Let's see - Myles is three, and I haven't done an update for two years... Guess I haven't been doing the best at documenting, but I keep great mental notes! This is mainly for my records, but feel free to read if you'd like :)
Myles started at birth with Help Me Grow through Warren County. For three years, he recv'd two visits a month with an Intervention Specialist (Margaret... whom we loved!) as well as PT for about a year of that. Margaret became a friend and the kids loved her. She always came to our house, and it was a blessing to us. We also recv'd one visit a month with the caseworker from Help Me Grow.
At age three, all kids transition out of the Help Me Grow program, and, if you so choose, transition into the preschool within your school system. This was a huge jump for us b/c we've never done a lot of preschool with the kids, and we've never done preschool at age three.... w/ a kid who can't talk... or isn't potty-trained.... We both felt very hesitant going into it. But after seeking lots of counsel and talking with other parents of kids with special needs, we both felt confident we wanted to explore this opportunity always knowing that we could change direction at any time. So Help Me Grow met with the team at Springboro (city we live in) and we collaboratively wrote the IEP (Individualized Education Plan). This is the course of action that the team at his school and we, as parents, all agree upon... goals for him to achieve, etc. It's really a working document... can be changed or tweaked or adjusted at any time... and should always be supporting Myles' growth and development.
His team includes his preschool teacher, two classroom assistants, PT/OT, and a speech therapist. So far, we have been very happy with how things are going. He LOVES school! His face completely lights up if you do the sign for school or talk about his teacher. It's so adorable and he seems very happy! This has made the transition easier.
We did lots of private therapy over the past two years. We had a PT and speech therapist at Cinci Children's. We went to the campus near us for sessions, but it was a half hour each way (which I know isn't bad), but it's nice right now to have a break of that and know that he's getting all of it at school.
Myles is three years old and two months now. Things we're covering right now:
1. We just had a full speech eval at Children's. His comprehension was very encouraging (at a 2-yr old level), and while the verbal is still lacking much, we are confident he will make strides. There are a few words he will try to voice, but we still mostly sign for communication. The therapist at Children's said there are several possible speech disorders kids can have, but age three is too young to diagnose. They like give the child longer to progress before making any assumptions... and we are 100% fine with being watchful, but letting him progress for a few more years. So we'll just see how things unfold.
2. It is recommended that all kids with DS get a sleep study by age four b/c nearly 100% of kids with DS fall somewhere on the spectrum for sleep apnea. Our pediatrician, who is nothing short of amazing, decided that we'd first start with a oxygen saturation test which is much less invasive than an actual sleep study. We can actually do it at home. This will measure his blood oxygen levels overnight to see if it's lower than it should be... it will at least give us an indicator as to whether or not we need to do further testing at this time. We are scheduled to receive the equipment this Friday... hoping that we can make it work with Myles cooperation. Pretty sure this won't happen, but we are hopeful and are praying that we can get him hooked up
after he's asleep :)
3. We get his thyroid tested annually. In the beginning more regularly, but now down to once a year. Hypothyroidism is more common and can easily be missed.
4. His hearing is checked annually b/c it is very common to have hearing loss and this can develop at any time.
5. He got ankle braces about a year ago, and we just got those refitted. We have already seen improvement in his strength and the PT was very happy with how fast that progressed. So that was exciting!
Overall, Myles is a very pleasant kid :) While he does not do well with transitions or unfamiliar settings, once he gets down a routine, he is very predictable. He gets wild and freakishly LOUD when we're with new people, or in a new place, or out of routine, or over-stimulated... He will yell, cover his face or ears, lay face down on the floor, pace, etc. But we just try to embrace this as much as possible and talk him through it... use signs... verbally prep him as much as we can... and use a few techniques that seem to work for him, etc. It has definitely given us a new perspective on life, and we think much now about how we can make other families feel welcome and accepted when they have a child with special needs. My tendency is to want to explain it or give every detail as to why he's so loud or just remove him.... but I'm working hard at being comfortable with Myles and growing with him. And knowing that loving him for who he is will simply make life easier (mentally/emotionally) than trying to wish it to be different. And, Jonathan and I always try to maintain our sense of humor!!! :) This helps immensely!!!
We fully believe Myles is created to be an image-bearer of God. If God saves him, he can do that even with Down syndrome! So we do basically the same thing we do with all of our kids... watch, wait, pray, listen, come alongside, teach, learn, learn more, make mistakes, learn from those mistakes, ask questions, seek guidance, share with others, teach others, laugh, cry, laugh some more while we're crying, love, love and love some more and then cover all of it with XOXOXO!!!! And know that in the end, God knows ALL things, is working ALL the time, and has His watchful eye on us ALWAYS. We are so thankful to know that our God loves Myles far beyond what we ever could and can offer Myles more than we ever could... we trust in that, find our hope in that, and it's what keeps us pressing on.
Myles started at birth with Help Me Grow through Warren County. For three years, he recv'd two visits a month with an Intervention Specialist (Margaret... whom we loved!) as well as PT for about a year of that. Margaret became a friend and the kids loved her. She always came to our house, and it was a blessing to us. We also recv'd one visit a month with the caseworker from Help Me Grow.
We did lots of private therapy over the past two years. We had a PT and speech therapist at Cinci Children's. We went to the campus near us for sessions, but it was a half hour each way (which I know isn't bad), but it's nice right now to have a break of that and know that he's getting all of it at school.
Myles is three years old and two months now. Things we're covering right now:
4. His hearing is checked annually b/c it is very common to have hearing loss and this can develop at any time. 
