The Feger Family est. 2012: Hope Haven Trip 6/5/17

My text is well below, I don't know how this happened but I don't have the energy to fix it.

This is the drive home, we were all VERY tired as you'll read about below.

This boy should be sleeping, but no, part-AY, he might be trying to poop

Morning photo

koo-koo boy

We made it to Hope Haven

museum

Lunch with daddy

more pics from the museum

more museum pics

Hope Haven Tour

I heard about Hope Haven from some dad at the park who has a son with DS and he is going to the school I used to teach at, so I know his teacher. In the 30 minute conversation we had, he spoke very highly of Hope Haven. I didn't think to ask specific questions but I wanted to find out for myself. It's very expensive, and a trip across the state was intimidating, when I thought I was going alone, but we scheduled anyway...back in Jan.

Everett failed his hearing test in Jan so I put off the trip because I wanted him to be able to hear with his new tubes before we went since the point is an assessment. When we rescheduled it took us to March. Then they had to cancel because they didn't have a speech therapist. That turned into mid-June, thankfully there was a cancellation because our apt was a day before surgery and I may have lost my mind doing it all. The other good news was the appointments were in the afternoon so I didn't drive up myself the day before but went the day of. I realized I couldn't drive myself because I couldn't get there and feed him and make it in time. Needless to say, it became a family trip and all went great.

My knowledge about Hope Haven was quite limited, so I wasn't really sure what to expect. I knew it was a school. I didn't know if it was necessary for us to go because we go to therapy A LOT and I always have goals for him, but I always appreciate second opinions, although I think we're doing everything we can for E. We have some LONG plateaus and it makes me nervous, so troubleshooting with others is great.

It was worth the trip. We hit the road at 6:45, I was nervous about being there on time, I thought we were going to take I4 and I was nervous about traffic. We didn't end up taking I-4 and we hit no traffic so we were there an hour early, which was fine, better than late. It took so long to get this appointment, I wasn't going to miss out. Both kids did great in the car both times, other than E didn't sleep more than 40 min. We were on a road that came to stops at lights and of course, without motion, he woke. He did so great even though he was so tired. We were there at 11:30 and our first appointment didn't start until 12:30, so we got a tour and then Andre and Clara left for their own adventures while we waited. Everett was already tired at 12:30, yikes.

We had PT first which was good so he had energy to move. She was pleased to see he had a gait trainer which is his walker, but saw my issues with getting him to use it. We changed the scenery and got him in the hall and that helped. She suggested flexible braces for his legs and feet since the ones we have are very hard and slip off when he crawls. I'll look into that tomorrow during PT with my regular lady. She didn't have too much new to add other than the braces. She did mentioned to use a hoola-hoop when he's standing up better on his own to get him to start taking steps and feeling stable with the hoop around us both.

Next we went to OT, each of the sessions were an hour. She did the typical "assessments" with the toys we are currently working hard at, but she helped me focus more on the sensory issues he has with his mouth right now. His oral defensiveness is preventing him from drinking from a cup, eating certain textures, and allowing me to use the oral tools to help with awareness and strength with his mouth. He chews fine, he's improving in speed with solid foods, but he needs more strength to pronounce certain sounds. She suggested brushing, joint compressions to help with body awareness and acceptance with hand over hand which is when I help his hands do things. He is very defensive with that as well so trying to teach him to bring the spoon to his mouth or how to slide the puzzle piece into the right hole is difficult since he gets so annoyed. We did do brushing with the first OT we saw, the OT we see now is so knowledgeable to I'm surprised she didn't suggest this for his defensiveness. I'm going to talk to her about it on Tuesday. She was pleased with how well he stayed on task, he was so tired by 1:30-2:30. He attempted every task she tried to get him to do and engaged with her well, that's called "joint attention". She said he makes very good eye contact, all the therapists mentioned his ability to be social, stay on task and be focused for so long. These are all things his therapists compliment him on at home too.

From 2:30-3:30 we had Education. Although Everett isn't in school, I learned a lot, I have a lot of questions about now and then. This time next year he'll be getting ready to go into PK-3 which is where Clara is going this year, I can't believe he's only a year after her. My heart, oh, thankfully I have one year from now to prepare myself for that day. Anyway, she asked if he had been to the dentist, nope, ha. That's one thing that doesn't have to do with DS so I've avoided it because A. He just turned 2 which I think is the right time to take a look, and B. he HATES opening his mouth, nothing about a dentist visit is going to go well at all. Needless to say, she gave me a pamphlet that provides services to those with DS, free if we didn't have insurance but she said to call and ask where a location is near us since they specialize with kids with special needs since he has terrible oral defensiveness. This gave me great relief because where I took Clara, they weren't patient with her and she was so well behaved I couldn't imagine how they'd deal with Everett. I was so worried when I saw how impatient they were with her and she was GREAT, I asked them what they do with children who do not listen and cooperate and she said they'll just check them, take a look?! I said, "Oh." knowing I wasn't ever going to take Everett there, but in my mind I wanted to ask, "Soooo, you never clean their teeth if they don't allow it?!' Clearly that's not true, but she didn't have a very good answer. I also learned something new and infuriating from the education portion about Early Steps, which is the program that follows all children that enter the NICU until they are caught up, or for Everett's sake, until they are three and go to school. So, we see Justine two times a week. She is an interventionist, NOT a therapist. She is great, we love her, but she doesn't have the education our therapists have so she came to me with important, basic knowledge and then I tell her what our therapist have us working on and she helps me check things off the list. She provides great ideas and helps me problem solve, and she loves Everett and Clara to pieces. I fought hard to have her two days a week over a year ago, indicating Everett needed more help. I was told when we left the NICU that I could get therapists in my home from Early Steps and when I asked they said, "No, we only have consults." Consults are when therapists come out once a month (max) and trouble shoot and help Everett's development. Getting consults take months to get, these people don't get back to me or Justine, they aren't getting paid sometimes, they come and go and it's a crap shoot. So, long story longer, when the Terri, in education from Hope Haven told me I could have had actual therapists ON TOP of having my interventionist twice a week come to my home once a week for an hour, EACH therapist. Yes, that means OT, PT, SPEECH language (not feeding) I almost fell out of my seat. I wanted to scream to the high heavens, WHY?!?!?!?!?!? would someone lie to me, why wouldn't Justine tell me? Why do people keep secrets to prevent children in need from getting help. I was discussed to say the least. I told Terri, "I've asked, they told me no." She said that is what everyone is told. The hours diving downtown, gas, dragging my kids out of bed...when I could have had all of this at home for the last two years?!?!?! I was most upset because now that I know this, I'll fight for this and get it, but now Clara will be going to school. I could have used this kind of help when I had her. I could have given her more attention, not dragged her out of the house to therapy, she could have slept in so many mornings, she could have been playing with her toys, so many "could haves" running through my head. Anyway, my "stay positive" voice scrambled to the front of my brain and reminded me the relationships I have with the therapists we have and how much they've helped us. Maybe I would have gone crazy being home?! (Probably not, that would have left time for taking Clara to the park. UGH, still annoys me when I try to be positive.) So, anyway, now I'm working on that, starting with speech first since that's only 30 minutes downtown so we travel double what half as long as the actual session lasts. By the time we get into her room, small talk because I like Amy (our speech therapist at All Children's), she is pregnant so we chat a bit, he gets maybe 20 minutes of therapy with 5 min of us chatting and then Clara interrupting. So, tomorrow I meet with the potential speech therapist from Early Steps in our HOME since we had this consult set up for two months and she could potentially be a therapist who comes to see us regularly for the next year. She also confirmed that I have say in if Everett goes into a self-contained class in school since I had someone (who should know) tell me that "I'm told" if he goes into self-contained, which takes him out of the general public education classroom and I was SURE there was a law against that, but I trusted the person that told me different. Terri (Hope Haven - sorry this is all over) told me, I am correct, it is a TEAM decision if he goes to self-contained and I have to be on board with it. I would like to think I'm a realist that would know if he would benefit from a special needs class, but I see the other side as a teacher and clearly am now way more sensitive to keeping special needs kids in the general education classroom. So, maybe I would push harder than I should, I don't know. Thankfully I have time to come to that conclusion if/when that time arises.

Finally, we had speech from 3:30-4:30 and he was DONE. He drank a bottle during the education portion and I hoped for a miracle thinking he might doze, but nope, wide awake. As overtired as one little Bub could be. So, he didn't "perform" as well as he typically would during speech, so we'll see how that shows in his report. She gave me great apps that are great for Clara and Everett. She was sweet and understanding with his tired ways, which wasn't much of anything other than needing to be busy on the floor, he couldn't be held and he wouldn't sit still. I learned we need to do more make-believe with him, he's not there developmentally yet but he did follow a few of her commands to feed the teddy bear and put the baby to sleep. She confirmed that just because he wasn't saying the "m" sound yet doesn't mean he is going to have speech issues later one, it's nice to hear that from as many people as I can hear it from, I'm so worried about speech. Having Clara first doesn't help much, She talked so early and has a ridiculous vocabulary, I have to remind myself she herself wasn't "typical".

Andre and Clara had gone to a hands-on museum down the road, they were going to go to a jump house but rested instead and then played on the playground at Hope Haven after their rest.

We left at about 4:45 and neither child slept on the way home. I thought FOR SURE Everett would have passed out in moments, but nope, my children are outcasts to rules like "run them ragged and they'll SLEEP" nope, neither one. My theory for my children is, "The more they sleep the more they sleep, the less they sleep the less they sleep" and it's true for me with both kiddies. The great news is we were ALL overtired so the car ride was pretty funny. We were all losing our minds. I have some footage. Everett is laughing so hard and so tired, his tongue, which he normally has great control over was too tired and more exposed than usual, I've only seen this from him when he was in the NICU and cried too long and it would hang from exhaustion. Thankfully, this time, it was from laughing at his mommy.

Daddy and sissy's "nap"