I just want to say, I'm normally not a rude person. I will tell you like it is, but in general, I like to take the non-confrontational route. However, I'm finding that several well meaning people are just driving me insane.
Let me begin: My daughter Layla is a happy go lucky 2 year old girl. Curious, big blue eyes and bouncy, unruly, crazy blonde curls. She came into the world able to lift her head and look around. She hit all her developmental milestones early or on time, except when it came to talking. She was crawling by 4 months, standing by 5, cruising at 6, and walking at 9. She never babbled or made sounds, or responded to her name like my friends babies did, but her doctor said that due to her being on time or early with everything else; he was ok with waiting til her first birthday before getting concerned. At 13 months, her doctor sent her for hearing tests and ear check, and began the process to get her involved in speech therapy. Her results showed she had fluid buildup in her ears so badly that she was only hearing about 40-50% of what is being said. She had never had an ear infection or been sick a day in her life up til then, so we were sort of shocked. I say sort of, because we half expected her to have ear problems due to the fact that her father had tubes, constant infections, and eventually had to have his eardrum reconstructed due to his ears being so bad. I also have minor issues with fluid buildup in my ears during allergy season, and have to do a special routine to keep that at bay.
She had her tubes placed in May. Her hearing supposedly is up to normal standards. But she continued to not talk, ignore us, and she just is full of lots of quirks. But that is what makes her so special.
Her speech therapist claims she is above average in mostly everything, on time in everything else, and communication is .5%. But we were going to start getting that on track. Along with that, came the "autism" word. C and I had suspected Autism for awhile, and kept pushing some one to help us figure it out so we could get Layla the early intervention that she would need. But due to the fact that Layla is pretty social, and has a history of hitting her milestones early, no doctor wanted to investigate her quirks further, but we kept pushing. We knew something was off. Something wasn't right. We looked into autismspeaks.org, and found a list of individuals who were able to do an autism diagnosis in our area. I mentioned this to her speech therapist, who said she was also able to do the diagnosis/evaluation. So we went with that, but are waiting on final results as well. Last update: Her speech therapist is recommending an autism diagnosis, problem is, Layla easily adapts to situations and mimics well so they have to keep changing their findings because of how well she does!
The problem we are running into as parents are coming from the people nearest to us. We had to accept that something was wrong with Layla months ago, and accepting that allowed us to persue finding out and getting her treatment. Family and friends near us do not want to accept that fact, often stating
"Are you sure she can hear you? I don't think she can hear you. She can't be autistic, she just has hearing issues, I think."
"She's so smart though. Nothing is wrong with her."
"I'll pray she will be healed from all autism diagnosis"
"She's too social to be autistic"
"She loves to cuddle and snuggle, she can't have autism. Autistic kids don't like to be touched."
"She will grow out of it."
"She will talk when she is ready. Give it time."
I am so SICK of hearing these things. We had to accept autism as part of our daughter, why can't you? I'm not out there wearing "Autism Rocks my World" shirts and bumper stickers saying "My child has autism", because in fact, I hate the fact I have to deal with autism. I love my daughter with all of her quirks, and we have her in all the early intervention programs (speech, occupational), but I'm not about to claim I love autism, and that it rocks my world, or proclaim it to the entire world that my daughter is autistic (possibly). Its none of their business. The reason I'm not out there proclaiming all those things or "being proud" of It is because of people and their stupid questions and judgements, and often even more insensitive statements. I'm proud of my daughter as a person. I love her as a person, for who she is and what makes her who she is.
So, people can quit saying the 7 things above to me. Accept Layla for who she is. Keep your opinions to yourself. I don't want to discuss it with you, unless you have a medical degree. I don't want you to debate on whether or not my child is "normal". She isn't, and that's ok with us. We need it to be ok for you as well.
So, to answer your questions and statements above,
Yes, she can hear you. She can hear very well actually. She just wanders and doesn't respond to you when you call her name. Its a part of dealing with autism.
Autism (and any other special needs) does not mean "stupid", so yes, she is smart. She also is autistic.
You can pray for her all you like. We do as well. But rather than pray for her to be healed, pray for us, pray that we are shown how to help her and guide her and raise her properly. That is more important to me than making my child "normal". I love watching her wrap things into her hair for comfort, and the other quirky things she loves to do. So, while praying for her healing, pray for her as an individual as well. Accept her and her autism as well.
Yes, Layla loves to interact with our friends and play with other children. But you also have to understand, just because you've seen and heard about what one child is like with autism, You only met ONE child with autism. Everyone is different. Please keep this in mind.
Yes, Layla loves to be held, to snuggle, to cuddle, and to be kissed on. Again.. not every autistic child doesn't like to be touched.
While her speech therapist thinks that its possible Layla will score off the autism chart later on, I'm not getting my hopes up, just in case. And I'd really appreciate it if you didn't either. Thanks.
If Layla can do every other milestone early, She could talk. She's not talking. We want her in speech to help with this, to get her going. Instead of telling me "she's going to talk when she's ready", which now at this point makes me want to cry and punch you in the face, please don't say anything at all. Be proud that we took the steps to get her enrolled in speech and trying to help her get going. Many autistic children are non verbal. Do some research.
And finally, please. Please, please, just think before you speak! It is a sensitive subject for me and my husband to discuss with everyone. Be kind. Be sensitive. Be patient.
When Layla has a tantrum and a meltdown, don't judge. She is experiencing a sensory overload. So rather than shaking your damn heads and talking about our lack of parenting skills, how about walk a mile in my shoes, a mile in Layla's shoes even.. and offer support. Offer to dim the lights, find her blanket and monk monk that calm her down. Layla is a well behaved child, but certain situations just get to her. Please be understanding of this. No, I don't want your advice. No I don't want your judgement either. I want you to come up, hug me, and tell me I'm doing a good job, even when it looks like I have no control. I promise, there's a method to the madness. I just want to know Its going to be ok..and that I'm doing ok.
If you want to do research and learn more about autism, I recommend checking out www.autismspeaks.org
They have been an invaluable resource for us. Although everyday is a learning experience in our house, this website helps us understand just a little bit easier.
Thank you.
If you are reading this and think your child may be on the spectrum( including sensory processing disorders) and are interested in getting it further evaluated, or your child is "off" or behind in language and communication.. please don't hesitate, the earlier you seek help and get help, the better the outcome for your child because early intervention in the early years (while the brain is still developing) can help "retrain" your child's brain, giving them a better outcome later in life. We have had to fight for Layla to get this far, but not giving up and pushing for her to be further evaluated was what got others to finally notice what we did. You can't give up!
If you are needing help with speech or occupational therapies, check into early intervention programs in your area. In florida, early intervention is called Early Steps.
Early steps is federally funded and can pay for speech therapy and occupational therapy, or they can work with your insurance to waive your copays as well if you so choose. A doctor can refer you into the program, or you can contact them yourself and have your child evaluated.
Each state has a different name for their program, but it is worth looking into. Services can go from birth to age 3, and they help develop an IEP for school age kids after that time as well (and if it is needed).
Just google "early intervention in _________(your state here)__________" and see what pops up.
or http://www.autismspeaks.org/early-access-care/ei-state-info
For help finding an autism diagnosis or sensory diagnosis, check
Where to get an autism diagnosis by (your state) with autism speaks as well.
I hope this helps. :)
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment