 It was a awesome time in my life. I was 27 years old and in great health. But on a cold day in January 1996 I went into pre-labor early and ended up having Dakotah at 27 weeks. He weighed 2lbs 6.8 oz, was 13 inches long and see through. I was shocked, even though I worked in the medical field, I was not prepared for what I saw. Not to say what was to be before us in the future. He had several mile stones to reach, and eventually he did. We brought him home and seemed to thrive. He sat up on time, crawled on time, walked, and even had simple words like mama, dada, duck. He was a happy little boy and we felt very blessed that he was okay.
At 16 months old Dakotah received his MMR shot and for us it was a nightmare. My husband noticed it first, I guess I didn't want to believe that something was wrong so I ignored it. He said haven't you noticed that Dakotah isn't talking anymore, and he doesn't look at us anymore. We had his hearing checked to our amazement he heard fine, but he heard things 10 times more than we did, (sensory) so, he blocked us out, and that is when we knew something was terribly wrong. I started asking questions. A lot of questions. What, How, Can he get better? The news was the same, he would probably never get better. When Dakotah was diagnosed there was only 1- 10,000 with autism. We took him to a specialist that told us to just love him and take him and enjoy the time with him because he would never talk, or be a part of our world. That somehow he was brain damaged and by the time he turned 7 we would need to put him in a home for children. We didn't know where this conversation had went wrong, but as a mother and father of a beautiful little boy, we were livid. I think that that day was one of the coldest and most lonely days of your lives. I just cried like a baby. How could this have happened when he had beaten the odds and survived being a premmy and also walked through his mile stones with ease. Needless to say, my son didn't speak another word until he was 4 years old.
My heart was broken along with my spirit that year. I noticed that I was losing control of my son and our life. So, I decided to fight back. It was the greatest thing I've ever did.!
At the age of 2 Dakotah started becoming very behavioral. He would bit, scream, through things, break things. He was impulsive, couldn't speak, would rip, throw temper tantrums. Stare of in space for ever. I wanted my little boy back, but how!
I researched everything I could find. Yes, even the far fetched stuff, that everyone thinks you are crazy over, I had nothing to lose. We tried every drug known to man! (at the time) Even though now, I wished we wouldn't have. But you think you are doing the best for them, (at least that is what the doctors where telling us) Who know! With saying that, I have to say, the medication they put Dakotah on never 100% worked for him. He still had problems focusing, was still impulsive, and fell farther and farther behind.
By the age of 2/12 I had found a new doctor. She actually did a lot of good things for us and introduced us to many new programs and therapy's. At the time the only place nearest to us for Tomatis was in Bethesda MD. I signed up for it and was on a plane the next month. I was in for an adventure! My first day there with Dakotah was the hardest. Dakotah was non verbal, so this made it very hard on me. I had to feed him when I thought he needed to eat, bath, etc.
If you don't know about the Tomatis method, let me explain. First it is a method of many sensory stimulants that help the child to get past the fears and sensory issues that they have come to fear. To go back in time and into to fetal stage of life, and redirect the senses so that every little noise doesn't through them into a melt-down. To reverse them is a little harder said than done. We signed in, and it is for, 4 hours a day for 20 days the first set. They play music with head phones, and that, is wear it gets sticky. My son didn't want the head phones on. He threw his head back and nailed me right in the mouth. I wanted to scream out in pain. Here I was bleeding all over the place and he is having a fit, but they want you to ignore it. Hello! We are human, aren't we. After getting over the shock of it, and Dakotah getting used to the head phones it became easier over the next few hours. After we were done I actually felt okay with the process and couldn't wait to do it again the next day. The next day!!!!! Well it wasn't as bad as the first day but it was bad. I ask them if this was normal, (whatever normal is) and they smiled and said all cases are different, how many of us have heard that before. So it continued!
I decided to try and get Dakotah potty trained. We were in a hotel room that was no bigger then a bed and small bath, so every 30 minutes I put him on the toilet, and low and behold, he was potty trained when we flew out. It was a long 4 years! Praise God! Things happened so fast while we were there. He started talking, looking at us,singing songs,reading through books,playing on the mat,I put him on the phone with my husband and he said hi daddy, and my husband lost it for the first time, of course that made me lose it and we were all crying. When I look back, it was then that I knew I was seeing my son again for the first time. What an awesome thing. Dakotah went through the rest of the Tomatis series and it helped him a lot. We've done a lot of other therapy's such as OT, Speech, Physical Therapy, Behavioral Therapy, one on one with ABA's, Floor time, G&C free diet, Organic foods, Hypo therapy, swimming, light therapy. The newest one is the Inter Active Metronome, what an awesome therapy..I'll get to that in a little bit!
Dakotah attended public schools until the 1st grade, after that we had private (Mckay) He now attends Great Strides Rehabilation 1-1 for school and 1-1 on therapy's it is all combined. Finally it's all in one place. Dakotah is on task with his motor skills, riding a bike,swimming, running, he's all about showing off. In school, he is still behind in academics. He can read and write, but is below his age level. He try's very hard and that is all that matters to us.
Another really great therapy is the Inter Active Metronome, it consists of beats, based on music. The beat, with hand eye coordination, gets kids to track patterns and sequencing, using your hands then hands and feet and so on. It starts off easy, and gets harder and harder as the child learns and since he loves music, he is doing quite well with this therapy. I would advise any child that loves music to do this program. Or for children that are delayed in motor skills. It is a little hard at first, but Dakotah loves it now. He will sit in the back seat and tap away.
We see an array of therapist and doctors. They all help in their own special way and I truly thank God for all the help we have received from some of the very best people I've ever met. I was chosen to have a very special little boy, but my thanks to every person that devotes their time to children with special needs, because if not for them, we all would be lost.
I want to also say that, we have had many people and doctors say that Dakotah will, and would never achieve the goals that he has done, but my thought and words of advice to others is this; Don't ever let anyone tell you that your child can't do something, or that he, she will be handicapped forever. Forever is a long time in and in the last 12 years Dakotah has amazed us all at what he continues to achieve. One day soon I will walk back into that doctors office, that told me my son would be in a home by the time he was 7 and say, What do you have to say now!!!!!!!!!
Everyday, we strive for better, and some days are better than others, we still have not so good days, but then I look at my other children and say, the exact same thing!
A new little development over the last 6 months. My girlfriend asked me to try Mona Vie for Dakotah. I am always willing to try new things so we did. The results have been amazing. He is sleeping all night, his bowls have been perfect, our whole family hasn't been sick for over 6 months now.
I wish everyone well in health and hope this helps other family’s to see beyond black and white. Reach for the stars, they are out there, never lose hope!
If I can be of any help to other families please contact me.
Email address is toughii@comcast.net
Thank You
Carrie Hunter |
