Preschool Times Two

July 5, 2016 by Emma Leave a comment

I deliberated and agonized over sending L to preschool in the fall. I sent G at 2.5 and he not only loved it, but flourished. He made friends, learned his alphabet and most colors. He fell in love with crafts.

He was also very clearly ready by the time we decided to enroll him at 22 months for the upcoming school year. He was talking in phrases, I was having conversations with him, he was already recognizing colors and a few letters.

L though. L has been consistently behind. At 24 months He was only just starting to understand things like “Put the [object] in the trash can” or “Bring me your coat.” He had only just reached his 50 word vocabulary. Color and letter recognition? Forget it.

When open enrollment began in January, just before L turned 2, I was torn between wanting to send him because it’s what we did with G and wanting to keep him home because he seemed to be at the same level as the 19 month-olds we stood with in the preschool line.

Around the same time, Early Intervention (EI) surprised me by bringing up preschool through the county. The program is for children who will be at least 2.5 by the end of September who have a 30% delay in one or more areas. It was free and L could receive speech services.

The thing was, L did seem delayed in speech and cognitive abilities, but he was progressing. His physical and developmental therapists didn’t think he’d qualify. Or, if he did, it would be by a very small margin.

Come April, we saw a huge leap in progression. L was saying more phrases on his own versus repeating them. He was starting to follow two step directions. He seemed more in line with where G was at 23 months.

It made me feel better about sending him to G’s preschool, so I enrolled him two days a week. We decided to meet with the educators in the public school system to see if L would even qualify. If he did, I could drop one of Ls days, and if he didn’t then he’d already have his days reserved.

We started the process with an optional meet-and-greet with the educators and L’s developmental therapist. Mr Boots and I got to ask questions and get a better feel for the program. Then we scheduled an observation meeting. Here, L played with the educators while they took notes and assessed his speech, vision, hearing, cognitive, behavior, fine and gross motor skills. It was very similar to the yearly review Early Intervention is required to do.

L blew us away with his ability to do puzzles (we don’t do enough of them) and matching physical objects to pictures in a book. There were some things he was able to do having only been showed once, proving he’s a very observant kid.

The biggest thing they were concerned about was his hearing. Apparently L only turned his head once when they went through their list of noises to make. Since we had an appointment with the ENT a week later and they didn’t receive the necessary paperwork from EI before the visit, they went ahead and scheduled us to come back for an official answer on L’s eligibility.

That meeting was last week. They received L’s paperwork from EI, which had determined he automatically qualified for another year with them due to atypical oral motor skills (his hypotonia is affecting his eating which is a health hazard). The ENT determined L’s hearing is fine, though due to the fact that his developmental therapist has concerns, it’s being monitored.

Both reports determined L’s fine and gross motor skill are age appropriate. It’s speech and cognitive that are a little behind, though not so delayed its a concern. The preschool educators determined L is at a 28% delay, which is borderline, but they couldn’t take him unless he had a 30% delay.

It was strange to be told, “He didn’t get in.” I wanted to be happy, but I was a little sad. I was hoping he’d get in so he could receive speech therapy on a weekly basis and it wouldn’t be a hard hit on our finances, as I’m guessing we’ll be going down the private therapy route once L ages out of EI.

But it’s a good thing. I am no longer stressing over whether or not to put my 2 year old on a school bus. I won’t have to figure out how to get two kids to and from two different schools 1-2 days week. L will still receive services through Early Intervention through January, so it’s not like we will be losing the help to keep him progressing. It sounds like here will be another review closer to then and if needed, we can try to get into the program then, if we want.

L is on the right track. He’s been sick over the last few days and it’s been great having him run up to me, point to his nose, and say, “Nonny, blow nose!” He even got mad at G for trying to climb into the swing set to slide down the slide, telling him, “No! You go swing!” There have been so many times this year I’ve been scared he wouldn’t be at this point by the time school started.

I’m happy we know where and when L will be attending school now. The decision has been made, there is. When someone asks, I no longer start with “We are waiting to see if…” I’m happy to know that he’s progressed enough in the last few months for me to finally feel comfortable putting him into the same school as G. I’m happy that L will get one of the same teachers as G, who is just as happy to have him in her class.

And the two mornings a week I will have to myself makes me smile too.

Switching Gears: From Physical Therapy to Speech Therapy

November 10, 2015 by Emma 4 Comments

When I told Ms Mary, L’s Early Intervention (EI) physical therapist, that the neurologist suggested physical therapy (PT) once a week to help with his low muscle tone (hypotonia), she rolled her eyes at the idea. We learned that if we supplement L’s PT with an outside provider, we wouldn’t be able to use the PT services EI provides. Even though she didn’t think L needed PT on a weekly basis, she said she’d be willing to do so if we felt he needed it.

At that same visit, Ms Mary noted that L’s response time when asked to perform certain tasks were delayed or it appeared he didn’t understand what she was asking him. I felt relief that someone else, someone outside our home, noticed what I have noticed for weeks. It didn’t help that G was jumping in to do everything for L either. She felt she had done all she could with L on speech and it was time to bring in a speech therapist.

Ms Mary told me that before her next visit I needed to figure out what we wanted her to do and if we wanted to start speech therapy.

I could see weekly physical therapy being a benefit, but I felt that if Ms Mary didn’t think it was necessary then we might not get the most out of her visits. Plus, it was getting harder to schedule visits with her since L’s nap schedule changed, she reduced her hours, and she was seeing additional patients while someone was out on maternity leave.

The idea of going to a physical therapist’s office was appealing; I could schedule those visits when G was in school. But I knew they wouldn’t do anything we couldn’t do at home. And for $60 a visit ($240 a month) that was NOT financially possible for us.

Then I thought, maybe I could enroll L in some sort of mommy-and-me class. Maybe gymnastics? Or soccer? I started researching what was available to us when G is in school. Some places required a $50 yearly membership fee, but even having to pay that, the cost of a session or monthly fee was less than $60, making it that an affordable alternative.

I laid everything out for Mr Boots, but lately he seems to think his opinion doesn’t count about these things. I’m the one who feels there’s a need for EI so apparently that means I have to make the decisions on where to go next. I told him my thoughts and he shrugged and basically told me I seemed to have it figured out, so why was I asking. Utterly unhelpful.

So, after a lot of agonizing, I decided on this: we would ask Ms Mary to come for a home visit once every month or two, because I wanted a fresh pair of eyes looking at L’s ankles since he is wearing the AFOs. I can’t tell if they’re making a difference, but I know she can. We’ll turn our focus from physical therapy to speech therapy, because I honestly can’t tell when L isn’t doing what we ask because he doesn’t feel like it or because he truly does not understand what we are asking. Finally, because I know children with low muscle tone need exercise to build muscle strength, I’d find a class for us to take, hopefully while G was in school.

At Ms Mary’s next visit, she surprised me by having our EI patient coordinator come with her. It worked out nicely because we had to rewrite L’s plan. Ms Mary was happy with what we (I) decided and even though she didn’t think she really needed to come back at all, she said she was more than happy to check out L’s ankles with fresh eyes. She is due to visit in December.

L will be seeing a speech therapist twice a month for the next three months, when we’ll reassess his progress. Scheduling those was a bit of a headache because of the holidays and the speech therapist is also covering patients for someone out on maternity leave. But luckily we were able to find dates that worked while G is in school. I’ve made it clear that G cannot be here for them as much as possible because he wants to be the center of attention and will do things for L. Plus, I’ve realized that L does a lot better when his environment is quiet and he can focus better. If it’s just us and the therapist we might see a lot of progress in the next couple of months.

I’m hoping to have a mommy-and-me class chosen by the end of the month. We tried one gymnastics class for walkers – 3 year olds. I didn’t think too much of the age gap until we were there. Plus, the coach was more interested in chatting with the regular moms than engaging with L. I thought that as a potential client she would have at least tried to engage with L more. The second half of the class went fine (open gym) but the first half, which was structured and had a LOT of off-limits stuff, did not. I was also surprised at how much tumbling there was. It was fine for the closer-to-three year olds but I wasn’t sure about L doing it (he had no interest anyway).

We’re supposed to try a gymnastics class at another facility tomorrow, this one for 16-24 month olds. I’m hoping that being in a class with children closer in age will go better. If this doesn’t work out then I’ll be enrolling him in soccer. He enjoyed himself when he was allowed on the field before the classes G took over the summer. And I don’t think they’ll care as much if he runs off from the circle.

L Visits the Pediatric Neurologist

November 3, 2015 by Emma 2 Comments

Two nights before his appointment, I tried figuring out what to expect for the first visit to the pediatric neurologist. I couldn’t find information on my specific practice, but on forums many moms mentioned several forms, discussing milestones, child play time with the doctor, and an exam.

I wish I hadn’t thrown out the paper I had written down L’s milestone accomplishments and illnesses on for his first Early Intervention visit. I had a hard time rewriting that list.

Because the neurologist’s office was early in the morning and about 45 minutes away, G went to my in-laws for an overnight visit. I went back and forth on the necessity of this, especially because the boys had spent a weekend with them just two days prior, but in the end I think it worked out well. L and I had most of the day to ourselves and no distractions (his brother) meant I could focus on only him. He was trying to say more. I heard a few more words, not just sounds. By the end of the day I think I heard him say 10 words, the number that the pediatrician and physical therapist ideally wanted him to be able to say at 18 months.

We were early for our appointment, but were taken back quickly so a nurse could get L’s vitals and ask Mr Boots and I a few basic questions: Why are you here? Who is the pediatrician? How long has this been going on? We did have to wait a while for the neurologist. L spent a lot of that time waving to the other patients and flirting with the ladies at the reception desk.

I was a little surprised when a student doctor came in to do L’s initial assessment. He asked a few questions, but by now L was through with the neurologist office and wanted to leave. It was hard getting anyone to listen to what I had to say while L tried escaping or protested when we had to take off his shirt and shoes.

The neurologist came in and spent about 10 minutes with us. She asked if we understood why we were in her office and before I could answer, Mr Boots said, “I don’t know. It’s what the pediatrician wanted.” The doctor took that and ran with it, telling the student to type “Parents don’t understand why they are here” in L’s chart. I was livid. Mr Boots and I really haven’t agreed on what to do with L and he didn’t really agree with the neurologist visit, but I felt he could have at least let me answer that question myself. I did my best to get the point across that I understood and I was concerned with L’s language and slight developmental delays.

The neurologist thought L looked great. She wasn’t concerned with his vocabulary because he was within range and he’s a boy — boys can take longer than girls to start speaking. She recommended lab work to determine an underlying reason for his low muscle tone and that L go to physical therapy weekly. She said that she wanted L back for a follow up in January.

There weren’t any extensive health history forms. There wasn’t much playing either. We spent about 15 minutes with the student doctor and neurologist combined as we tried our best to tell them L’s story as he protested and they hung back to watch him walk around and play with their medical instruments.

I didn’t like the way the visit went — at all — but was happy to be leaving with orders for lab work: Creatine Kinase (CK), Thyroid (TSH), Karyotype (genetics screen), and complete blood count (CBC).

We decided to get the blood work done when we got back to town since G wasn’t with us and Mr Boots was around to help me entertain L, who was tired and hungry but wouldn’t really eat. We had a long wait here because the nurses had a question about one of the labs the doctor had written in on the request form. They had called the neurologist’s office for clarification but hadn’t received an answer. After a Google search they felt pretty confident they figured it out themselves, but told us if they heard back from the doctor and they were mistaken they’d call us to come in for another draw. Luckily we never received a call from them.

L had a great time flirting with the elderly patients as we waited. The only meltdowns he had were when Mr Boots left the room to use the restroom and when one nice lady kindly declined drinking from his sippy cup. He received many “ahh’s” and “what a cutie!” for both.

When it was his turn, L proved, once again, that he’s a champ at getting his blood drawn. Sure he cried, but he didn’t squirm or make it too hard on the nurses.

We are still waiting to hear back about his lab results. I’ve emailed and called, but haven’t received a response from our point of contact at the neurologist’s office. I remember being told that the pathology test of our first pregnancy could take about a month, so I’m hoping that the lack of communication stems from the genetic screening taking longer than the others. If everything comes back negative then hopefully I can start letting go of this feeling that something is wrong and start believing what everyone else is telling me: L is doing things on his own terms and timeline.

L Visits the Pediatric Orthopedist and AFOs

October 26, 2015 by Emma 2 Comments

At the suggestion of Ms Mary, I spoke with L’s pediatrician about seeing a pediatric orthopedist about his pronating ankles at his 18 month well visit. She agreed and also agreed with the specific doctor Ms Mary suggested. So in August we met with the pediatric orthopedist. They didn’t have any available appointments close by without a wait, so I opted to make the appointment in Richmond so the boys could be seen sooner.

I say boys because Mr Boots wanted G’s feet and ankles checked as well. His ankles pronate as well, but not as badly as L. I mentioned it to the pediatrician when G began walking, but she wasn’t concerned. Mr Boots wanted to make sure there really wasn’t anything to worry about.

We arrived at the busy orthopedist’s office and I was handed two sets of forms, a pen, and a pencil. One of the forms was a scan-tron. A scan-tron. I hadn’t seen one of those since college. I fought back tears as I filled out the medical history ones. Nothing makes the differences between my boys so glaringly obvious like forms about their infancy and the ages they reached milestones.

G was checked briefly. The doctor asked which one of us (me or Mr Boots) has an issue with turned in ankles. I sheepishly raised my hand. It’s the reason why I’ve had knee problems since middle school. The doctor didn’t seem too concerned with how G’s feet and ankles looked, but said that if he starts wearing out his shoes on one side to bring him back in.

L got a couple more minutes with the doctor. He determined ankle-foot orthotics (AFOs) were a good idea and left the room. A nurse came back with the prescription for the orthotics and directions/info about the place to get them. When Mr Boots asked about a follow up appointment, we ended up having to find the doctor and stop him in the hallway to ask. He suggested six months. If L outgrows the AFOs before then, I have a feeling we’ll be back in his office for another prescription because I can’t see insurance paying for another pair without one. But for now we go back in March.

The next day I made L an appointment to get a fitting for his AFOs. It was one week later at 12 – lunch time. I cringed, but didn’t want to put the appointment off just to find something that would suit the boys’ schedule better. I made sure to bring snacks and also promised Burger King if G behaved himself.

Thankfully it wasn’t busy and the boys behaved pretty well. L didn’t like getting his feet measured. The tech surprised me by letting me choose the colors and patterns for the AFO’s. I didn’t like what they had to offer the boys, so settled on cammo with black Velcro.

We had a two week wait while the AFOs were made, and we were asked to make an appointment to pick them up. That ended up being G’s first day of school, which was perfect because Mr Boots would be able to come with me. If he had questions, he could ask them.

We arrived for pick up only to be told the AFOs weren’t in yet so I made an appointment for two days later. Thankfully they were in that day and I was able to pick them up as soon as I dropped G off at school.

Considering L wanted nothing to do with having his feet measured, he had no issues with the AFOs once they were on his feet. He slipped around when he tried walking on them and the tech said he’d need to wear his shoes whenever he had the AFOs on. I asked where to get shoes from and he wasn’t helpful. He couldn’t give me a suggestion other than some parents had good luck with Sketchers.

I posed the question to Facebook and two friends said Target brand shoes or Converse worked well for their students/patients. I wasn’t too keen on Converse, so I decided to make a Target run that weekend to see if I could have some luck there. We arrived and I couldn’t find any half sizes (L measured a 6.5). I found a pair of Teenage Mutant Ninja Turtle shoes in a 7 that lit up and G was insanely jealous of. Mr Boots didn’t like the way I struggled to get them on an off L’s feet with the AFOs, but I bought them anyway with the intention of asking Ms Mary what she thought.

She didn’t like them either 🙂 She told me to get New Balances. Not wanting to drag the boys to a shoe store, I opted to order a pair online. We had to wait a week for the New Balance shoes to arrive, so in the mean time I put one of G’s no-skid socks over L’s feet when he wore the AFOs to keep him from slip sliding all over.

New Balances come in regular, wide, and extra wide. I ordered L a 6.5 and a 7 in extra wide. The 6.5s were perfect and we’ll keep the 7s for when L’s feet grow again. We have a little trouble getting the Velcro to stay fastened, but overall they’ve worked very well. The Velcro isn’t an issue for us, but if it were I don’t think it would be much of an issue to sew a piece on to make the strap longer.

We’re about a month into using the AFOs. Ms Mary suggested starting off with L wearing them 15 minutes a day and gradually working up from there so he’s wearing them whenever he is awake. After a week L didn’t seem too bothered by them, so I left them on until lunch time. Yesterday he wore them about 8 hours straight; his longest stretch yet! I still can’t see a huge difference in his ankles when he isn’t wearing the AFOs, but I’m hoping that by having him wear them after his nap we’ll see a difference in another month or so.

Does your child wear AFOs or DAFOs? What shoes work best for them?

L’s Early Intervention Re-Assessment

September 9, 2015 by Emma Leave a comment

L had his Early Intervention reassessment a few weeks ago. Ms Mary arrived with one of the early intervention coordinators. I told Ms Mary that the pediatrician suggested seeing a neurologist and she immediately turned her nose up at the idea. She really doesn’t think L’s low tone is because of any kind of neurological issue.

I’ve been stressing out so much this summer about L’s abilities and lack-there-of that I broke down and started crying because sometimes I do think there is something else going on. I don’t know how to make this feeling go away. Although Ms Mary doesn’t think the neurologist appointment is necessary, I’ve decided not to cancel the one we have mid-October. I need to go to try and get peace of mind.

The ladies we’ve seen from Early Intervention have continually told me that L has been so busy working on walking skills that talking took a back seat. I know this is true; I’ve read it in numerous baby books and websites. But now that he can walk and run and climb, I’ve been waiting for that verbal explosion that G already had by now.

Ms Mary and the coordinator determined L surpassed his motor skills goals and asked me what I wanted to do next.

I really had no idea; it took me by surprise they even asked. I still had concerns with is pronating ankles and his stance widening as he ran. Ms Mary agreed, so she said she’d like to continue coming at least once a month, especially if the orthopedist we were seeing the next week decided to put L in an ankle-foot orthosis (AFO). But since walking was really the only reason why I called early intervention in the first place, I didn’t know I could ask to continue after L met his goals.

Ms Mary and the coordinator asked me questions about L’s verbal skills. What words did he know? (I was still struggling to come up with 10 he used consistently.) Does he say Mommy or Daddy? (He has a word for Daddy but not Mommy; he only makes the “ma ma” sound when he sees me in the kitchen and wants food.) Can he follow a simple command? (Sometimes, but mostly he acts like he didn’t hear me speak in the first place).

During the visit Ms Mary pointed to a picture of a lion in a book and roared. She asked L to roar like a lion to see if he’d imitate her. He didn’t act interested but made the sound a few moments later. She wondered if there was a slight delay in processing information and made a note to keep an eye on that.

They suggested continuing early intervention but turn our attention more towards L’s verbal skills. They asked if I wanted Ms Mary to continue to work with us or if I wanted someone else to come in.

The thought of not having Ms Mary come back made me want to start crying again. I adore her. The boys really love her. She’s like a third grandmother and I really wasn’t ready to give her up. But I also knew she’s the type of person who doesn’t say no when she should. I made it as clear as I could that although I wanted Ms Mary to stick around, I didn’t want her to feel like she needed to continue if she was comfortable with where L was at motor skill- wise. She was brought in to be his physical therapist and if a speech therapist would be better, I was okay with moving on.

Ms Mary wasn’t ready to give us up either. She wanted to continue seeing L at least until he was comfortable in his AFOs and was willing to drop her visits from twice a month down to once a month. After some back and forth between herself and the coordinator, it was decided Ms Mary would continue coming twice a month and work with L on speech. She felt comfortable doing some basic exercises for a couple of months before reassessing again to see if a speech therapist needed to come in.

So it sounds like things will continue as they have been for the last few months. We’ll see Ms Mary every other week and reassess L’s progress in November. I’m hoping that the verbal explosion is coming soon. Maybe if he starts using more words I can relax. I vaguely remember relaxing more once G started speaking 🙂