Good evening everyone!
I wanted to email everyone that we know with updates on Madison. There seems to be confusion and misinformation being sent around so I wanted to clear it up and put everyone on the same page.
First let me start by saying we appreciate EVERYONE's prayers, thoughts and support. Eric, Madison and I are extremely blessed to have such a loving family (that includes our friends). We know that the Lord is listening to the prayers...Madison has already begun to make dramatic changes!!!
For those who have not been told first hand or have not heard from us in a while...here is everything from the beginning:
When Madison was 18 months old we spoke with her doctor with some concerns regarding a lack of response to her name. Madison has always been a very musical and vocal child so this was a mystery to us. We were told by her doctor to just continue to work on it and we would readdress it at another time. At 20/21 months Madison went in for a none related doctor appointment. The nurse practitioner that we see every time we are in the office started talking to Madison and she was unresponsive to her name so she quietly observed Madison at the office for a 1/2 hour or so. She wanted to send Madison to a speech & hearing evaluation just to rule out anything serious.
Madison passed her hearing evaluation with flying colors! We never really suspected a hearing problem...she certainly knows how to talk (or at least sing) :)
Madison was evaluated at the Detroit Institute for Children by a Speech Pathologist. She was given a series or "tests" designed for her age group and did rather well considering the circumstances (small, extremely warm room, a stranger talking to her & an unfamiliar building). After the evaluation we were given the preliminary results - Madison was evaluated at a 10 month old speech level. This did not mean she could not speak...this meant she was not processing incoming communication and therefore not performing where a "typical" 21 month old should. We were told at that time that speech would be recommended as well as a neurological evaluation and occupational therapy evaluation. (During her speech consult Madison's eating habits were discussed. We mention her lack of interest - or almost fear - of a spoon...there was concern as to her distaste of pureed textures).
We had her neurological evaluation with what we were told was one of the top pediatric neuros in Michigan. Well I guess when you're that good you are allowed to be a rather rude man too... Madison has had a extreme fear of doctors since she was about 3 months old and she had her eyes probed. This doctor appointment was no different. She screamed hysterically and made the evaluation rather difficult. The doctor did what he could and basically said she was fine and we should come back next year to see him again. Eric and Madison went out to the car by this time and I asked the doctor...."So she looks fine but would you like to know ANYTHING about her at all?" I went on to tell him my concerns; lack of name response, her obsession of "groups" and grouping objects, her love of music and singing all day, her ability to engross herself into a book so deeply that nothing grabs her attention except closing the book and removing it from her site all together and her very strong distaste for any real physical contact. While to some these are just regular kids things and she is just as obsessive compulsive as the rest of the Crane woman are...but I knew we were dealing with something else.
After he asked me a series of questions he temporarily diagnosed her with PDD (Pervasive Developmental Disorders) - part of the Autism Spectrum Disorder.
This is actually the first item we want to clarify - Madison IS NOT autistic. She does fall JUST within the spectrum but if anyone spends more than 15 seconds around her it is obvious she is very very high functioning!
Back to Madison:
Her next evaluation was from the Woodhaven/Brownstown school district. The state of Michigan has a special education program designed specifically for children under the age of 3. They are required by law to evaluate your child IN YOUR HOME to see where they are delaying in developmental milestones. We had two woman come to our home about a month ago to meet with Madison, Eric and I. They asked many questions of us and observed Madison in play alone and interacted with her in that play. They gave directives to see if she would follow and allowed her to lead as well. Upon the conclusion of that evaluation we were again given a preliminary diagnosis. We were told that she does demonstrate some autistic characteristics but she is also very vocal and extremely active.
After the evaluation was "officially" tallied here is where Madison was charted.
- She is being officially diagnosed with ECDD (Early Childhood Developmental Delay) - since Autism is considered a "life long" disorder they are not quick to label a child with that. Not to mention she does not show the "true" autistic characteristics that just about everyone knows when they see an autistic child. We have been told in the future we will probably hear the words High Functioning Autistic / Asperger syndrome & PDD NOS (Pervasive Developmental Disorder Not Otherwise Specified). Only time will tell what her final diagnosis will be.
- At the time of evaluation she was measured at the social level of an 8 month old. This test is designed so that when you score 0 in two or more categories it automatically brings you to under the age of 1. After asking this to be clarified...her teacher said she knows Madison is more social than an 8 month old its just at that 1 hour snap shot of her life that's where the test results landed. She will be reevaluated in 6 months
- Madison's speech was "raised" to a 16 month old level. She was using many more words although she still was not following through on directive which falls into the speech & communication aspects of the evaluation.
- Her gross motor skills are that of a 3 yr old - she is certainly an active child :)
- Her fine motor skills were on the lower end, again due to her ability to follow specific directive
Lastly, she was recently evaluated with an Occupational Therapist regarding her "food sensory" and eating difficulties. Although she does not have trouble eating she is not eating from a spoon. She was diagnosed with dysphagia- which is basically a swallowing problem. She can swallow but we learned that there is a tightness in her mouth that is not allowing her to correctly use a spoon and also an open mouth cup (she is still using sippy cups only at this point). Also, her bottom lip is slightly lower than it should be & her mouth is slightly slanting to the right, so she is trying to over compensate her tongue to keep things in her mouth. She will begin OT to correct these problems. We have been told there are a series of mouth "exercises" I have to do for her (inside her mouth) 3-5 times a day. They are about 15 minutes each time...this is a very involved thing. We are told that it will be obvious if we are not doing her exercises. She will show signs of improvement but they could take as long as 8-12 weeks to see the first signs.
Madison is doing really well right now. She has the busiest schedule I have ever seen for a 2 year old. She is currently enrolled in :
- Private speech therapy 2 times a week (Mon & Wed 9:30-10)and
School 2 times a week (Tues & Fri 12:30-2:15) - Beginning in November she will add to her schedule Private OT (Mon & Wed 10:30-11:15)
- A private tutor at our home working one on one with directive (Tues & Friday before school)
We have told just about everyone in our family with the request of two main things...
1. PLEASE do not tell the children in the family. We don't want her to be labeled by her cousins and we really just don't want them to think she is "weird"
AND (the one I am most concerned about)
2. People talking about Madison in general. We know you all know (we told you), you all know that everyone knows...but we really ask that people don't sit around and talk about this. We know that no one would say anything ill willed about it - its just something Eric and I really would prefer not to have discussed without us. At the same time - and we hope this is not taken as rude, but we don't necessarily want to discuss it all the time either.
Obviously we cannot control what people say, think or do when it comes to any of this. At first we had no intentions of sharing any of this with anyone. The more I thought about it I realized...since no one knows, no one was praying. That was why I started sharing to begin with. I wanted a support system that I could have praying for Madison and all those who are involved in her treatment.
I know everyone cares for and loves Madison. Please know that we are praying for the Lord to heal her but know that the Lord is working with her and our family daily. She is not sick. She is not disabled...she is just finding social aspects a little more challenging than other people / children do.
I have prayed for weeks and months now that the Lord make me the mom she needs me to be right now. It was very hard to see just how self absorbed I really was. I still question if I am the right mom...but I know that the Lord would not have given Madison to me if I wasn't.
Eric has been my rock through this whole thing. Although in the beginning we did not see eye to eye on what we were seeing in Madison - once the evaluations started it all just fell right into place. As most of you know, I was in the hospital 2 weeks ago with 4 herniated disks...well this gave Eric an opportunity to spend 2 full days with Madison alone. HE DID AWESOME! They are two peas in a pod...sometimes its almost hard not to feel like the 3rd wheel with them. He has not only taken great care of me (we are lucky he was off for 3 weeks just when my back went out) but he has gotten so involved in Madison's school. He loves going to her class and working with her. He has been to every appointment so far and gets really excited about all of the things she has coming up. He has given me reasons to fall in love with him all over again!!!
I just want to end this very long email with another thanks to everyone! You, our family, have done more for us just by praying than any one doctor or teacher has done for Madison in her actual hands on treatment. While we know everyone has different views and opinions (and diagnosis') regarding Madison we want everyone to know that the Lord is leading our family on this path. We have HIM first and foremost in charge of her education and her well being. We know that right now she is right where the Lord wants her to be. He is speaking to us - loud and clear. We appreciate everyone's thoughts but please be rest assured...the Lord is in control here!!!! I know that I am so unworthy of trying to do this alone. He has put wonderful therapists, patient doctors and loving teachers in our lives...He has made sure we have all the best public and private care. We are lacking for nothing at this point and time. He has provided everything just as He says He will! PRAISE GOD!
Thank you all so much, please continue to pray. I will keep everyone updated as new evaluations take place. We love each and every one of you. If you have any questions - please just ask... we want to keep everyone as up to date as possible!
Love, The Behm Family
