Posts Tagged ‘early intervention

30
Jul
13

Getting Started with EI: Developmental Intervention

Today we’ll have our first visit with our DI. She’s going to work on various things with D, and I’m excited about this meeting.

I have seen amazing changes in him just from the little bit of focus we’ve learned how to spend on some different things. I was really frightened about Early Intervention at first.

It made me feel like a failure that he’s requiring additional oversight, and it brought back all those old feelings from the start of our preemie journey. The actual experience has been very empowering. Even when I was stressed that he might not qualify after some areas of improvement were identified.

Last week, I had a huge set of meetings and projects at work so D spent a couple days with the “grandmas,” his Great Granny and my M-I-L. During that time, he had his first playdate with a little boy we know. This little boy and D had due dates within 3 days of each other. Drake is chronologically older by about 3 months. I had a rough weekend contemplating this conversations with my MIL. 

Me: So how did it go with, B?

MIL: They didn’t really spend much time together at the playground.

Me: Oh?

MIL: Well, B can run all over. D just can’t keep up.

Ouch, another one right in the preemie mama feels. Now I have to decide is more interaction with his peers a good idea? Do we hold back more and just concentrate on therapies for a while? He loves other kids, but I don’t want him steamrolled. I’m definitely having second thoughts about the 1-2 days of school we were planning on in the fall with other 18 month olds.

I think I’ll just plan on taking him on a tour when the year starts. If they have a spot left and being around the other kids goes ok, it’s meant to be. His pediatrician thinks healthwise it’s time to try him out. 

Preemie mama zen. I got this. 🙂

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26
Jul
13

Exciting Times

I love the point we have reached. We’ve received our six month EI plan. August appointments have been set for therapy and other follow ups.

It feels good to know what we have been working on well and what could be adjusted.

It is hard to deal with those who assume we weren’t doing things right when there really is no right or wrong with developmental delays.

We can’t answer when he’ll be “fine” or “caught up” whatever that means anyway. But the three of us and our therapy/medical team are doing our best. And we’re going to enjoy learning together.

15
Jul
13

Getting Started with EI: Routines

Our second in-home Early Intervention visit was this past Friday. They sent a prep sheet about our daily and weekly family routines.

I was curious about this meeting. Our family routines are the heartbeat of our daily/weekly/monthly life.

I wasn’t expecting how I’d feel at the end of our hour long interview. Drained.

Being asked to rate how your child’s medical conditions/behavior/gross motor & fine motor skills affect your daily life really starts to bring out the little issues. The ones you ignore day to day because you’re the mom and you would go to hell and back for that mini human.

The questions about my me time and when I get stuff done also caught me off-guard.

The one that kept me up Friday night was “What are your concerns for your child that worry you the most? What keeps you up at night?” Are you really sure you want to open that bag of worms, lady? I’m awesome at worrying something to bits. 🙂

I’m very happy with 9 preliminary “goals” that came out of the meeting. I think it will do a TON for D’s quality of life to start working on these things.

I learned how hard it really is to think that your care/teaching isn’t enough for your child. You would think that lesson would have been made abundantly clear to me in NICU days. I am by no means a “kid” expert. I didn’t babysit. My youngest sister is only 4.5 years younger. My only kid experience was being one. I really appreciated our coordinator taking the time to point out that I was doing great with him and his needing additional therapy was no reflection on my teaching/guiding abilities as a parent.

I’m still a little sad that this is all necessary for him, but I am hopeful that I will enjoy this team and our work together for D’s well being as much as I enjoy working with his NICU follow up and medical team.

Initial recommendation is PT twice a month and Speech/Feeding once a week for the next six months, and then a follow up evaluation to see how things are progressing. We also received a list of where he’s at with various development and some goals and exercises to work on ourselves.

Our next meeting is scheduled for the end of this week and it will be the “goal setting” meeting.

 

 

 

25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

12
Jun
13

Mommy Guilt: EI

There’s a lot of second guessing going on in my house right now. With D’s low birthweight and left c lubfoot, I could have tried to qualify him for early intervention services a long time ago. I asked the questions at his well visits and his first NICU follow up clinic, but since it wasn’t pushed very hard we opted to wait.

Of course, now I have to wonder if we waited too long and that extra year could have helped him. Despite his Neonatologist’s telling me that the work I’m doing with him has nothing to do with his low muscle tone and gross motor delays, I feel responsible.

His appointment for evaluation is set for Monday, so if anyone that’s done this dance before has any tips I’m all ears and eyes. 🙂

To add to the mommy guilt buffet, we went on a tour of his school for next year on Friday and Monday he came down with a yucky stomach virus. Fever, running at both ends, the whole nine yards. I know we’ve been taking him out in the world more after over a year of isolation and he could have picked it up anywhere, but way to make me second guess myself and his readiness universe!

Today, he is playing and resting much better, so I think we are through the worst of it. Just in time for our 2 days to Chicago with Daddy during a business trip next week. It will be our first overnight away as a family that isn’t at a hospital! We’re staying downtown and plan to take a tour of Wrigley Field, visit the Lincoln Park Zoo, walk on the shores of Lake Michigan, go to Navy Pier, and shop on  the Magnificent Mile. I can’t wait for our first big adventure!

 

 




Drake’s 3rd Birthday

February 20th, 2015

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