Can’t believe how long it’s been since I have posted. Wondering if someone’s nap will be cut short and this post won’t make it’s way out. Life has been so hectic, it’s hard to come up from air. Kind of a free for all post of what’s been going on…
My Sweet Baby G…
We saw the neurologist in April. He was impressed with her gross motor skills (as she was trying to tear his office apart) and said that she showed a great awareness for her surroundings and what was going on around her. We showed him a video of one of her staring spells and he immediately wanted her to have an EEG to look for seizures. He said that a one hour EEG couldn’t rule them out, but it might catch them. Well his 3-5 day request was a five week wait in reality. Poor baby, between sleep depriving her and then pinning her poor little self down as she fought us, screaming for help, so that they could place the electrodes on her for testing. She eventually fell asleep.
After a long five day wait we heard from the doctor that it was normal. His story changed a bit from our visit, and he didn’t feel the need to do a 24 hour test to truly make sure she wasn’t having them (versus just looking at a one hour time frame). Kind of the “looks good, good luck to you”. I was caught off guard, got off the phone and thought “we went to you for her delays, the seizure thing was just a piece of the puzzle”. Very frustrated.
Tomorrow we have a check up with her pediatrician. Think I will be getting a bit mama bear at this visit. It boggles my mind how doctors screen so closely for delays, but when they find them, even if they are severe, they don’t seem to really do anything other then hand you the number to Early Intervention. Early Intervention is great, but they do not diagnosis. I’m glad we are treating the symptoms, but I desperately want to do what I can to rule in or rule out what is going on. We may never find the answer, but for hells sake, can we at least attempt to find something???? We have a developmental ped appointment scheduled for October – which seems like a lifetime away. I just can’t imagine sitting back and waiting as another half of a year goes by. Those first three years matter so much, as the doctors tell us, well then someone needs to work with us in doing all we can before that window of time closes.
We have started two extra sessions of speech therapy a week, which is great. The therapist is awesome and extremely experienced in working with apraxia. She agrees with our other therapist that G appears to have apraxia and it most likely affects the motor planning for her limbs as well as for speech. This would explain why almost a year of sign language has resulted in almost no results. We also started OT, which is awesome – I think any two year old would love it.
Maybe apraxia is the end all be all diagnosis for G, but most people who work with her don’t think it is. There is something else. We all see a bright little girl who can problem solve extremely well and has an incredible memory, but appears to be trapped in herself. She tries desperately to communicate, and can’t. With the new therapist we have started to use the PECS with G. Right now it’s very simple – showing her two cards and asking which snack she wants, things like that. She seems to be figuring it out, but she’s so headstrong that as soon as she realizes she’s cooperating, she tends to change her tune. Good times!
I feel like we are at therapy all the time, and that’s good, but I’m tired. I wish we had more time for “normal” stuff for her, interacting with other kids, things like that. I just remind myself that we are doing our best.
And a very interesting piece of news – I spoke with her birth mother and her birth brother who is one year older than G is having the exact same issues. They are lined up to see the same types of specialists. He had a skull fracture when he was about 18 months, and many delays were attributed to that for a while. Well his parents knew that wasn’t adding up, and are now exploring all of the options like we are. One of the great things about open adoption – Birth Mom and I have open dialogue about these things, and are comparing notes and keeping each other up to date. We will find some answers for these kiddos.
My Mini Me Miss B…
She is doing great. Ready for the school year to end (well, the homework to be exact) and for the dance season to end. We’ve been a bit concerned with an increasing amount of anxiety involved with dancing this year – or more specifically – competing. That perfectionist side shines through and puts her into almost a panic before dances and during costume changes and switches into ruminating thoughts and nit picking everything she did when she comes off stage. Her last competition of the year was really hard, as this anxiety/panic seemed to hit hard, and it breaks my heart to see. This needs to be fun for her. Somehow she’s gone from a super confident dancer to one full of worry. She needs to enjoy this and she does, but the competition aspect needs some changes for next year. Think we will take a step back, work on perspective and try some new things.
On the wonderful side, she is so very happy with her friends at school and gets to spend a lot of time with her BFF outside of school. It makes me so incredibly happy that she’s found these girls who are truly peers. It may be the single most valuable aspect of moving to a self contained gifted program. I can accelerate work at home, but I can’t create a peer group the way this have. SO thankful.
And if that isn’t good enough, those friends have great parents. With G’s issues, I often find myself in situations where I can’t be where both girls needs me at the same time and I struggle with that. B was an only for seven years and I’m extremely close with her. B’s BFF just happens to have the most amazing parents who have welcomed her into their home and family and have stepped up to help us when both of us have had to be with G. Something as little as not being able to pick B up from school one day is hard for me, and for her. To have another set of parents who parent in a similar fashion, and who recognize how hard it is to let go even a little and trust someone with your child, step up and help out – it is simply beyond amazing. The further we go down this special needs parenting path, the fewer friends I find hanging around, and the more I value those who step in and insist on helping (knowing that anything less than insisting won’t do it). They are true gifts.
And What About Me…
I’m just along for the ride. Or wait, I think I’m driving this bus! I think every now and then I need to find a bus stop and get off, even if for a few minutes. I feel myself wearing down. I’ve sprained my shoulder and need physical therapy. I’m not sure how to make that happen with two kids and no child care, but am working on it. I think an hour or two a week on my own (being tortured) might be therapeutic in many ways. You just get on the hamster wheel and it goes so fast that it’s hard to stop it, even if you know you need to. I can’t recall the last time I had dinner with a friend and it’s been at least a year since my husband and I have gone to dinner. Ya do what ya gotta do (or something like that).
To wrap up on a more positive note, I am SO thankful for my other site, which I find so fulfilling both creatively and professionally. I’m excited for the opportunities it provides me. It’s beyond amazing. To be able to do the things I love the most.. baking, creating, writing, photography and eating (hey, let’s be honest) is a dream come true. Love it.
And nap time is over and school pick up near. Signing off!
Too much. I wouldn’t tell you to cut your mom off, because we both know that can’t happen. It’s a nice thought, but doesn’t work in reality (for either of us). <3 You have to be careful to make sure you take care of YOU, though. ((Hugs))
Wow. When it rains it pours.
Answers are coming, they’re out there. They’re just taking their danged time.
Hi, Christi! I emailed you a few weeks ago, but I am not sure if you received it. After reading your last two posts, I am convinced that we should compare notes. We have three children. The oldest one is on the advanced track, the middle one has special needs, and the youngest one is starting Kindergarten next year, but appears to be gifted on a creative level, which is different than the oldest, in many ways.
We have just now, after 7 years, discovered that our middle child has Childhood Apraxia of Speech and Dyspraxia. We have been going to doctors since he was 10 months old, trying to put together all of the pieces. We did the 1 hour EEG and the 72 hour EEG, both showed that his brain is perfect. We are still unclear as to why it took so long for someone to put it all together and do the appropriate testing. We have just made peace with it, believing that we found out now because it was when we were all ready to hear it and/or be prepared to take the huge therapy plunge.
I do understand your wanting to know answers so that you can get your sweet girl the best help possible. I certainly do not have all of the answers, but I would love to give you a listening ear if you ever need one.
My biggest piece of advice is to always go into any office prepared to be Momma Bear. It is not in my personality to be pushy or confrontational, but I have discovered that it sometimes takes that in order to get answers and results. We have continued to fight for our Ethan and to be his voice, and, because of that, we are finally getting some answers, some appropriate help, and some progress.
You sound like an amazing Momma, and your daughters are both very lucky to have you on their team.
I’m glad to see an update. I’ve been wondering how everything was going with both of the girls.
We have had bad luck with neurologists and sleep tests! The only real luck we have had with getting someone to diagnose and offer suggestions of how to help our kids, was with a child psychologist. Luckily, the guy we use not only specializes in Autism but also gifted kids so we were able to have both kids evaluated by the same guy.
You are a good daughter! Hang in there and don’t give up hope.
Christi-
I am so glad to see your post, I was hoping for better news, but I can completly relate, I feel as though I am at the end of my rope as well. My 2& 1/2 year old is in the early intervention program for speech and fine motor/sensory delays, although it took 5 months to get approval for services (that are free until the age of 3) I see improvemnt but I like you want answers, and want to know if this will be lifelong struggles or once he starts talking all will be ok? the answer I keep getting is no one knows, we have to wait and see…oh great cuz my type A personality and the planner (and plan B girl) really is great at that. Not to mention my husband who was laid off two years ago in June, and who has applied for anything and everything has gone on 100′s of interviews and nothing to show for it, we were barely scraping by with his Unemployment, and my paycheck (and I only get paid once a month) and then on May 8 we are told his Unemployment was terminated even though he supposedly had 26 weeks left…urgh..I have tried to keep a positive outlook and everything happens for a reason outlook for the last two years, but now I feel like will anything ever happen? it just feels like even though we are down, there is no end in sight. I am so sick of saying something will happen, when at this point I dont know that it will. Heres too being at the end of your rope and I guess tying a knot and holding on.