Monday, September 19, 2011

{Doing What is Best}


I've shared on here before about how Angela turned three and she aged out of her current Early Intervention program that was providing her with her therapeutic services like occupational therapy, physical therapy and speech.  Angela has now entered the educational system -- which right away bothers me, as my little girl is three years old. But that's just my opinion and a while other blog post.

Anyway, we have been introduced into the world of IEP and legal mumbo jumbo.  We had petitioned to keep Angela at home, since we are still trying to create a stable environment for her and better give her the feeling of permanency, not to mention she is rockin in her development and we see no need to change that! Angela was evaluated by our local intermediate unit and was found to need a certain level of services -- which I understand since she is indeed disabled.  I totally get her need for services.  What I do not get is that I have no say in how much services we as a family are willing to accept.  I was able to talk them down initially but they will not go any further.


If I may boast a little bit.  We do amazing things with Angela.  It's just our talent if you will.  Some people are artists, some good with numbers -- we rock out providing care for kids who need a bit extra.  We are creative and also have so many resources at the tip of our fingers if we need ideas and strategies.  I will be the first to admit that I need help with teaching Angela to walk and stand.  We are doing pretty good, but I don't fully understand how the body works and how high tone plays a role in taking steps and other random things like that.  So -- I really wanted PT for Angela through the IU but felt that all the rest was a waste of the Therapists, Angela's  and our families time, not to mention it takes her away from the biggest opportunity to develop -- living life!

Well, educational based services do not work like that.  If her IEP says she needs "x" number of hours per week of therapy she has to receive that -- no matter what we want.  We can't just pick PT and not take the entire package. Well, this package will not work for us.  I have nothing against services, but for Angela, at this time and in this family it's not gonna work.  However since we still want and need PT we are going to get her private PT most likely though CHOP.


Now with all this said I am fully aware that I can fight for what I feel is right.  But to me it's totally not worth it.  As a special needs momma, I will have my fair share of battles in the future.  I will pick and choose which ones are really important.  This one is not.  I need these people to like me cause in a year when Angela is ready for school I'm gonna ask for a lot.  A Lot. I need them to be on my side.

Angela continues to make progress in all areas.  She is standing and taking occasional steps with assistance, she is playing with lots of toys and has moved beyond the need for "sound" toys, but now is enjoying playing with blocks and other small toys.  She is putting objects "in" and "out" of a container and she is utilizing her ability to nod her head "yes" and "no" in very age appropriate ways. 

Love this girl to bits.  She is amazing -- so grateful to provide her with everything she needs -- and rest assure she will get everything she needs. Oh, and see that cute headband?  It's DNA! She is supporting her big brother as this week is Mito Awareness week.  Go learn more. Go buy a headband.


EHS Memory Page said...

I read your blog from time to time. You indeed have a gift from God. God Bless you!

Bellismom said...

I have been reading your blog on and off for quite some time. I don't think I have ever commented before but as a mother of a child with special needs, a daughter of a mother who has been a special ed teacher for 30 years, and being only a semester away from having my masters in special ed myself, I couldn't not say anything.

I completely respect that you are Angela's mother (and a darn good one from what I read here) and that it is your responsibility to make decisions for her and do what is best for her but I cannot believe that refusing services for any child is ever best. I understand where you are coming from in that you believe you do a great job with her and her development (and I'm not doubting that you do) but the more she gets the better off she will be. You may have a lot of really great ideas and you may be creative but just think of what might happen if she also get services from a teacher who is also creative and has a lot of great ideas that you haven't thought of. Teacher's have been doing this for years and they have a wealth of knowledge!

Anyway, please know I mean no disrespect and I think you do a great job with her! Special ed teachers would love to have more parents like you!

Karen Owens said...

@Belliesmom -- This is for our family -- realizing that each family is so different. I totally believe that a child can have too much therapy. More, in my opinion does not mean better. When we have to schedule time to fit all these therapist into our life we lose precious time living life -- going to the YMCA, participating in social activities. I guess after loosing a child we have a unique perspective in what is important for us as a family. We are only refusing services from the IU. Angela will still get PT and maybe OT or feeding in the future if we find a quality service provider.

Life experience is the best therapy for our family -- it's the best for Angela right now. This will change next year and as she gets older, but right now she is getting more than therapy could give her.

Again, like I said this is just my opinion. This is what works for our family. Other families this might not work for.

Lisa Marie said...

Karen- first off- LOVE your new blog format, it's beautiful!

I completely agree that a child can get too much therapy. I mean, that's just exhausting... if you did "every" therapy she was offered you'd be out driving from one thing to the next all day long, every day. You are such an incredible family and do an incredible job with her, I think that's why God gave her to you. Living life is therapy in itself like you said. I do not have a special needs child myself but I have a teaching degree and have dealt with so many IEPs, etc etc.

Just out of curiosity, WHY does Angela even need to be on the school radar? (Until she is 5?) I guess just due to the opportunity for early intervention services being provided for free by the school system? Just curious.

You should think and pray about homeschooling as well... what a blessing, you'd be able to teach her all she needs to know at home and just travel to and from OT, PT,
and other therapies you may need (since you'd be registered a "homeschool" family through the school.. I BELIEVE all those services still are available to you) but I could actually be wrong there, I haven't had to look into that myself so I don't know. I also haven't looked into special needs kids and services provided homeschooling families, but I'd be willing to bet a lot they are out there!

Anyway much continued love and prayers for your journey and all the many decisions you have to make, all the time! Angela has made such incredible progress it's just so beautiful to watch!

God bless and congrats :)

OH and LOVE her headband!!! have to get one!! haha

Karen Owens said...

@Lisa. Thanks! Essentially that is what we are going to do "homeschool preschool". Angela thrives around other kids so we really want to get her into typical preschool next year but right now she is just not ready. For now wenwill have lots of fun at the YMCA doing dance, preschool game time, swimming and lots of jumping on the trampoline with other kids her age -- sounds like fun to me!!

Phyllis said...

She is amazing! Doing the therapy at home was never a strength for us. We never did our homework, stretches etc so bravo to you for doing it all!

For us it is all about quality of life. We could make ourselves crazy going to every follow-up appt in a timely fashion with all 15 specialists we are supposed to be seeing but we do not. We pick and choose which ones are important for the boys. They could have all the best medical treatment in the world but it doesn't matter if we have no relationships with one another and our marriage is in shambles because of being overscheduled. Its all about balance which is what you are doing.

Karen Owens said...

@phyliss. LOL! So you saying you are the bad kid of the "therapy class". Obviously you are doing a great job because your kids look so happy!

Cristy said...

I wanted to introduce myself- I found your blog looking for info on mito many months back, but we have many things in common. Last year we adopted twins from China one of which we thought had severe CP. She has gone through the genetic muscle biopsy for mito, and we will get our results tomorrow. We are praying that she does not have mito, but either way, we are thankful the Lord blessed us with our JOYFUL little princess.

We have adopted 4 daughters from China and two are special needs. We are thankful that God has given us the ability to care for our four treasures, as well as our 2 grown sons.

I also wanted to THANK YOU for all the posts about equipment you have posted. The swim collar, and the high back bumbo are both on our radar as well as the arm for the ipad. I can't seem to find these wonderful inventions on my own, so I am thankful that you link each one.

As far as the therapies go, it is easy to think that the physical need is the main concern but I agree that these sweeties who have been waiting for their forever families really need Mommy and Daddy most of all. Good for you for knowing what Angela needs and making sure she gets it!!

Blessings to you,


Anonymous said...

I think it is important for Angela to have as much family time as possible as she continues to thrive and bond. I so have cherished all the time I have spent with Meya and was torn about all the time the specialists wanted her too as I knew how important building our bond and building her level of trust that we would meet all her needs. I got around the issue by insisting on homebound for one year (our pediatrician supported that request) and then we have had a year of preschool and now we have started kindergarten, but the time we have had at home and in our community as a family has been crucial to her development. I have felt we have tried to cram extra of everything in to make up for the time our girl was left alone and unstimulated. Just a sidenote, but today was our adoption day and she is finally and forever ours and now we can truly advocate without needing to go through an educational advocate (we had a phenomenal one).


Amy OTR said...

Being a pediatric OT for over 30 years, the mother of four and grammy of 6, I agree with your assessment that a child can be too "overbooked" with therapy. A child needs time to be a child. She especially needs time to bond and grow in her "forever" family. I work in early intervention and have great difficulty at times with families that seen to want an excess of therapy time, then not giving the child time to simply be a child. It takes time to process all that a little one learns in therapy. It takes free play time. So, do what you can with CHOP, and she can 'do" school next year!

jocalyn said...

totally agree with picking your battles. there most definitely will be plenty when she starts school.

one thing i've learned with kendall is to go with my gut. it hasn't failed me yet! i second guess myself but at the end of the day, i'm the mom making the decisions for my family! every child and every family is different.

besides, she is only three. (kendall started at three and it worked for us) but you have plenty of time :)

keep up the good work!

Anonymous said...

You have had so much success with Angela the last 10 month...don't change a thing. It is working!!

-Francine from CT

Glenda Watson Hyatt said...

I applaud you for standing up for what is best for Angela AND the family. Therapy for therapy's sake is pointless. Angela needs time to be a little girl, doing family things. Stick to your guns!

Karin W said...

Wow...we just went through a HORRIBLE IEP process the month before my son was born. Ugly, ugly, ugly. We ended up having 3 meetings, ending up with a total of 9 hours! The definition of the IEP team was a complete joke, as it seems the IEP team is made up of the administrators and little say from the parents. We too decided to keep Estelle home this year and accepted out of program services. So, in turn, I run around more than I already do. Estelle has 12 standing appointments per week. I often ask myself is this too much? But throwing her into a school that has no clue about CVI and little about her physical disabilities was not an option. We have since decided to put our home on the market to see if we can move to another area in Michigan that has VI schools where the teachers know exactly how to deal with CVI specifically and she can feel comfortable amongst her peers.
Karen, sorry I bombarding you with comments, but you have to realize how "exciting" it is to finally find someone with very similar issues and challenges. I feel very alone most of the time in my daily "fight" for our daughter.

Karen Owens said...

Karin - don't apologize! I love hearing about other families similar to ours! DO you have a website?

gradybunch said...

Hi, I have been lurking around reading about your wonderful family but not posting. Ive been reading in chronological order (from Gavin's first years) so I do hop you get an update saying I posted.

This blog about Angela walking and rhythm and sounds made me think about the Dateline special on Gabby Gifford. I was amazed that she made progress with walking with her PT WHEN THEY PLAYED MUSIC!! I think you should try this (if you already haven't) with Angela. If you did not see that special take a look at it . It may be worthwhile calling across country to talk to her physical therapists to find out more.

Good luck. And tell Madison that I think she is the bravest, most beautiful little girl I have ever read about (and undeniably Gavin looked EXACTLY like her so she will NEVER be able to forget. I think God planned it that way)!
Love, from Tampa, Florida