Our story. My name is Loni. I was 28 when I had my son. I considered myself a "professional Aunty" with 8 nieces and 2 nephews. I was the last of my sisters to have a baby because I was afraid that having Anxiety could effect my child if I were to get pregnant. I let years pass carrying that fear until I met my husband online who gave me strength to look forward to a family and he soon after made the trip to see me where we planned our family. I was still afraid throughout my pregnancy but with the help of my Dr., my husband and my family I pushed that fear to the back of my mind. Towards my due date I was scared letting my fear take over I was sure that I was going to die giving birth. While everyone was excited I saw it as the end. I had a hard time holding back my fears for everyone to know what i was going through. This was exciting and happy time for them and they would never understand. Luckily my body took over and the only thoughts coming out of my head were to hurry up and have the baby so I would able to relax. At last I had my beautiful little Indian boy. I named him Makuyi Motsin which means Westwolf in Blackfeet. He stole my heart and all fears left when I held him in my arms. I enjoyed every minute of watching grow and learn more and more as time passed. Then around 6 months a new fear came to surface. He was not meeting his milestones. We asked our dr. but he told us it was normal and joked that we were lucky he's behind cause when they can move they get into more trouble. but soon after he was falling behind more milestones and not responding to his name or giving us eye contact. I searched for answers and replaced two pediatricians, got my sons ears and eyes checked along with brain MRI's, Genetic tests and anything else I could think of. I reached out for any help I could get and brought my son to Speech therapy and Physical therapy. They then added Occupational and Developmental therapy also. I got on a waiting list to see a pediatric special needs pediatrician. Finally when my son was 1year and a half we got into see her. Makuyi was then officially diagnosed with Autism. Some days are harder than others but now finally with a diagnosis we can learn to understand him and continue to overcome new fears and gain new strengths. My son is going to be 3 in April still doesn't speak or give much eye contact but has therapy 5 days a week and we have came so far from where he had been. He is showing so much progress. We are very proud of him and will continue to do everything in our power to give him the world.
Makuyi sounds beautiful...and blessed to have you. I have a high functioning daughter...there is a really great special needs forum here.Head over and introduce yourself...
Daughter of Him, Wife and Mother to them ,
One more on the way Fall 2013
Wow, he is beautiful. I am so glad you were able to overcome your fears and you are so involved in his care.
My son was delayed and had a lot of odd behaviors at age 2 1/2. We already had therapies in place for his delays but then we went to a psychologist who tested him and said he was borderline autistic. In my opinion, he was too young to be tested at age 2, since he couldn't talk. None of this other therapists agreed with the diagnosis. When his language finally did start to come in at age 3, he really took off. From age 5 on, he spoke like an adult...a mature, witty, sarcastic, high vocabulary adult. He still struggled in some areas, like fine and gross motor...but he is fine now after years of therapy. We saw 2 different developmental pediatricians when he was 4 and 5 and they both said no way to autism...they said dyspraxia. He did test high for Aspergers and ADD when he was 7..but the counselor who tested him said that could be his sensory issues combined with other delays causing those test results.
I hear him jumping up and down and flapping and screaming in his room right now and he's 10. He has been doing this daily since he was 4. At first, he didn't realize that it was awkward to others in public, but over time he did, and now he mostly does it when he is alone in his room, once or twice a day for 10 minutes or so. I honestly do not think he is autistic...he is just unique and has sensory issues. I had a lot of those issues as a child as well. I still walk on my toes when I am in socks or barefoot at home and I have some repetitive behaviors.
Unfortunately, my son started having symptoms of tics and or Tourrettes when he was 7 (I always had a feeling...he would make noises when he was 3-5). Now that he is older, his tics are isolated to his face and are very infrequent. His neurologist thinks he may be on the spectrum or PDD NOS due to his history of delays and since tics coincide with autism (and Tourrette's coincides with Asperger's). Then there's the other theory that he may have PANDAS from a strep infection or a similar condition from a different bacteria or virus. I've stopped obsessing over it since his symptoms are better now, but if they worsen, I may start looking into it again. Luckily, we have one of the worlds leading experts on PANDAS about an hour from where we live. We were going to participate in a study of hers, but his symptoms got better.
Just wanted to tell you a little about his journey. Your son, with your support, and all those therapies, will be OK. He will surprise you daily. My son was 8 when he was finally able to walk down a flight of stairs with alternating feet/legs (instead of one step at a time with both feet). Most children learn that by the time they are 4..and yes, we do have stairs in our house that he used multiple times daily! Everything will fall together.
Thank you for being so involved with your son...and yes, the diagnosis could be wrong, it could be right, and it could change throughout the years. I think 1 1/2 is too young to test for autism...unless the autism tests have changed since my son took them. I would re-test... until he is at least 7 or 8. Even without an autism diagnosis, I stayed connected to the autism community and got a lot of help from them. As far as early intervention and pre-school, I still got help from the state with "developmental delays" and "speech delays" as his diagnosis. I kept the autism label under the table, since he never fell in that borderline range on the CARS again. I never put it on his IEP, but I did mention it to his teachers off the record when he was in pre-k and kindergarten...just to let them know that he might still have some autistic behaviors and so we could be honest and open without having to label him just yet.
Thank you so much for sharing your story with me I love to hear them. I feel like i have some insight on things the more I hear and as time goes by with my son. I too will get him tested at a later date it does feel too soon for a test to conclude of autism. especially because he is not talking yet and has no siblings or other kids to be around. I am doing my best to conquer my fears more and more also. I am able to take him on walks now around the neighbor hood where a few months ago I was afraid to go outside. Not agoraphobic I don't think but mostly because I have never lived down south before and there are tons of huge spiders, scorpions and snakes outside =0/ anyway I face my fears and try to give him the world even if it takes the most out of me. I went to his school and asked to see their peck board systems and then went home and made my own so we can practice and hopefully he will be better prepared when he ventures off without mama. =0) Keep in touch and thank you again for your comments and time.
Hi Loni :)
My dd will stim a lot and can't handle any kind of drama in books or tv. I remember when we had an hour long melt down when I was reading them "Curious George" because monkeys should not be put in jail. Some days are better than others. There are lots of behaviors, but mostly she is an honest and true and funny kid.
We don't do any of the therapies, but I think they are wonderful. She did finally become potty trained at 6 years old 10 days after I began using this liquid stuff called "Behavior Balance". It has helped us a lot, though I don't give it to her as often as I should...and we still need to do laxatives some times.
I shared this here before, but this is an example of my daughters thought processes:
me: Sweetheart, go change your pants. You had an accident.
her: Nah, I'm fine.
me: You can't walk around with poop in your pants, its gross.
her: Its ok! I'm British!
Don't even ASK me how she jumped to that conclusion. Sometimes conversations are just like that with her.
Have you seen the movie "Temple Grandin"?
Definitely watch if you haven't.
I was in tears within the first 5 minutes because it was so much like loving a child with needs like our special peoples. That movie made me cry at the end too.
Daughter of Him, Wife and Mother to them ,
One more on the way Fall 2013
hello and welcome.
I have a daughter on the high functioning end of the autism spectrum, and she was just starting to speak a little when she turned 3. She is 16 and is a very quiet person. She is doing wonderfully in many ways.
I also recently started working as a teachers assistant in a school, helping children with special needs who are mainstreamed. I spend a big chunk of my day with a Native American little girl who is in 1st grade and on the autism spectrum. She is learning to read and write and get along with others, and she loves art.
Its wonderful that you have arranged for your son to get so much therapy as young. It really does help
but everything has pros and cons