Matt.  Regardless, it buried me this morning.  I may have burst into tears in the middle of that meeting as the weight of it came crashing down. In my defense, I went into the meeting a bit drained and frazzled...Matt had woken up at 3:19 a.m., we had just learned of a COVID exposure the night before, and then I had discovered a giant poop that had fallen down his pant leg and wrapped around his sock just as I was walking out the door. So there were a few things kind of working against my fully-functional rational brain's ability to process it all. 

So here we sit.  I am no less buried, but I did just SIT for a bit when I got home from getting Matt a COVID test and dropping him off at school.  I am seeing more clearly the path moving forward.  The hard part is that I need help more than ever so that I have a second adult with me any time Matt and Adi are together, at least in the short term.  So Todd and I are talking through changes we need to make to both be home any time both of them are home.  I'm still trying to find more respite so that we are able to function through this phase.  But we WILL make it through this phase.  I had two angels that rescued me today to make everything that needed to happen today possible and as much as I hate needing help, I need help. The humility it prompts as well as the peek into the goodness in others that it gives me is inspiring.  Now, onward and upward....I have some phone calls to make :-) 

My Sloth Ninja

 Matt isn't exactly the fastest runner (he's quite disorganized and limps with limbs flailing when he runs).  He isn't quiet and stealth (he's probably the opposite).  But this kid can do a few things with the skill of a ninja and take me completely off guard. 

One of them is steal food.  Frequently, I have something I'm just about to eat--or I've saved the best bite for last--and it disappears from my hand or plate before I can possibly stop it from happening.  Well, one of the problems we are discovering with the ninja food-stealing skills is that Matt is so anxious to actually succeed that he shoves whatever he stole into his mouth as fast as possible.  Since his choking episode, we are noticing that he is choking FREQUENTLY.  And I think it's scaring him.  Today, for example, he had three separate times that he struggled with a mouthful and got that panicked look on his face and one of us dug food out of his mouth, or he spit it out, or we had to hang over the sink until he calmed down.  So this ninja skill is actually starting to make me a bit nervous.

The other one was newly discovered today.  I have pulled a muscle in my butt and I was REALLY uncomfortable at church, so every time Matt needed a walk, I took him.  At one point, we made it all the way around the church to the other side and, from the lobby on the far side of the chapel (opposite where we had been sitting as a family), Matt spots Todd.  He had been sitting peacefully, transferring himself from couch to couch...and then all of a sudden when his eyes locked on Dad, he BOLTED.  I tried to grab him, but missed. I started to hobble after him as quickly as I could, across the entire chapel full of people.  He got to Todd who was sitting in the back row of pews, but rather than walking in and taking a seat beside him politely, Matt threw a leg over the back of the pew, pulled his body up, stood up nice and tall on top of the pew, and then sat himself down on Todd's lap.  It was his equivalent of church parkour.

The good news is that doesn't happen often.  The bad news is that Todd and I could not stop laughing afterwards so I'm sure we were pretty disruptive.