My little superstar
2014 Walk for Apraxia
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ABA has begun
Luke started ABA a few weeks ago. His main therapist, Nolan, said he’s never had a kid with as strong of a skill set as Luke. And he’s breezed through the few weeks of sessions with ease. He gets annoyed but he complies, he is challenged so of course Mr. Stubborn must finish. Now they’re focusing on expressive. He’s been making more sounds, we already notice a change. He’s TRYING to talk more, which is amazing. I’m anxious to see where he is in a few months. He said “car” on his own in a sweet Boston accent. We are no longer taking him to OT. I’m sad about that, even though it was a huge pain in the ass logistically, and he really didn’t need it weekly anymore, the OT Carrie was the one that we started with when we were trying to get the right diagnosis. She really took him a long way and he likes her. So we are going to try to fit in a session every so often.
Preschool starts on Monday. We had his IEP, took him to the classroom, had him meet his teacher and speech therapist….Everything is great, really, he’s in a Structured Education Program so other kids with ASD, some verbal, some non verbal. But it’s school. He is starting school. I know it will be good for him but UGH.
He’s doing great with potty training. Still needs help with #2 but all good otherwise.
Halloween is coming up and I thought I’d get the least intrusive costumes, so Luke is supposed to be a hot dog and little sis a ketchup packet. He runs in terror when he sees the costume so I think I’ll have to change it to something where he doesn’t know he’s wearing a costume. Another reminder of having a kiddo like Luke and what they miss out on. He should be excited and looking forward to it, but is scared and wants to stay home. It’s so unfair. So much of his childhood so far has been so tough for him.
Little sis is saying about 20 words now. We should be happy but it’s more of a guilty feeling. Guilty for feeling happy. Sigh of relief and then guilt about being relieved rather than being happy. Guilty for being thankful that she’s not struggling like Luke.
I hate autism or whatever the hell he has.
Summer of 2014
Last time I wrote, we had just seen a pediatric neuro. Since then, we’ve seen a developmental therapist and even had the ADOS test. Same results. He doesn’t present as a child with autism, however he may eventually be diagnosed with a spectrum disorder. His apraxia is severe enough that it’s causing limitations on a lot of skills which could be misinterpreted as ASD. It’s going to be a “long, hard battle” but he will talk someday. That’s what they say….
I won’t lie. It’s really hard. Really, really hard. Other kids his age are having conversations and he can say about 4 words, and even those words aren’t clear. I am sure that others don’t even understand. On the bright side, receptively he’s doing great. He’s even somewhat potty trained. It took about 2 days only, he decided he wanted to do it himself and now he goes #1 in the potty all the time. #2….not sure how I’m going to get that going but hey, he conquered #1 in no time and I’m happy with that for now. We push him so hard, I’ll give him a bit of a break on that.
Luke’s little sis has become a wild child. She wants to do everything he does, she even banged her head for awhile because he did, so that was a fun stage. She turned 1 in June, is walking (on her own terms of course) and says a few words. Sadly she says as many as Luke, if not more. He loves her, she loves him, they chase each other around. I think since she’s become more mobile, Luke has been happier because he realizes she’s there to play with him. They’re really cute together.
It’s been recommended to us that Luke start pre-school and ABA. I don’t know which one terrifies me more. He will start school in October, we have the ABA consultation in a couple of weeks. The fact that he is unable to vocally express himself is causing more frustration and behavioral issues the older he gets. He know more and can’t express it, and it’s really tough on him. We started the picture exchange system and maybe that will help, but his patience is what may hinder that. I’m really anxious to see how he’ll do with ABA. I’m also anxious to see how we’ll pay for it.
This summer, the kids have been outside a ton, swings are their fave, Luke likes slides now and goes on his own. He jumps a lot now, thank you very much OT. Unfortunately we live in the midwest and the winters are brutal, so I’m really hoping there’s no regression from being in the house so much. I guess pre-school will help with that.
Luke does answer yes or no now, which helps tremendously with his frustration and patience. We ask a lot of questions, he’ll shake his head no or say “yeah”. I feel like he’s really come a long way in so many areas, but that stupid apraxia makes it so hard for him to do anything with his mouth.
This weekend we are taking him to see Thomas the Train in person…I hope he doesn’t hate it. I hate that I have to think that way, but it may be overwhelming. Hopefully he is in a good mood 🙂
Not Autism?
A few weeks after Luke was diagnosed with autism, he was not diagnosed with autism. HUH? That’s right. We saw a pediatric neurologist who has decades of experience who upon the moment of stepping into the room said that Luke has Apraxia of Speech, possibly Motor Apraxia and of course, Sensory Processing Disorder. He reviewed all of the medical records and therapy notes that I sent prior to our appointment which consisted of a packet thicker than an Encyclopedia and was “encouraged” by Luke’s receptive language. I will agree that Luke knows his stuff. He’s really a smarty pants.
After an hour and a half of questions and answers and of course me grilling the doctor on why he doesn’t think it’s autism, my husband and I (and Luke) walked out like a 1000 pound weight was lifted from our chest. Not that we’re 100% convinced it’s not autism but the doctor was so positive about Luke’s future that it somewhat gave us a sense of relief. He said that just because a kid has the same characteristics as someone with autism doesn’t mean he has autism. Luke does some weird things with his fingers, he crosses and uncrosses them, then looks at them in all different angles. He called this a stereotypy, basically saying that a lot of “normal” people have repeated movements like shaking their legs or tapping their fingers. In the couple months since the appointment, he has really decreased the frequency of this.
The neurologist sent us for an EEG to see if Luke is having seizures while he’s asleep causing the sleep disturbance. It came back normal, and coincidentally he has started sleeping better. It’s possible that when his little sister was born that it caused such a life altering disturbance to our sensory boy (one of our OT hates that name but hey, at least we make light of this shitty situation) that he had such anxiety that his sleep was just horrid. He still isn’t a fantastic sleeper and he still thrashes but overall, he’s doing so much better. Usually 10 hours a night, sometimes he wakes up briefly throughout the night, but it’s rare that he is up for several hours. The neuro did say that he’s seen kids in and out of disorders all through his career, hopefully Luke is out of the sleep disorder for good. Poor guy.
Bottom line, the neuro thinks he will catch up to his peers verbally around age 5. He said we need to continue the same therapy we’re doing now. He kept saying how encouraged he was in the receptive area and how Luke “wants” to communicate. He said his low muscle tone is only mild at this point. I attribute that to the trampoline in our living room. It’s seriously helped him so much. He also said that Sensory Integration Disorder (this is an old schooler) is “the real deal” meaning that it’s really tough. We couldn’t agree more.
So, again, walking out we felt so much better. Luke struggles, believe me, but hearing a neuro say all those positive things really has helped us. I’m not as psycho about everything like researching SPD, ASD, all of that on a daily basis. We still push him to do sensory activities like we previously did at home but his diet we are a bit more lax on. And you know what, it’s fine. My baby struggles enough so if he wants some pasta, so be it. He eats healthier than most adults I know so I feel good about it. Also, his sister is now one and he is realizing that she can play with him so slowly we’re getting to the point of him liking her. He actually laughs when she laughs now. Imagine that!
Next Tuesday we have an appointment with a developmental pediatrician. The neuro suggested it, we have had the appointment set for months. She will do a thorough screening on him. Who knows. Maybe she’ll say he’s on the spectrum. The main point is that we will have another professional opinion and see if any change in therapy is needed. That’s my top priority. Other than that, my boy is having a good summer, he has a pool, a water table and a sandbox. How’s that for sensory input?
Autism Awareness Month
How did we celebrate World Autism Awareness Day (April 2)? By getting diagnosed with Autism Spectrum Disorder (ASD)! Yeah!!!
Obviously this is extremely sarcastic.
A couple weeks ago we went to the ENT to discuss adenoid surgery. We waited 1.5 hours in the waiting room. Luke was thrilled. The ENT was very laid back about it saying “yeah we can do the surgery” but it didn’t seem like he felt Luke needed it. So I was frustrated at his lack of really giving a crap and it was showing by the fact that I was 0.02 seconds away from crying, and I asked “Does he actually need the surgery? We just need to know if you’re going to do an unnecessary surgery or what your plan is.” Hubs immediately jumped in and said “We feel like we’re being bounced back between doctors and no one is figuring out what’s really wrong.”
The ENT has probably one of the most important jobs on the planet – he operates on kids with tumors. So yes, I understand that adenoid surgery is not a big deal for him but this is my baby that we’re talking about. He clearly sensed the frustration and began asking a lot of questions about therapy, what other symptoms Luke has, what happened at birth, etc. and finally point blank said “He needs to see a neurologist and get the correct diagnosis. I can do surgery but it’s not going to help.” FINALLY. Finally a doctor who can say that something more is wrong than a slightly enlarged adenoid. Don’t get me wrong, it was extremely difficult to hear, but needed to be said.
I called the sleep doctor and left a message saying exactly this. His nurse called back saying that he wanted Luke to take Zyrtec, which opens the airway. We are not giving him medicine for no reason. I talked to my husband and pediatrician who both agreed. I called the sleep doctor back and said this, along with saying that I need the correct dosage of melatonin because we’re giving Luke that immediately. Quick call back, correct dosage, started that night. After 2 weeks of this, it doesn’t help at all. Well it somewhat helps him fall asleep faster but that’s not the issue. He’s still waking up several times a night and/or for long periods at a time.
Last week, April 2, 2014, was his 2.5 year well child check up. We do like his pediatrician a lot, she was the one who recognized that he has sensory issues. She is pretty good at following up, I’d say our one complaint is that she’s not proactive enough. If she were I’d probably complain about that though. She asked during the appointment what we thought about if it’s ASD and I said it depends on the day. Sometimes yes, but if he has a good night sleep he’s a different kid. His OT has really helped, motor skills are so improved, cognitively he’s at age level, receptive language at age level. We even talked about potty training soon. Then my husband said that Luke’s been doing these weird things with his fingers lately. He was doing it at the time so the doctor got to see. He crosses them all over each other and looks at them. So right when she saw that she said, “would it be helpful if I gave him the diagnosis today?” Meaning that with our health insurance not covering speech, is that what it would take. We agreed to it, and she said maybe when he’s 4 she’d take the diagnosis away, sometimes that happens, blah blah blah.
Next we discussed his sleep issues. Doctor said we need to ask for an MRI and EEG because she thinks Luke may be having nocturnal seizures. I did some research on this the week prior and thought that might be the case. If so, he’d have to take anti-seizure medicine. I think that it could be seizures. I don’t notice any during the day, but again I don’t know what to look for. At night though, it’s completely possible. Poor little guy. I just want to figure out what we can do to help him.
I can’t say I’m surprised about anything the doctor said, I think he does enough to where he can be considered on the spectrum. It certainly does help with insurance. I was surprised how I felt afterwards though. I didn’t cry, I wasn’t upset, I was sort of in a good mood. Weird huh? Not good as in I’m happy my child has autism, but happy that finally we’re getting somewhere other than he “just has sensory issues”. I don’t know, it’s such an overwhelming situation. We even went to the grocery store after and I said to my husband that we got the diagnosis on World Autism Day and he clearly already thought of that.
Part of me thinks that Luke has been regressing lately. I think it’s more of a plateau that he’s hit. He did so amazing right off the bat at OT but now I think he’s caught up as much as he can for now. His speech is still very worrisome, he’s only saying a few words and only when we ask him to. Part of me thinks he’s never going to talk. I just want to hear his sweet little voice.
The lesson learned here, push and push until you feel that you’re getting somewhere. All of our doctors so far have been wrong. Luke doesn’t need surgery. He doesn’t need to take medicine that won’t help him. I used to think that doctors knew everything!
Back to the ENT
We took Luke to his sleep doctor last week who advised us to immediately stop giving him Singulair as it was causing bad side effects – vomiting, diarrhea, increased irritability (that’s being nice), extreme head banging,…and the list goes on.
He advised us that the next step would be getting Luke’s adenoids removed. We’re really torn on this, the sleep study picked up snoring but he was asleep for less than 2 hours before I ended the study. His adenoids were “slightly enlarged” when the ENT looked at them through that terrible camera/tube. The husband and I agreed that we need to seek out several professional opinions before putting our baby under anesthesia. Sometimes I think his overnight issues are behavioral. Sometimes sensory. Sometimes biological. Yes, I think he has sleep terrors that may be caused by a blocked airway, keeping in mind that his hypotonia also plays a part in making his airway floppy. But what about the nights that it takes a hour and a half for him to fall asleep? He kicks, hits, cries, bangs his head, falls back into the wall, a true tantrum. This happens probably 3 times a week before bed. The fun times are when the husband is at work and I’m home alone praying to who knows who that little sis doesn’t wake up. Luke can really hurt himself, the way he throws himself around, so I can’t leave him alone when this is going on.
The sleep doctor says his “tantrums” are not tantrums but sleep terrors and are biological. He’s said twice already that they are not behavioral. We are concerned that Luke’s sensory issues aren’t being taken into account as much as they should. Today we’re going to hear what the ENT says, and then consult the sleep doctor again, and our pediatrician. Our big fear is that we put him through surgery and then there is no positive result.
Yesterday I told the hubs that I had to leave at 5:30am because I had to take an early train. Typically I drive to work and he stays home with the kids, and works nights. When we have doctors appointments or private therapy sessions I take the train so that we can just meet up prior to the appointment and ride home together. 5:30am is terrible, but my neighbor that I ride to work with had to go in early. Anyways, the response was “What do we have to do now?” I feel the same way and it’s only been 9 months since his diagnosis….
My brave little boy after finally falling asleep during the sleep study. Note to self, never put a sensory kid through a sleep study again.
How Terrible is Health Insurance in 2014?
I’ll tell you how terrible. I logged in probably 15 hours in the past 3 days just trying to get coverage for speech therapy in 2014. It’s March. That means that we’ve had close to 10 sessions already as Luke goes each Monday.
He has private OT and Speech, and it’s been several months where we’ve had no problem. Since my insurance company takes ages to get around to letting you know you’re not covered, I just found this out recently. I’ve spoken to 5 reps this week alone and 4 of the 5 have been extremely unhelpful, ignorant to what their own company offers, or have acted annoyed with me. Oh, I’m sorry to bother you.
I first called and was told that they don’t cover learning disabilities. Luke doesn’t have a learning disability. I was then told they don’t cover “just a speech delay”. Ok, my son is almost 2.5 and says zero words BUT used to say 10 words. That’s a speech regression, which is listed as being covered in your clinical policy bulletin 0648 that you can’t find on your own website.
I was told to have my provider resubmit everything under a different code, provided did, denied again. Called back the next day, same thing. Called back the next day, same thing.
Today I called and finally talked to a somewhat helpful rep that said our provider can send a medical necessity letter which will be “considered” for future visits. The appeal for the previous visits will be decided within 30 days.
What does this mean? That my son will not have his private speech therapy for at least a month. I’m sure longer, if ever again. If the previous visits are denied, I’m looking at $2000 out of pocket, and that’s just for the past couple months. We wouldn’t be able to afford future visits, sadly.
We have at home Early Intervention and to be completely honest, he does a lot better with his home speech therapist. He turns 3 in early October so once that happens, Early Intervention is over. That leaves 3 months with no speech therapy, potentially.
Unless he’s diagnosed with autism or another recognized neuro disorder, he will probably not be covered. The wait list for the developmental pediatrician who would diagnosis him is 6 months. Some days I think he may have ASD (Autism Spectrum Disorder), some days I think not. I know that there has been specific findings recently regarding SPD being its own disorder and it’s “in progress” but I challenge the people who make this decision to live with a kid with SPD for a week. Then tell me it’s not a disorder.
My health insurance is $400 more a month than it was in 2013 and I have less coverage. Makes a whole bunch of sense….
Sleep is overrated
I would like to slap anyone who has uttered these words.
I haven’t had a good night sleep in probably three years. No exaggeration. Luke slept well for just a few months of his life so far and during those months I was pregnant with little sis, so I wasn’t sleeping well.
We are currently in the worst phase in the history of his “sleep”. I put sleep in quotes because I don’t think he ever really sleeps.
Here is a typical night:
7pm – put little sis to bed, Luke plays in his room
7:10pm – Sis is out. Luke and I start the process of getting ready for bed. PJs, a couple books, teeth brushing, videos on mom’s phone
8pm – lay down in bed
8:01pm – fighting, fighting, more fighting, hitting, kicking, pulling hair, hitting more, head banging, getting out of bed to head bang, more hitting, thrashing
9pm – Luke is “asleep”
11pm – thrashing, hitting, kicking, crying, tantrums, head banging, arching backwards, standing up on the bed and falling backwards
1:30am – Luke is “asleep”
3am – moaning, crying, rolling around
3:15am – Luke is “asleep”
5:30am – Mom is up for the day
7:30am – Luke is up for the day
We’ve tried pretty much everything you can think of. Warm baths, warm milk, compression clothing, weighted blankets are out of the question because he won’t tolerate blankets, heavy work before bed, essential oils,….I won’t even go on because if you have a child that has sleep issues you already know what I’ve tried.
His Ear, Nose and Throat doctor stuck a camera up his nose and down his throat to find out that his tonsils look fine and his adenoids are slightly enlarged but not to the point of concern. His sleep study, which ended after a couple of hours because what sensory kid can stand being wrapped up with wires all over their body without having a complete meltdown, showed signs of snoring and sleep fragmentation. His sleep doctor recommended Singulair, which is what is given to people to prevent asthma attacks, to open his airway which he believes is blocked and causing sleep terrors. It’s been 2 weeks and we’ve seen no improvement. Give it a month. We’re always giving it a month.
The hubs works nights, so by the time he’s home and asleep it’s 1:30am. Little sis, who thankfully sleeps 12 hours straight most nights, is up at 7am so most of the time it’s mom dealing with Luke overnight. I have a full time job where I leave the house at 6:30am so if you take a look at the typical night above, you’ll see how much time I have to myself. So many people have said “I don’t know how you do it.” What choice do I have? My little boy has some major sleep issues, he can severely injure himself, of course I have to be up with him. I’m exhausted every second of every day. Every so often, I’ll sleep in the guest room while my husband sleeps with Luke. Even then I wake up a minimum of 3 times a night because I think someone is up crying. Or because I actually hear Luke crying or having a meltdown and I can’t bear to be in the other room not comforting my little man.
So for anyone who thinks sleep is overrated, I beg you to spend 1 week at my house.
sensory.overload 