Love Day

I love Valentine's Day. I love making people happy, spreading love, spoiling my kids, enjoying a whole day devoted to kindness and love. I love the romantic part of Valentine's Day too, of course, but now that we have a pack of kids, "romance" has taken on a different meaning. Alex and I enjoyed a "romantic" breakfast, just the two of us, at a diner close to our house while ALL the kids were at school. That was romance, let me tell ya. If we're able to have an uninterrupted conversation, not cut up anyone's food or feed anyone or tell anyone "Enough syrup!!," then that is romance.

My day started well before the sun came up- Ella had a rough night. I didn't get much sleep. At about 5 am, I heard the kids all rustling around. At 5:30, Ben and Ella came in to wake me up, insisting that I come downstairs RIGHT NOW. I have learned that this insistence usually means they've cooked up a surprise, so no matter what time it is when I'm summoned, I go. I just drag my eyelids open and stumble down the stairs to see what it is that my kids are so excited to share with me.

As I came down the stairs on V Day with Ben and Ella, Jonah and Aidan popped out from behind a door and they all chimed "Happy Valentine's Day, Mommy!" This is a huge shocker: they were ALL DRESSED (usually this is fight numero uno every morning)! Then they gave me a card. Inside, they had all very carefully signed their names in SUPER neat handwriting. Taped to the other side of the card were two 1$ bills. The kids were so excited to tell me they had given me this treasure so I could go to Starbucks today!! I just about burst into tears, they were so sweet. They had taken money from their allowance and given me one of the most special gifts I've ever gotten. Those kids. Boy, do I love them.

Daddy and I had valentines ready on the table for the kids before breakfast. Teacher valentines were in backpacks, ready to head to school. We had a lovely morning without any fighting. Everyone was calm and excited about Valentine's Day celebrations with their classes. Even Ella was going to have a class party. 

While everyone was at school, I made Valentine cupcakes for my sweeties- a family tradition. I also had time to run out and look for a special gift for each of them- something they could always wear that would remind them of Daddy and me (instead of wearing my coat or boots, or Daddy's sweatpants). I found the perfect little treasure for each of them.

We had an awesome day. The kids were happy, they each got 30-some reminders from their friends about how much they are liked, I got to do some special things for them, and I got to have breakfast alone with my hubby. I love Valentine's Day.

Outside vs. Inside

Here's how it looked from the outside:

We were having a "Horrible Day," as Ella calls it when her brothers are having behavior issues. It was Saturday, and all three boys were supposed to be going to Aidan's counseling and then karate with Dad. Dad may have temporarily forgotten how long it takes to get the boys ready to get out the door, since they all have ADHD and can't focus long enough to tie a shoe most mornings. Dad may have expected the boys to rush like typically developing kids are capable of. Sometimes Mommy does the same thing, sometimes we forget our kids have special needs to the extent that they do. 

The boys were lalagagging. Dad and I were stressed because they were going to be late for therapy. The boys started having meltdowns. All three of them. Not easy to handle. In fact, it was total and complete chaos. If they start having meltdowns while you're trying to get them out the door, it's like the whole family is moving in quicksand- everything is a million times more difficult and takes a million times longer. 

So all three boys are freaking out, swearing, yelling, crashing chairs, whatever. Ella is doing her best to stay out of the way of the "Horrible Day." Alex and I were doing our best to stay calm and move the family along to the next step of the day, but we were failing. I was very emotional because sometimes I just can't believe that this is my family. That this is how the children that I have raised can act. Sometimes it just boggles my mind how our life can fall totally apart over something simple like trying to get karate uniforms on and head out the door on a Saturday morning. 

Finally, all the boys exited the house. I tried to repair Ella's fragile little world by spending some extra time with her. Alex dropped Aidan off at counseling and then came back home with Ben and Jonah. Ben had been having more of a meltdown because he didn't want to do karate all of a sudden, which made the rest of the family upset and disappointed for a couple reasons: We've paid for him to do this sport weekly. He said earlier in the morning that he did want to go to the class that day. It had taken moving heaven and earth to get him out the door with his brothers. 

Ben came in the house after Jonah and Dad. He took his boot off and whipped it across the kitchen as hard as he could, trying to take out something that would make a loud crash along the way. Then he did the same thing with the other one, all the while yelling at the top of his lungs. He smashed his coat onto the floor as hard as he could, and yelled some more. He and Dad had had a big fight on the way home. Big. Ben was in tears while he screamed, and Alex was visibly exhausted from the last hour of fighting with the boys. 

Ben went to the back closet and got my winter coat out. He put it on. He took my winter boots out and put his feet into them. Alex continued to try to convince Ben to do the karate class that morning but Ben kept yelling no, he was NOT going to do it, while tears dripped down his face. I asked him if he was angry because Daddy had hurt his feelings while they were fighting. He said yes, but that wasn't the only reason he was upset, he said. He said he was upset because Daddy had hurt MY feelings. (!) He burst into tears, opened the door and went outside into the cold and snow. 

Crazy, random behavior, right?

Here's how it looked from inside, if you know Ben deep into his heart the way I do:

Ben witnessed the family having some moments of chaos. He can't deal with chaos. The only way he can react to outward chaos is with his becoming chaotic and disorganized himself. This is why Alex and I do our best to limit the chaos in our home, for all the kids. Ben saw me upset, and I was upset because of the whole situation, not because anyone had hurt my feelings. Ben sometimes misinterprets situations, especially those involving emotional overload. Sweet Ben was hurt on my behalf, thinking my feelings had been hurt by Dad. He was lashing out at Dad because he thought somewhere in his subconscious that he needed to find a way to protect me and comfort me- which means he is capable of feeling enormous empathy for others, which means all our work is paying off.


[]'}"{Ben reacted aggressively toward Dad. Dad responded with being upset. Ben's feelings were hurt but instead of expressing his hurt, he emotes anger. As Ben stood in my coat and boots, I asked him if he was hurt more than angry. I could see he was, and wanted him to identify this feeling for himself, to sit with the uncomfortableness of hurt feelings and label that feeling correctly so that in the future there will be one more instance he can recall of having hurt feelings instead of just the global anger he has always felt and expressed. We've been working for years to get him to differentiate between his feelings, identify how he feels, and be aware of what situations trigger which feelings.  So he did say that yes, he was hurt, not really angry. 

But there was a layer to that hurt that neither Alex or I saw coming- the fact that he was hurt for me because he thought I was hurt. 

I know he put on my boots and coat for the same reason the boys wear Alex's clothes to bed when he's on a business trip: he wanted to be close to me. He wanted to comfort me, and also be comforted. He wanted to do all those things but at the same time couldn't verbally express that and didn't want physical contact. So he did what he instinctively knew how to do. He wrapped himself in the warmth of my things.

Ben also refused to go to karate. Instead he went out into the snow by himself. When he came back in the house, he put on his noise-blocking head phones and retrieved his blankie. He knew how to soothe himself!! This is HUGE!! He knew what would make him feel better, and he did it all by himself! Again, we've been working for years on self-soothing in therapy: what can Ben do to make himself calm down and feel better? He has had difficulty with this skill since the moment he took his first breath in this world, and has relied mainly on me to navigate his world with him, making it safe and comfortable for him since he can't make sense of it sometimes and is incapable of soothing himself. 

Just like any father, Alex wants to share experiences with his kids, and karate is an interest that they all have. When one of the boys doesn't want to participate in karate, it's disappointing because it's an activity that all the guys in our family can share and now someone will be missing. That Saturday, though, Ben was saying a few things with his statement of "No! I don't want to go to karate!" He was saying he felt he and Dad needed to have some space to cool off. He was saying he was too overwhelmed with his emotions to be able to handle karate that day. He was saying he knew how to take care of himself and needed to do the things he was doing. He needed to self-soothe. And we let him do that. 

Alex and I talked afterwards about how actually amazing the whole thing was for Ben, what an incredible milestone. I couldn't believe he instinctively knew how to calm himself down! He knew my coat and boots would help him feel better. He knew he needed alone time so he would stop being upset. He knew he needed silence (head phones) and softness (blankie). He knew what he needed...and then got it for himself! Amazing.

So yes, from the outside, the whole thing looked a little bonkers. A little disconnected and random and odd. But if you know my boy, and you know what he's been working on for 10 years, and you know his struggles and limitations, you know that this was a life-changing moment for Benjamin. He experienced a strong negative emotion and then dealt with it appropriately, not with a rage. This was a success. This was movement in the best direction possible. This was amazing. 

I'm proud of my Ben. He's making changes that would be tough for anyone, even a grownup, and he's not even realizing how much he's changing for the better. He's an incredible kid. I like being on the inside when I catch my kids growing in all kinds of ways.

Tale of 12 Teeth

Our poor 10-year-old boys. This week they each had to have six teeth pulled! Big ouch. Big ouch on the Tooth Fairy's pocket book, too! Four baby teeth and two permanent ones that were actually still in the gums. Blegh. The orthodontist says there's just not enough room in their mouths for all their teeth. I always dread this kind of thing, because not only is it a horrible experience for typically developing kids, when your kids have any type of special needs, these things can mean major trauma. And major drama. For a really long time.

Tooth stuff makes me want to throw up. You know, my dentist phobia and all that. So try staying strong for your kids when you yourself are fighting your phobia, trying not to grab your boys and run away with them into the sunset to lead a life free of dentists forever! (Nothing personal, dentists out there) 

The boys wanted me to go back into the anesthesia room with them at the oral surgeon's office. Daddy said apparently he's "just the chauffeur." Jonah went first so as to hopefully alleviate his panic. He did so well, I was amazed again at his courage. He got laughing gas, giggled the whole time, and was cool as a cucumber when he got his IV put in for the anesthesia. Then he was out. I was escorted back to the waiting room to wait for Ben's turn. 

Jonah's surgery went well, and Alex met him in the recovery room while I went with Ben to get started on his anesthesia. I thought he'd be a giddy, laughing, hoot on laughing gas, but apparently it brings out his serious side. He hardly uttered a guffaw. He actually wouldn't even make conversation with the doctor and nurses. I think he was just too scared and worked up, and then the tingles of the laughing gas took effect and he just didn't know how to process it all. He did fine, despite his anxiety, and was soon asleep too. 

I went to be with Jonah while they did Ben's surgery. Jonah was completely loopy, coming off the anesthesia. He had made some very interesting new friends while he was asleep- two unicorns named George and John. (Daddy's "Beatles" influence, perhaps?) Jonah had a hard time saying goodbye to these new friends, and insisted on petting them before he sent John to be with Ben in his surgery. Jonah also declared, loudly and frequently, with his mouth full of bloody gauze, how much he loved us. And the nurse who came into the room to check on him. And he also stated how pretty the nurse was. And how he wanted to see the doctor so he could say thank you and give him a hug. Jonah. Always sweet, even coming out of anesthesia. Loopy, but sweet.

Ben's surgery finished and we were all able to go be together in Ben's room. Jonah stood up for the first time, his blood pressure dropped, and he almost passed out. He felt really terrible for about an hour after that- much more pain in his mouth along with feeling nauseated. It was rough. Poor Jonah cried a lot. Ben was waking up, and although he was out of it, his main concern was consoling his brother. Ben shed tears because Jonah couldn't get off my lap to go get a hug from Ben so Ben could comfort him. Ben. Always compassionate, even coming out of anesthesia. Teary, but compassionate. 

Jonah's recovery that day was an hour ahead of Ben's. So about the same time Jonah started feeling a little more human, Ben's emotional and physical state declined. We got the boys milkshakes on the way home, but that didn't really take the edge off the pain they were in. By the time we got home, Ben was really ramped up with angst. He talked about how it hurt so bad he just wanted to take a knife and stab his head off. He got off the couch where he'd been sitting next to me several times to go wander around talking about killing himself and crying with pain. He was still out of it from the anesthesia. I would follow him and gently take him by the shoulders and lead him away from any sharp objects in the kitchen, back to the couch, where he'd collapse in tears on my lap. Bleeding all the time. Why does a mouth have to bleed so much? Blegh. 

I kept reassuring Ben that it would get better. I kept saying "Look at Jonah! He's feeling ok now, and remember how totally terrible he felt before? You'll be that way soon, because you're just a little behind Jonah, in the Feeling Better Department, because your surgery was after his. Hang in there. It's going to be ok." Ben finally said "Mom. You've been saying I'll feel better 'in a few minutes' for an hour! When is it going to really happen?!?" Sometimes all you can do as a parent is help your kid hang on. You know better times will come. You have to hold onto that single nugget of knowledge, and push your kid towards it, whether they want to come with you to those better times, or find a knife in the kitchen and stab out their eyeballs. I hope that sometimes the sound of my voice, telling them that everything will be ok, will just lull my kids into peaceful oblivion. Sometimes it works, sometimes not so much. 

It's a horrible feeling to not be able to just fix life for your kids. To have to just sit and watch them be in pain and not be able to do anything is just terrible. Alex and I did what we could, but we can't take away their pain. We have just been trying to be super supportive and caring, and have driven them to their favorite ice cream shop every day for a special treat. That's the one thing, this week, that brings out two of our favorite smiles in this family. Thank you Suzy's Swirl. You offered us a respite during this wearing week. Today the owner actually gave us some free ice cream AND the kids got to pick as many songs on the jukebox as they wanted- for free!! Made my kids beam. They loaded up the playlist with Beatles music and rocked out while they soothed their sore gums with ice cream. Love that place.

Last night it was literally like a three ring circus at our house. I went upstairs for bed after everyone else. I checked in on my little angels to make sure they were all safely slumbering. Which woke Aidan up, who then needed TWO cups of water. Which woke up Jonah, who needed his back rubbed because his teeth hurt. After the two of them were back to sleep, I sprayed my perfume under Ella's pillow (new sleeping technique I'm trying- hopefully the smell of Mama will keep her in dreamland longer. I'm desperate!). Got into bed and couldn't fall asleep because of the rat race in my head. And my dear husband snoring like a Pug with a sinus infection next to me. I finally dozed off. So naturally 27 minutes later a child had to wake me. 27 minutes is my cut-off for sleep, I guess. 

Ben didn't feel well. And had had a nightmare. So I got him more medicine for his poor, swollen mouth, rubbed his back, smoothed away the wrinkles of his nightmare, and got him back to sleep. I went and woke Jonah up enough to give him more meds too so that hopefully that would stop him from waking up later to wake me up to tell me he was hurting. Got back to bed. Finally fell back to sleep. 

About two hours after that, Ella came in for her nightly appointment with me. Yesterday after talking with my wise, amazing counselor, I decided to again try the "back to bed" technique with Ella now that she's older. So I didn't say anything to her except "Back to bed, Ella" and took her back to her room. I stayed with her while she fell asleep and then went back to bed. By this point, Aidan had snuck into our bed. I woke up Alex to move him because I didn't think I could carry him back to his room, being so worn out. Alex took Aidan back to bed. 

Jonah and Ben each woke up once more, hurting and with bad dreams. The night finally ended at about 5:15 this morning with Ella returning to our room to ask if she could watch Peppa Pig on our TV. She had done it though- she slept ALL NIGHT IN HER OWN BED!!! If you consider 5:15 a successful wake-up-time. Which in this case, I did. So Peppa Pig it was. 

I don't know why I'm exhausted all the time.

Ha Ha Ha.

When my kids are sick, hurt, or healing from surgery, I don't harp on them about being clean for a couple days. It drives me insane, but I let them just be. Sometimes you just need to lay around and be comfortable, wallowing in your own filth. I get that. And my kids definitely like their filth. But after a certain amount of time, say 44 1/2 hours, Mama can't take the stinky breath and greasy hair anymore, and I declare that it's Officially Bath Time! Whether you're healed and healthy or not. 

Tonight was Officially Bath Time. Into the tub went all dirty kids. Faces were scrubbed, blood wiped from lips, hair was restored to its soft shiny state. Teeth were very very carefully brushed with a baby tooth brush. Bloody blankies were all washed clean for bedtime. I always feel better after a good scrub, once I'm done wallowing in the filthy comfort of not feeling well. I think my kids feel the same way. I hope tonight's Official Bath Time symbolizes a new state of recovery for the boys. I hope they sleep well tonight and wake up past a little bit of the discomfort and pain.

Tomorrow will be another new day. I have many hopes for the night ahead. I hope Ella sleeps in her own bed. Actually, I hope all the kids sleep in their own beds. I hope nightmares are gone. I hope pain is lessened. I hope little bodies can rest and repair what is hurt. I hope tomorrow will be a little better for my boys. I hope that when my boys are all grown up, they have just a faint memory of this week, and are simply grateful for their beautiful smiles that make them feel confident and charming and adorable. 

Silly Ideas

Silly, naive little me. I should know better than to think crazy thoughts like I did on Monday: "I wonder if our kids are soon going to be therapy-free. I wonder what it would be like if everyone was just even-keel, no major issues or challenges, just sort of typical. I wonder what I would do without these challenges that sort of define me. Am I a bad mom for thinking about what I would do without this stress in my life? What it would like if the kids were just typical? I'd probably be bored. Maybe that time is coming soon."

Ha. Big Fat Ha. The Universe or God or whoever is in charge is laughing his head off at me right now. Silly, naive little me. Apparently, The Universe or God was worried that I was becoming too comfortable for one single millisecond, so decided I needed MUCH more on my plate. Thanks so much. You know that saying that God doesn't give you more than you can handle? Really? Whoever decided that should be an official saying must have lived a life of relaxing luxury, with no stress at all, stuffing themselves with delicious baked goods at their leisure. Because many times I feel that I have much more on my plate than I can handle. I guess I do handle it all, somehow, but still, a little less would mean a lot more sometimes.

It was a week filled with things that scattered the matter of my brain. There were mixups with the kids. There were mixups with the school and meetings that I thought were scheduled one day, so I cancelled all of Ella's therapies that day. Then when we got to school, they said the meeting was actually the following day. Gr. Jonah came home on the bus the day he was supposed to stay after school for some help with math. Then the next day the math teacher emailed urgently in the early afternoon, asking if Jonah could stay after school that day instead, and could I pick him up. So I had to figure out a million logistical changes this week. That may sound like no big deal, but with four kids, logistics are always a big big deal. Then you add in all the little things we do all week: a zillion therapies, ballet, karate, gymnastics, etc, and it's a logistical nightmare to change even one little thing. But we made it work.

On Wednesday, Aidan is supposed to participate in a therapeutic group that works on social skills, speech, and OT skills, among other things. For reasons only known to Aidan, he dreads this group and has fought me every week about participating in it. He goes to a group on Fridays also that focuses more on handwriting and fine motor skills, and he looks forward to this group. I don't know what the difference really is, and Aidan can't seem to put words to it. But regardless of what Aidan's reasoning is behind not enjoying the Wednesday group, this Wednesday was no exception and Aidan dug in his heels and refused to go upstairs for the group. Usually I have a couple tricks that will work to get him to reluctantly go, but this week nothing was working at all. Aidan shut down and just got more and more cranky and loud in his refusal to participate. 

One of the therapists who helps to run the group came downstairs to see if he could help to figure out why Aidan didn't want to go to group. The poor therapist worked like crazy for an hour, following Aidan around the waiting room as Aidan tried to avoid the therapist, trying to get some insight into what Aidan was feeling or the reasoning behind his actions. Aidan just kept trying to avoid the situation by having a meltdown- he knows that if he is loud and crabby enough that usually he'll get the alone time that he desperately wants. But Aidan's therapist kept at it, kept trying, kept track of Aidan and wouldn't let him off the hook so easily. I felt bad for the couple other parents in the waiting room who had to deal with what ended up to be my kid's hour of private therapy, in public. But like I said in a previous post, what happens in waiting rooms stays in waiting rooms, and the other parents graciously pretended nothing unusual was happening. Bless their souls. 

I let the therapist work on Aidan without interfering too much. My techniques obviously don't work all the time for him, so I thought I'd give the therapist the opportunity to try and build trust with Aidan as well as try to be successful in his attempts to engage Aidan. Counseling has never worked with Aidan in the past because he just shuts down. Won't talk. Won't cooperate. Won't play. And usually cries about not wanting to go and not wanting to leave Mama. 

I think that counseling is a great gift for my kids. I want them to be able to have a safe place to go away from Daddy and I to talk about whatever they need to talk about. Of course Alex and I are open to anything they want to talk about too, but a counselor is neutral, has your best interests at heart, and isn't Mom and Dad. In our experience, counseling has been an amazing, strengthening opportunity for growth and understanding of ourselves. We have all learned coping skills, techniques to deal with our emotions, and ways to have more patience for our family members. I want Aidan to have the same opportunity that the rest of us have taken advantage of.

I was impressed with Aidan's therapist's tenacity. He wouldn't give up. I gave some input here and there when it was appropriate, but the therapist got to see some of what makes Aidan's behavior challenging. Finally at the end of the hour, the therapist, whether he knew it or not, was hugely successful in gaining some trust with Aidan, and cooperation. He asked Aidan a question and Aidan answered! With more than a screech of anger! He asked Aidan something like "See you at group on Friday? We can talk more then?" And Aidan looked at the therapist in the eyes and mumbled a soft "Yes." I don't know if the therapist realized it, but that meant he got to Aidan. He got Aidan to open up, he got him to cooperate with answering one question appropriately, he got him to connect with his eyes. 

It was a long hour.

We decided Aidan will take a break from the Wednesday group. It's not worth the stress and fight for me to get him there. He will also start seeing the therapist who helped him this week, one-on-one and hopefully not in the waiting room. I'm hoping that Aidan will be able to connect with him and just have someone to fall back on when he's struggling. When I know my kids are getting counseling, I feel like I have a safety net for them, to catch them in case I miss something or don't know how to deal with something, or in case they just need an outsider's point of view.

This week I had Aidan's 504 Plan meeting with the team at school. He's really struggling to focus, stay on track with what he needs to do to complete work, and he works very slowly. The poor kid. He has so much going on. And once you hit grade school, life speeds up and if you have anything slowing you down or complicating your life, it becomes magnified because you suddenly really aren't fitting into the "norm."

Yesterday, Jonah got into a fist fight with a neighbor boy. Actually, Jonah didn't use any fists, just words (that he knows he shouldn't be using anyway), but the other boy decided fists were appropriate to use on Jonah's face. Jonah came home with a bloody nose and lip, not too serious but very very upsetting. Alex dealt with the neighbors involved, and hopefully we will not have a repeat of this situation.

As I have been writing this, Jonah came in from snowboarding with ANOTHER bloody lip- this one pretty severe. His whole lower lip was sliced open a little bit, with one big blob of 'ouch' right in the middle. His loving twin brother had pushed him face-first down the hill into his snowboard and Jonah had banged his lip. I'm tellin' ya, this is not Jonah's week. 

Meanwhile, Little Miss Sunshine still refuses to sleep without being plastered right next to Mama. She goes to sleep fine, then in a few hours wakes every night to come in our bed. That would be fine, if she actually slept well. But she doesn't. She tosses and turns (I finally got smart and put a pillow between us so she can't kick me anymore. Ha! Take that, sleepy little legs!), and whenever she realizes that Mommy has actually dozed off for three minutes, she whispers me awake. "Mama. I need a drink. Mama. I'm cold. Mama. I can't find my cownow (the corner of her sleepy blankie that she rubs as she falls asleep). Mama. I love you. Mama. I love you SO much." Hmm, I'd love you even more if you told me this in 4 hours, sweet daughter!

I called the pediatrician again this week about the lack of sleep Ella and I have been getting for the past year. I said I wanted a referral to someone so I can get help. This is nuts. It's been TEN years of not sleeping and I think that's utterly ridiculous. So I got a referral to a pediatric sleep specialist that we'll see in a couple weeks. Enough. Mama wants sleep. It does make me wonder if I should take all the boys to the sleep doctor too, because none of them can sleep without medication. We'll see.

So for all these reasons, and more, my brain is totally fried this week. I feel like I need total cognitive and emotional rejuvenation, and I'm not sure how to get it. Alex said I should try the yoga class they offer at The Therapy Tree on Wednesday nights. Wednesday nights are our most stressful- after a full day of therapy, so I'm not sure that will happen, but it's a nice idea. 

Some times I wonder how much more my little old plate can handle. Enough already, I feel like yelling! I guess at times like these I go into autopilot mode- just rolling with the punches and trying to get through whatever craziness is coming next. I try not to think too much or feel too much, just do what needs to be done. I know things will even out and get better eventually. Maybe I should keep my thoughts from wondering into crazy territory...keep them in reality. It doesn't hurt to dream, but maybe I'll save my dreaming for a less stressful week.

SPD Revisited

Today I was reminded of how far our family has come in our special needs journey. I host a monthly support group for parents whose kids have Sensory Processing Disorder, and although I am not as on top of it as I should be some months, I'm always fulfilled when we have a meeting.

Today was no exception. I wasn't going to have a meeting today because there is so much going on with our own family, I hadn't gotten my act together to organize a meeting for other families. But then I heard there was a mom in the area who was really looking for support. She has a child who was just diagnosed with SPD and is overwhelmed. I decided to throw out an invite to our group over Facebook and have an impromptu meeting so that this new mom could have a place to find support and hope.

The mom came with her husband and two children. They were the only ones at the meeting, which is understandable since I slacked off and didn't plan farther in advance to have the meeting in the first place. (Sorry, group!) The family was a little late for our meeting, so I had time to reflect on some things as I waited for them. 

There have been other times when a family has come to our meetings, just having had a child diagnosed, and they are looking for answers and hope. I have handled these situations in the past, trying my best to give the parents a little bit of direction and hope for their future, and their child's future. Today, I don't know why, but I was a little nervous about meeting this new family. Since I've met newly diagnosed families before, I couldn't understand what the deal was. I sat there and tried to figure it out.

I finally realized that it was because it was just me at this meeting. And the new family. The family was coming to me for help today. For answers. I haven't been a practicing social worker for 10 years. I don't know all the new things that current social work professionals are up to speed on. I don't have any new-fangled research to back up my opinions or parenting techniques. All I do have is practice. Times four. I was nervous today because I was this new family's link to hope, one of their first experiences in this new SPD World that they have found themselves thrown into. What if I didn't have answers? What if I didn't know how to help them? I was a little worried. I decided all I could do was be honest with them.

The family came, and they were beautiful. We have not ever had a father come to one of our meetings. Grandmothers, aunts, moms, sisters, all sorts of female types come to our meetings, but dads are missing. I keep telling Alex he needs to invite all the papas over to chat about the Dad Experience of raising kids with special needs, because it is a uniquely different experience. 

Anyway, today a Daddy was there. The parents were wonderful, warm, supportive, caring, overwhelmed, scared, and worried. They had never heard of "SPD" before a few weeks ago. They thought they were bad parents because they couldn't discipline their child in a way that seemed effective to the outside world. They feel judged and alone. They are worried about their child's future. They're worried about their child being teased. They don't yet know how to navigate the educational system. They are intimidated by the books their doctor said they should read. They're trying to find an Occupational Therapist who takes their insurance. All the things that we all go through as we raise our special needs kids. 

I knew exactly what they were experiencing. I threw my heart around this family as they sat there, pouring out their worries to me- a stranger. They were so brave. They're so good. They're a team who support each other and love their children more than anything. I was reminded of how long it's been since I sat in my first SPD support meeting, bawling my eyes out because I was so overwhelmed and frazzled. We've come such a long long way since then. 

I guess I know more than I think I do, because I had an answer or suggestion for all of the family's questions. I was worried they would ask things I didn't have experience with, but I guess because I have four kids who all have different sensory issues, I could identify with all the questions this new family has. I was so relieved that they said it was helpful to talk with me. I was overwhelmed with gratitude that I could play a part of this family's journey into acceptance of their daughter's world.

Most of all, we parents just want hope. Hope that our kids will be ok and have a happy, healthy life. The father I met today asked about how SPD progresses as a child grows up, how it manifests itself in grownups. I explained that based on what I've read, things are a little easier as turn into adults. As adults, you can make choices about things you don't have control over as a child. As a grownup you can pick what career you want to work in. If you don't like noise, don't be a construction worker. As a grownup, you can choose to wear socks or not wear them. You can decide what flavor of toothpaste you like the best, and what kind of toothbrush you want to use. You can live in the kind of house you want to live in. You can have carpet in your home so you feel softness on your feet, or you can have hard wood floors so you can hear the 'click' your shoes make when you walk. You can choose when to go grocery shopping if you want to avoid crowds. There are just so many things that as adults you can make choices about so you can live the kind of life that makes you happy. 

I told this new family that their daughter has the best possible thing- a family that loves and supports her. Everything else will fall into place. They should have hope! When they start working with an OT, they will learn even more about their child, and how to help her navigate through things that stress her out. Things will get easier in some ways. Yes, you have to change your expectations because now you know your child has something to deal with that will make life different for her than you thought it would be. But it's just 'different'. Not worse or scary or hopeless. Just different. She can still be and do anything she wants, with her family's support. I told the parents that the road to accomplishing her goals may be different than they had thought it would be, but she can still accomplish anything she wants. SPD does not limit you. It just means you may take a different path to get to your destination.

Talking with this amazing family today made me just stop and think about my journey. I never thought I'd be able to talk about my kids' special needs without sobbing. I never thought I would know enough to be able to help other parents. I don't know everything, by any means, but I hope I can at least give other families hope. The dad I met today said that hope is the most important thing to him. Amen.

Penguin Stress

This week we had a consult with the oral surgeon who will remove 6 of Ben's teeth and 6 of Jonah's. Apparently there is nothing more the orthodontist can do to create more space in their mouths, so this is our last resort. The surgeon seemed great and I'm confident the boys are in good hands. 

Jonah, however, is understandably terrified. As I was checking out today at the surgeon's office, and making the appointment for the surgery, Jonah completely fell apart. I expected it to happen, just not until we got to the car. He just couldn't hold it in any longer. He turned white, started crying, panicking and hyperventilating. True panic attack stuff. Poor guy. I tried to calm him down as best I could while finishing the business part of checking out as fast as I could. 

We managed to get to the car and on the ride home I tried to calm Jonah's nerves. Didn't really succeed, but I tried. We're having the surgery on January 29th, and Jonah will be first in order to get it over with. The surgeon can do both boys' surgeries on the same day, so that is extremely helpful for our family logistics. One of Ben's teeth that will be pulled is actually wiggly right now, so on the way home I told him to try and get it out! Because if Ben pulls it, it's a free tooth removal. If the surgeon pulls it, we have to pay an arm and a leg for it. The surgeon told the boys that with all the teeth they'll lose that one day, they might be able to buy a new car! Ha. Maybe a Matchbox car.

Even though I know Jonah is feeling extremely anxious about many things in his life right now, and wonders if he will ever feel better or "ok," this is how I know he will actually be fine.

Alex brought home a bunch of funny-shaped stress balls for the kids. Jonah got his favorite- a penguin. He has a whole collection of Everything Penguin. He took the stress ball to school the other day. 

When he came home from school, Jonah told me about a friend in his class who had been very upset about taking a test that day. The friend had been crying and just really freaking out. Jonah thought to himself that he knew how his friend felt, and offered his friend his brand new penguin stress ball as a gesture of compassion.

I couldn't believe my son's empathy and concern for his friend, even in the midst of so many challenges of his own. Jonah showed me that even though he is struggling on many fronts, he has some incredible, important Secrets that are hidden under all the challenges he faces each day. Secret compassion for his friends who struggle. Secret love for his siblings. Secret courage to leave our home every morning and head off into the World of Anxiety. Secret willingness to help others in need. These secrets come to the surface whenever Jonah is able to shake off his struggles and remember who he really is. Jonah will always be who he has always been: a sweet, sweet, sensitive soul. 

Jonah's sensitivity is his greatest strength and the area that causes him the most pain. He feels things deeply and the world can get under his skin and suck out his Joy. But I know he will be ok. We're working to give him every tool possible to build his Invisible Armor Against Anxiety, so he can hold on to the joy that lives at the core of his spirit. 


I was so proud of Jonah for feeling sympathetic and compassionate for a fellow anxiety-sufferer, and for offering his friend a very special token of understanding. Even in the middle of his own pain, he recognizes others' needs and acts to change their pain. That's how I know my sweet boy will be ok.

Cooking Experiments

The elimination diet we've been on for three weeks (FODMAPS) has been quite an adventure. I've had to make school lunches every day- something I used to think would be the thing to break the camel's back- which has turned out to be something I can actually handle. Although yesterday my boys were very disappointed with their lunches. I just hadn't had time to go buy or make more gluten/dairy/bean flour- free bread, so I tried to sell the boys the amazing idea of bread-less sandwiches! Doesn't that sound fun and different? 

Yeah, not so much. The boys were less than thrilled. 

I've had to keep ahead of the day and have the ingredients to prepare breakfasts, lunches, and dinners from scratch. It's been fun to experiment with new recipes and bake things I've never tried before. Some recipes have been surprisingly tasty and other I've had to just toss because they were so terrible and my kids were about to go on strike rather than eat the stuff Mama was serving.

When Ella and I grocery shop, she'll ask if she can have the things we used to eat- donuts as a special treat, Fruit Loops, cookies...I'll say no, we can't get those things today. Then Ella will say "Oh, they're not on our DIET." She never knew that word until three weeks ago. Then she'll ask what a DIET is. I'll explain that it's the food you eat. She has been known to try to convince me during the past three weeks that McDonald's food is in fact on our diet. Hm, nice try, Little Turkey. Mama's not falling for that one.

Earlier this week, I was trying a new recipe for breaded chicken strips. The picture looked really tasty, the ingredients were all "safe" for our family, and I thought the kids would get a kick out of having chicken nuggets again. 

The recipe sucked. Totally and completely. It ended up to be this disgusting glob of blegh that I was trying to "dredge" chicken strips through. Whatever. I don't know who came up with this recipe or where they got the picture of their chicken, but mine turned out nothing like that. So I've got all this glop all over my hands, nothing about the recipe was working. 

Meanwhile...

Aidan decided to run around the house singing at the top of his lungs to annoy his brothers. Jonah was trying to do his homework and was having a meltdown about the noise level in the house and the fact that he couldn't remember how to do his math problems. And Ben was arguing with me loud enough for the neighbors to hear because I wouldn't take him to the store to buy his latest obsession- a plastic container to hold his favorite marble. Ella decided to draw with pen all over my favorite crochet pattern book. 

I tried very hard to remember that I love this "joyful chaos". 

Hm. Not all the time.

All I kept saying was "Guys! I need literally FIVE minutes to figure out what to do with this glop of gooey gunk that I'm supposed to make dinner with!! Five minutes!!" But no one else cared. That's the hardest part of this lifestyle, finding time to actually make everything from scratch while still being available for all the kids who need attention. "Wait five minutes" is not a direction that any of my kids have ever understood or been happy about. Waiting is more difficult for them than other typically-developing kids.

Needless to say, the chicken was a flop and I threw out the recipe. I knew I'd laugh with the memory of the Crazy Chicken Night, but getting through it was not so funny. Some nights when I'm exhausted and the kids still have homework and showers to get done, I just want to pop in a microwavable dinner or run through the McDonald's drive thru on our way home from an afternoon of therapies. 

But I know this diet is making a difference in how most of us feel, so we'll keep trying to stick with it. We're going to start "food challenges" over the next month to see how we respond to the foods that we've eliminated with this diet. So I'll keep trying new recipes. Some may work, some may not, but I'll keep experimenting. Hopefully the house won't be so chaotic during the rest of my cooking experiments!