Being a parent is hard, like really hard. Being a parent in this day and age with social media such as Instagram, Pinterest, and Facebook has parents constantly showing, comparing, and judging. The purpose of this blog is 1) an outlet for me–a place for me to share all of my feelings as I navigate this parenting thing–the good, the bad, and the ugly and 2) a place parents can go and not feel judged, not feel alone, and not feel like they can’t do anything right.
Until this point, there has been a lot of sharing of the grief, the hardships, the craziness that is this house. It was intentional. It was to allow parents to see we all have those days, have mistakes, grieve a diagnosis/regression, etc. Let me tell you though, I love this life and I love these kids! Through all the hard days, mistakes, & the grief/regressions there are VICTORIES!
“We say sometimes it’s like banging your head against the wall to get him to do something but You bang your head against the wall long enough you make a dent.”-Alex Gloudemans, Mr. Zoo Keeper
Some of our victories are typical ones for the age, some are special to Nolan as his autism has us taking a bit of a different path. Some are for us as parents, some are all them. We have tried and tried, given every day all we have got and here we are. It all goes in ebbs and flows. Hard days & struggles, BREAKTHROUGHS, hard days & struggles, etc. I can tell you though, those breakthroughs mean so much more when they have been earned. They also give us the hope and strength to keep going and ride out the waves until the next one comes.
This past week has been filled with a chunk of absolutely awesome and noticeable progress. Let me brag on this kid a minute.
Last Thursday Nolan had a fever. Every time he gets a fever, he vomits. Every time. He is terrified of vomiting and panics when he knows its coming. I have learned the sound of this cry/panic and I am now able to run and get him before complete disaster strikes. MOM victory. (It’s strange being so proud of yourself for this, but I love that I am getting to know my son’s ins and outs so well.) Since his language doesn’t allow him to share what hurts, if something hurts, etc we have to guess. Knowing we was taking him on our annual camping trip we decided it was best to get him checked out and if the fever was a virus we would ride it out and take care of him the best we could, if it was an infection we would treat accordingly. *Side note: my kids ALWAYS get sick on Wednesdays when Daddy is 2-10 and then need to be at the doctor or extra care on Thursdays when he works day shift and we have no extra child care. I am pretty sure every single time he was sick while I was working it was on a Thursday and I needed off.* I brought both kids to the doctors office. Nolan walked in on his own, sat in the waiting room chair, and stood up when I told him it was our turn. He walked into the room, sat in the chair, and onto the scale with ease. (I am pretty sure at this point he still thought we were there for Stella, we were there with Stella 3 Thursdays ago for an ear infection). Then it came time for his actual exam. He whimpered, but held still for the temp (big change for him!), he thought it tickled when he got his glands checked, and then it was time to look in his ears and throat. Our pediatrician is amazing and had me give Nolan a hug with him on my lap, then lay him back on my legs with his legs for Nolan’s head. He looked in Nolan’s ears which resulted in, again, whimpering but not crying (another big change after needing his ears irrigated many times last year). When it was time for mouth/throat, he clamped his teeth down and wasn’t letting doctor in. I gave it a try and said, “say ahhhhh.” You guys, he did! He opened his mouth and said ahhhh. It was shaky; he was scared, but he did it- 3 times. 3 ahhhhs. Then the doctor saw what he needed (Herpangina virus-blisters on the throat). I welled in tears of joy that he said ahhh (though scared-he trusted and responded to me) and we could get him the help he needed. Victory for Mommy and Nolan.
We headed out to our camping trip (Camping is a loose term. We have cabins with water and electric, but thats about it. We cook by grill or fire, bring everything with us, etc.) On our way there, Nolan started telling us “popsicle, popsicle, popsicle.” His throat was likely hurting and he wanted a popsicle. We went to Culvers, got him a shake and the Tylenol out of the back of the truck and we were able to continue. Nolan communication win. We arrive and get set up. We realized we only forgot can coozies and 7up but managed to have everything else. We had everything from Nolan’s crib mattress with the bed sock on it to enough diapers. Parent packing win. While on the trip, Nolan blew our mind. Sleeping through the night, allowing sunscreen to be applied, playing in the water (up to his neck-thats new!), kicking while on a raft (with a friend!) playing with friends in the bubbles, going on a lawn-mower sounding GIANT wagon ride, smiling for photos better, playing (actually playing) with toys, and tolerating all the senses that go with 8 kids 4 and under. Nolan win, parents win.
Upon returning home, Nolan continued to sleep like a champ. His listening skills are on point. He is smiley and happy. He was grunting like he was going potty so I picked him up and ran to the potty and sat him on it. He was scared and shaking a bit but with some hugs and the iPad, he calmed, sat and HE WENT POOPY ON THE POTTY! This was 2 days in a row. I dont think he knows really what is going on yet and he still doesn’t say when he needs to be changed, but not being scared and going on the potty is a great step in the right direction! Yay! Potty training, win! Naturally, Nolan do, Stella do, too!
Tuesday we babysat cousin Charles. He came with us on our family field trip. We started at Menominee Park with a picnic of chicken nuggets (Burger King don’t make him gag–apparently the current freezer kind we have does) which he ate like a champ. then we went on the train where Nolan waited in line very well and then and had fun on. After the train we went to the zoo. Nolan liked riding in the wagon but was more interested in the baby ducks and the otters than I have ever seen him interested in animals at the zoo. The success of the morning was exciting and exhilarating. Nolan win, parent win.
That should be enough for one day but then we went to Appleton’s Kids Week event at Doyle Park. We made the double stroller a triple (we weren’t sure how he would do if Charles was this close) and he rocked it! We first went behind the train (which sounded like a lawn mower so him going on it was a great job). Then he climbed through the blow up obstacle course with little apprehension. We visited the police car and he climbed right in and was even trying to figure out the buckle. Then when we went to the bounce house, he couldn’t wait to get in! (usually we pretty much put him in and hold the door close until he realizes he likes it). They said he could go and it was like watching the road runner his feet running in place before he took off! He smiled, laughed, and giggled through the whole thing! After getting out he went to the park and climbed up with ease and excitement. Finally, he walked by the pool and kept requesting water, slide. It was cool so we weren’t sure we were going to go, but upon his request (words!) we went. He walked right in and had a blast! All on his own he went in the water, he was going to his neck, putting his face in, walking on his hands (18″ water), rolling to his back and walking on his hands, going in the fountain, and even practicing jumping in! I don’t know where this kid came from but I am super excited! Nolan win, parents win.
Wednesday brought a ton of assessments. He had therapy as he usually did in the AM. Getting him to do “work” is meaning a bit of a stern voice from me, but he is responding to it so we are going to work with the ABA team to continue. Then Nolan was assessed by the school speech and autism specialist for data for his IEP. Again, a stern hand was needed, but he did respond well and got some work done. Nolan asked for cheese spontaneously. I got him a string cheese out and that was not right (communicated through whining). I quickly changed it out for shredded cheese and all was well. A break between appointments and the rain we went outside. While EAA is going on, there are many, many planes flying over. A plane flew over and Nolan immediately looked up, and tracked it with his eyes. We then had our lead therapist visit and we discussed having the more direct voice with doing therapy. We also discussed him picking between 2 choices of play, but playing is non-negotiable. I see this being beneficial for him. In attempting to demonstrate this, our lead gave Nolan a choice between magnet wall and bears. He didn’t pick so she did, she picked magnet wall. She was pulling the letters down saying their name: abcd and she went to tickle him and he said efg! Then she said hijk and stopped, and he filled in with lmnop! (My jaw is dropping at this point). She says qrs, he filles in tuv. She does w, he does x, she does y, he says and z! Apparently he knows his ABCs and I had no idea! He continued to do this through the night for me!!
Thursday I was woken up by daddy saying, “Stella don’t do that you are going to get hurt.” followed by a huge crash as the stand up mirror shattered. That was fun. Nolan slept through this process. When he woke half an hour later, smiling (Nolan is about as morning person as me–not a good one). That was exciting. Then after stealing all the peanut butter oreo filling out of 4 cookies, he brought me a water bottle and said “want water in it.” I couldn’t believe what I was hearing so I replied with, “what?!?” He pushed the water further into my hands and said “want water in it.” I am so freaking excited.
This has been in 7 days people. 7 days of amazing growth, changes, and communication. These milestones are small for many, but a huge deal for us! I am so proud of this little man!! When the growth inevitably takes a dip again, I look forward to a spike in progress like this one!