Monday, December 21, 2009

This, That & A Whole Lotta Nothing

The kids are out of school now and things are very busy...& messy.
J&I have been busy with shopping, wrapping and preparing all the proper requirements for our new company to be up & running by the end of this week. Time has been limited and it all seems to be filled with nothing but good stuff.
Eme's language is exploding and she has the sweetest voice on earth. She is beginning to find the joy of books while pointing to each item and repeating what I say. Her favorite 2 words are, "Hi Mommy" or "Hi Daddy" melts my heart, because it's authentic and because I know how hard of a road she has traveled to 'get it'. She has come so far in such a short period of time that it even amazes me. She seeks out her Daddy to give him a night night hug & kiss. She runs to him at full speed when he comes home. She climbs in the bed after she wakes up to be snuggled by him and they lay there and whisper funny things and giggle, it is beauty beyond measure. My beautiful daughter had the most difficult year of all and she is the first one ready with a smile in the morning. Her heart is healing & is no longer in a million pieces. We are still cautious with her and have not let down our guard. All her needs are still met by Daddy & me. There is still no kissing or hugging from others and we've yet to leave her with anyone. Her weekend away from me was good for her to know that Mommy always comes back.
I have been dealing with a ridiculous 'professional' that I thought was a PT sent out by Ear*ly Steps after her evaluation, but after our 2nd session, I point blank asked her what her title is and found out she was an 'advocate' to help parents figure out the best way to help their child. I don't need her and she's wasting my time. I just don't know how to 'break up' with her. She's really nice and she loves coming here and has told me repeatedly that I am helping her to educate herself on Eme's needs. (???) Yea, you heard that right. She recognizes that Eme has a balance issue, but she doesn't quite understand the neurological connection of the things that Eme missed while living her first 15 months laying in a crib, being tied to a potty chair and the lack of stimulation. I just don't want to spend my time helping her become a better 'advocate.' It's just not what I need to do with my time. So how do you say that nicely to someone who really does want to help? I plan on seeking help from someone who specializes in what Eme needs in February. It's just I feel stressed out with this woman wasting valuable family time on something that she knows nothing about. Suggestions?
I gave my husband an early Christmas gift. It's actually an early Christmas gift, late Anniversary gift, a late & early Valentine's gift and a Happy Columbus Day gift.
It's a big a$$ tv that he's been wanting for 2 years. I gave it to him early so he could get it all set up before Christmas, but now we are in a pickle. The reason I never wanted to switch tv's was because I loved, LOVED, LOVED our Tommy Bahama entertainment center, but we had the biggest tv that would fit in there. So after all this time I finally caved and gave into his burning desire to upgrade the tv, only because we visited 2 friends this weekend and they both had found the same deal I did on the tv and they had it up and operating long before Christmas. J had a serious case of tv envy going on and I seriously thought he might just go get one himself. So I gave it to him early and the neighbors house that I was hiding it at was all to happy to get it out a week earlier=0) We moved the entertainment center out and discovered that we never painted the wall behind it. & now we have no more paint...& we don't even know the color. I have NO desire to paint the entire great room ever again, so maybe an accent wall will be our choice. But even with that, it requires painting and that was NOT in my plans to have done before Christmas. Ugh....just one more thing to add to the growing list of things that need to get done.
So J had tv envy & I caved into his desire to have a new tv and I have boobie envy. My friend just got her a brand new set and they are really pretty=0) I believe I might just be the last person on earth that is o'natural and I'm thinking my dh should consider taking care of my envy problem ;0)...chances are highly unlikely though.


Isabella's Mommy and Daddy said...

Sounds like things are going well..
Love that Emerson is doing sooo well.
maybe one day you can do a post or send out a list of things that you did on your journey.. I know you had some helping hands from ladies who have BTDT and I would so appriciate all the help in the bonding field.. especially since I will have to return to work..
Love the new tv.. and as for the boobie envy.. I am with you there.. I have wanted that for years...LOL..
Merry Christmas girly.. can't wait to see photos of the kids on Christmas morning.. especially little Eme's face..
Have a great week..

Half Gaelic, Half Garlic! said...

It is so good to hear how much Eme has progressed. It always amazes me how much these little ones can learn in such a short period of time.

I don't envy the position you are in with your PT.... I think that maybe honesty is the way with her. As much as you want to help her learn, you need to put your families needs first and you don't have the extra time to dedicate.

LOL about the boobs.....after the big tv, you never know, he might surprise you:)

Merry Christmas to you and your beautiful family!



Laurie said...

I agree, always best to be honest. I would just tell her that you've appreciate her kindness and she is a great "advocate", but your instincts tell you what E needs right now is PT or OT and that is all you have time for right now. I can't believe they didn't at least send you a PT assistant or someone with some medical training. Gesh!

Now you've got me wondering if C is the friend with the new boobies!lol

Is J starting a new business or did I misunderstand? Best of luck and keep us posted.

Enjoy this special holiday with your complete family...and when it's over don't forget some pics for your blog buddies! Merry Christmas.

A Beautiful Mess said...

You need to break up with the non-PT....Eme needs a a PT....Tell you new BFF that and tell her to go advocate for Eme and get the professional that she needs!

My boobies are real can't you tell by their lack of perkiness and likeness to fried eggs???

Liz and Ava said...

You will probably soon find out that on the road to heal our will need to FIRE! a whole lot of SO CALLED professionals along the way. If they don't have the time to listen to my concerns and at least try to see what I am seeing, and just brush me off as an over protective neurotic parent, well then they get the BRUSH! My limited free time is too precious to be wasting on them...can you sense anger and frustration here...well there is lots of it.
As I sat in the first child psychiatrist office I;ve ever been in and tryed to explain my concerns re my daughters attachment disorder and very likely PTSD, all the while my daughter spun around the room in a super hyper frensy like she was on speed. Could not maintain eye contact or sit still on my lap.
Only went to this appt on the encouragement of my GP...Had already told her that if the psychiatrist doesn't have experince with attachment disorder/trauma that she can actully do more harm than not seeing anyone....but told her(my GP)that I'd give it a try. Know what her report back to my GP was, that I looked to be clinically depressed and no comment on my daugher. I even left her a copy of the Van der Kolk paper on "Complex Developmental Trauma Disorder" and asked her to read it.
Anyone in the know, re attachment disorder/trauma knows up front that the parents are sure to present angry, depressed, frustrated, just in light of what they are dealing with and the fact that there are so few expereienced and knowledgable professionals out there for our kids special issues that can be so different from the main stream.
Follow your GUT!'s often right on. Be Polite, but I wouldn't worry about hurting feelings if you have to let the "pt" go.
Also if you are thinking of having a NR assessment in February be sure to not let any of the Physiotherapists "teach" Eme to crawl or creep on hands and knees. This is a BIG part of NR and teaching the child rather than having them integrate the crawl as they build the proper neurology defeats the purpose. They need to integrate this crawl without using the cortical part of the brain or being shown how to do it.
That was my big concern when I read in an early post that you were seeing a phyiotherapist for Eme.
All the best in your hunt for the best professionals to help your Eme.
From one Warrior MoM to another!

Tawni said...

hmmm...never had to break up with a PT before. Just do it quick like a band-aid.

So sweet that Em is talking! We're still waiting for the day when "ma" is not universal for everything and anything.

Congrats on the new tv...uh, I mean congrats to J:). I say new t.v. - new boobies is a totally fair trade. John bought me some last christmas, it fab, I no longer look like a 12 year old boy with my shirt off - or on *snort*

Lindsay said...

Sorry you didn't get what you were hoping for with the PT. Hope it works out for you. Perhaps you can ask her to suggest/recommend a physio/child specialist for you as you know it is not her area of expertise, but appreciate she will have connections! Flattery is always a useful tool :)

Hannah had horrible problems with balance - couldn't walk flat footed (her muscles kept contracting and raising her heel); couldn't even get her foot to stay flat for more than 3-5 seconds. She had hypertonus - very, very tense legs etc. She couldn't walk more than 5 steps without falling.

We thankfully ruled out cerebral palsy and also considered amniotic banding syndrome, although she had no strong physical signs. Since Emi has scarring perhaps you may want to investigate that possibility too? I firmly believe Hannah's physical difficulties were also strongly linked to emotional issues (her attachment disorder), coupled with many months of prolonged periods in a crib (pulled herself to stand from too young an age, damaging some of the physical development). I do think her extreme emotional tension caused physical symptoms/problems. Makes sense to me because I know when I am emotionally tense I feel muscles also tense up. And for our children, the tension/stress is of course much, much higher.

The good news is Hannah now walks perfectly normally. You would never guess there were problems or that I held such strong fears. Her balance/walking was so poor that I was fully expecting a diagnosis of CP - it was a definite miracle to hear it ruled out. I saw a huge improvement at the same time many aspects of her attachment disorder stabilised. We did other stuff to help with the physical needs. I'm going to write them below, incase they can help you and Emi.

We did massage to help the tension in her legs (they were so tense I would have problems bending her legs to get her clothes on sometimes); along with general all over massage, but really focusing with firm strokes and circular motions on the legs. Walking up hills to get her to walk with the correct heel-toe gait was recommended by our PT, and clear benefit could be seen. After her exercises at the physio they often put her feet into one of those foot massagers, which she liked, to help reduce muscle tension too. There were some exercises pulling and pushing her hips and joints into correct positions that I can't begin to describe; but were something we could do at home. Hopefully you can get a PT to assess Emi soon and show you something to help, if necessary. Orthopaedic shoes/sandles to hold the foot really, really helped. They have a much firmer sole so the foot can't flex into a wrong/imbalance position and because they come up over the heel it keeps the foot in the right position and stops them going over the ankle and falling. I saw an immediate improvement after putting Hannah in orthopaedic shoes. She wore ortho shoes & sandles for a long time - no trainers, crocs, etc and it was a big help. General store bought shoes - even ones that are pretty firm - are not as rigid as the ortho ones.

Best of luck getting some specialist help and I hope you see some good progress soon for your beautiful girl. I know it can be a worry, so I hope you get some good answers and help soon.

Jennifer in Miami said...

Sometimes I read your blog and think that we live in a parallel universe. I had to break up with 2 early step "PT's" and yes they were both nice but a collasal waste of time. Had the "unpainted walls" in 2 of our rooms when replacing televisions and just had boobs done last year. The pt's are contracted out through early steps, so there really isn't much accountability for them. On top of that they only help up until 3 years of age - so they focus on these "milestones" and never look at the big picture. My PT wanted to know why Addison wasn't walking at 12 months and also asked me if she could button a shirt. Is she freakin kidding me my 17 year old can barely button his own shirt. Email me if you have any questions about early steps or boobs......

Merry Christmas

simply t said...

Thanks Moms for all the PT advice! Interesting stuff. I do some of the at home therapies with Eme to strengthen her core, but I feel very confident that she needs NR therapy and that in itself will help correct many of the concerns I see in her. The problem with PT's are they access her ability to do things, not the quality. Which has been my biggest frustration with getting her help in the first place. They also are not educated with the NR aspect & I'm hoping with great confidence that our Feb appt will be just what she needs. Thanks again gals.

Also, it's so nice to know that you all have great boobies=0)...or fried eggs! Thanks for the visual Mare;0)