THE MYSTERY THAT IS AUTISM & HOW IT RELATES TO ME
When it comes to my children I like to write about the things that to do in my life to make me unbelievably happy. And believe me, there are many things that relate to my children that causes a smile to spread across my face.
I was going to keep this to myself. When it comes to my children, I am more so of a private person. I like to keep most negative things out of my blog, especially when it pertains to my children, but this could possible affect a big part of my life as well as my families life.
My two year old son Tooty (that’s his nickname, not his real name), has a lot of developmental delays.
He crawled later than what he was suppose to which made him walk later too. He’s not forming any words at all which means that his speech is behind a lot as well. He only started feeding himself about a month or two ago, which before he wouldn’t even hold anything in his hands besides his sippy cup. There are several different milestones that he isn’t reaching as well. All of this has had my husband and I worried for quite some time.
Today he has an evaluation to see if he might be autistic. This has me so worried because as a parent I place the blame on myself when ANYTHING goes wrong with any of my children. I think that that is only natural for parents to do. I have even more guilt because I cannot be there for his evalutation because I have to work. (All of my paid vacation, as well as unpaid vacation, is gone for the remainder of the year.) I feel less than qualifed to be his mother right now. (Even though I know that those feeling are over dramatic, I still can’t help to feel what I feel.)
I have been doing SO much research on both autism and developmental delays that I feel as if my brain is inundated with so much information. I just can’t process it right now.
If you have any resources, whether it be a blog, a website, a book or even another mother who knows anything about autism leave your tip/information in the comments.
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*hugs* Oh sweetheart. I know it’s purposeless to tell you not to blame yourself or that you shouldn’t feel bad about having to work… I know that you can’t help either one of those feelings, but it’s TRUE that there is nothing you should feel guilty about in either case.
I don’t know much about autism myself but I can tell you someone who does. Laura @ I Am the Glue has a teenage son who is autistic and she blogs about it regularly. She is the coordinator for the group of parents that meet about their autistic children at his school. She does endless research and can definitely point you to some awesome resources, I’m sure… in addition, she’s a great lady and could provide support as a fellow mom of a child with autism.
I LOVE YOU, SHYNEA!!! I know how easily you shut down and turn inward. Yes, you are a STRONG woman, but don’t forget that you have your friends. If you need me, you know I’m ALWAYS a phone call away.
On a sidenote, that picture of Tooty is freakin adorable
Dear Kat,
You always know how to choke me up. Seriously. I turn inward whenever I am faced with a hard time, decision or obstacle. I have ALWAYS been like that. NEVER leaning on others for support. ALWAYS trying to handle things on my own. After 26 years it’s a hard trait to break.
I will definitely check out Laura and her blog. Thank you for the link.
Take care and much love,
Shynea
Such is the burden of being a mother…shouldering all of the blame, even if you’re spread too thin or you just can’t be there. Let yourself off the hook because as Kat said, you have nothing to feel guilty about. Don’t turn inward..use the support of your husband/family/friends. Give yourself due credit for being a good mother. All your children are happy and healthy and they know that they have a mother who loves them.
Dear Mona,
The guilt is over taking me. I haven’t be able to function for WEEKS and other areas of my life are suffering. Thank you SO MUCH for your encouraging words. The few friends, such as yourself, that I have made on the internet ALWAYS give me the support that I need and the encouraging words that help me push on through to another day.
Take care,
Shynea
First of all, your little boy is adorable! Those big round eyes are to die for!
As a fellow mommy, I can identify with your feelings. I haven’t had to deal with anything as major as autism, but my little one had some metabolical issues for the first few weeks of his life. I broke down crying every time the nurses weighed him and he had lost even more weight. I felt horrible every time he had to have needles poked into his tiny arms for bloodwork (5 times in his first two weeks of life). At one point his pediatrician even mentioned the possibility of cystic fibrosis, which just paralyzed me with fear. I was so worried that the baby boy I had just fallen in love with would be taken right back away from me, or have serious problems that I couldn’t deal with.
If your little guy does have autism, or some other developmental issue, it is not your fault. As his mommy you are in a special position to make the most positive impact on his life, whatever it may be. You may feel helpless right now, but the impression I have of you based on what I have seen is that you can do anything you set your mind to. You strike me as the sort of person who moves full steam ahead with what you are passionate about, not stopping to consider whether you can or can’t do it. It is no coincidence if God has entrusted a special needs child to your care. He knows you can do it. I know autism is not something that any parent wishes for their child, but disabled children’s lives have value and meaning, and they can teach us “normal” people an awful lot about life. Whatever his special needs may be, I know he will feel happy and loved throughout his life with you as his mommy.
Dear Jennifer,
My throat got really tight when I read your comment. My son teaches me something on a daily basis. He truly showed me that I have unconditional love for my children, because there are times that I do struggle with learning how to teach/raise/discipline him. He amazes me constantly and as a mother I know you can relate when your child suffers from something that is beyond your control. Yet we still, secretly, blame ourselves.
Thank you SO much for your kind words.
Take care,
Shynea
My son was recently diagnosed with autism, and he had pretty much all the same symptoms you’ve described. He is 6 now. Still has speech/language/comprehension delays as well as “quirks” that someone with asperger’s autism has; collecting, sorting, etc.
When all this was new to me, I felt a lot like you. Sometimes I still do, but then I remember… Some of our world’s most intelligent people; those who have contributed great things to our society, probably did have autism. I can’t really articulate what I mean to say.. I had to stop thinking of my son as diseased; that his asperger’s autism was a burden, and start thinking of the gifts he has with it. He is the smartest kid in his class and shows a very strong intelligence for memory and math skills, above his grade level for sure. Perhaps he will go on to contribute great things.. perhaps the same with your little one. As long as they have people around them that love them and support them and let them know they have a gift and not a burden, I don’t see why not:)
Oh, and I forgot to mention.. This book made a world of difference for me and my family!!!!! Autism from an autistic adult’s perspective. It helped me understand my son’s view of the world so much better. Seriously. Seriously!
http://www.amazon.com/Way-See-Personal-Autism-Aspergers/dp/1932565728/ref=wl_it_dp_o?ie=UTF8&coliid=I2PKC59OZ3GGCR&colid=3A6G2LELSJBRY
Hugs to you. I know as a mom it is easy to look at ourselves however we are always the loudest advocates for your children no matter what. Kudos to you for doing your research this truly shows what a great mom you are. My cousin’s son was diagnosed with autism at the age of 2. He is now 13 and has made so much progress in terms of his social interaction skills. Fortunately for my cousin we live near the Children’s Hospital of Philadelphia so she was lucky to have this expertise so close to home. Her son is highly advanced in terms of his reading skills and very much an outgoing pre-teen. My cousin attributes a lot of his progress to two of her good friends with engaging him in discussions. He schools have also played a role as well. I was amazed at how engaging he was at Thanksgiving while he was filling me in on the Twilight series. I think what is most important is establishing a strong internal and external support network.
Whenever I think of autism outside of my family I always think of Holly Robinson Peete, she is a huge advocate for autism as her oldest son has autism. Her organization HollyRod4Kids may be another good resource for you via her site http://www.hollyrod.org.
Hi, I have a son that will be turning 15 in December who is Autistic. He has the type called Asperger’s Syndrome. These kids are genisis but lack social skills. He is a hypersensitive as well. We had to cut all the tags out of his close and his socks have to pull up to his knees.
He was diagnosed at the age of 3 with ADHD, then later OCD, ODD and mood disorders. This was all in 1997, AS became a diagnosis in 94. My son wasn’t diagnosed with Autism until 2007. It is good that you are catching this early is my point and the diagnosis has been around alot longer. There is a world of information out there with the internet more than I had. Also, check with your local board of education for parents meetings in your area for parents of autistic children. Of course, if this is his diagnosis.
I also have a daughter that is developmentally delayed. We are going thru the testing process now to find out what’s not connecting. She has had her EEG and starts her computer testing on the 16th.
I have been where you are if you need to talk you can shoot me an email.
If he winds up with a diagnosis you will need to get on top of the IEP’s for school when he starts and all that stuff. You will need to have the board of education involved from the get go. It helps in the long run.
Good Luck Sweetie.
hugs! I am sorry you have to go through this! I understand what you are going through, I have a daughter who has some develpomental delays and a son who has ADHD. As a mother it is not easily, but God will never give you more than you can bear. I read a poem about being the mother of a special needs child, the last part of the poem touched me the most. It said, ” God has made you strong, that is why he chose you to raise this child.” Believe me you will find all the joys in Tooty! He is so cute! You are not alone we are all here for you.
First of all a big hug your way. As a mom of two autistic boys, 7 and 9, i still remember the days when the whole journey began. But if your son turns out to be autistic, you will rise to the challenge. Not because its easy, but thats what we Moms do…Autism is not the end of the world. Our kids are so full of potential, they continue to amaze us….
Stay strong, Momma…I m wishing you guys all the best!!
embed this code and hear this story of recovery.If it doesn’t work, it is a story from cnn.com called Autism…a journey of recovery. Autism is very treatable and many parents have stories to share. Stay strong!!
Hi!
I have been following your website for a few months (which has been FANTASTIC in helping me and my family), and just read your post on your son Tooty-my heart is with you.
My daughter Naudia, who is turning 3 on the 17th of December was diagnosed on Dec. 1st with mild to moderate Autism. Although we suspected in for the past few months, to hear the words just turned our world upside down-but we’re gaining our footing again with a different perspective on life. She is a gift, our “sunshine”, and just like Tooty, was sent as a blessing and for a reason. We have decided to do all we can to help her in any way we can.
Tooty may just be a late bloomer; he may have developmental delays; he may have Autism. But none of these are his true essence, and don’t have any reflection on you and his Dad, nor his future.
We are new to the Autism game, so I will just share a few brief things that I hope will help if you need it:
-our IEP is scheduled for next month
-our local Children’s Developmental Services Agency did free evaluations and assessments, including audiology services
-autism-society.org website has lots of info
-your local chapter of the autism society will be there for local resources and support
-your local Family Support Network will be a great source of free information, workshops, get togethers, and special fun events for your son, you and his Dad, and his siblings (most are free)
-AutismSpeaks.com is sending us a free 100-Day kit for newly diagnosed children and parents, with tons of information, resources, etc.
-your pediatrician should refer you to a pediatric neurologist to ensure there were no infant and/or toddler seizures (which are not easily detected as they are in adults), which would cause delays
-Actress Jenny McCarthy has a WONDERFUL book called “Louder Than Words: A Mother’s Journey in Healing Autism”-a must have
-other great books: Facing Autism by Lynn Hamilton, Special Diets for Special People by Lisa Lewis, and Healing the New Childhood Epidemics (Autism, ADHD, Allergies, and Asthma) by Kenneth Bock, M.D. (all books can be found in your local library)
If you need any further support, advice, or an understanding ear and shoulder, our family is available. Hugs and Kisses, and let’s think of it like this: God must treasure us as individuals and moreso as parents in order to entrust us with his most precious children, knowing that we would love them unconditionally, and honor them for the special and wonderful gifts that they are! You are a gift, and so is your son! You’re blessed!
Also…(I hope I don’t overload you)
a website for parents of color with children with Autism (In case you need it) is http://www.child-autism-parent-cafe.com/african-americans-and-autism.html
Someone earlier mentioned Holly Robinson Peete as a fellow parent; there is also Tisha Campbel-Martin and Toni Braxton, to start.
First of DO NOT blame yourself. Yeah I know that’s easier said then done. If your son has autism it is by no means your fault! Been there! One thing to know that your son is young and being young means that there is early intervention. I don’t know what State your in but there can be ALOT of resources in your state. Not every state or insurance company covers autism either. Dakota my son was diagnosed with autism at the age of 18 months. However we flagged all the signs at 10 1/2 months. If I can be of any help please let me know. If you just want to vent or ask questions email me. I honestly don’t mind
By the way your son is adorable!
Just wanted to tell you that I love your blog… I also have a son who was labeled autistic at 3. It has been a stressful journey but now I see the blessing in it.
My advice is early intervention. He can really thrive in the right setting. Speech therapy a good program, get him on all of the waiting lists early.
Take care.
Valerie
I know you blame your elf but you should not. You are a wonderful mother and that is what is takes a Strong Mother to get Autistic Children where they need to be. I Student teach a 3 year old Special needs class and the children in the class have different disorders and Autisum is one of the many. I love the children in this class. I can relate to some of them better than I can to other studetns in my regular education classes. You have nothing to worry about. I have saw so many progressions in one year in every studnt in the class. I have some books that you could read if you want them about Parents and how they have had to deal with the facts of a child with a disorder. I can send them to you. Special Education is what I will certify in when I so finish college,it is a challenge, but the children are worth it. Like so may of that other ladies stated, from the day the starts school be involved in the IEP (Individual Education Plan) and attend all the meetings you can. I know you and your family will make it through this. Just keep the faith. I am always a E mail away!!! ALWAYS!!!!!
Oh Shynea…I just wanna wrap my arms around you and give you the biggest hug. I am so late in responding to this. I knew that you had a lot going on lately, but had no idea the magnitude. As mama’s, we carry around all of the burdens for our children, questioning everything we did and trying to figure out what we could’ve done differently. But like all of the other ladies have said, this is not your fault…in any way. You’ve already been in my prayers and I will keep you in them. You are a very strong woman, so I know that you’ll get through this. You have lots of support and we love you!
Dear Shynea,
I am behind in reading and just saw your post about your son being evaluated for autism. I have a 15 year old who is on the autism spectrum. I wanted to tell you not to feel guilty if your son is diagnosed…you haven’t done anything that would have caused him to have it. Althought there are many theories as to the cause of autism….parenting is definitely not one of them. The other thing I want to tell you is that although it seems overwhelming right now…kids on the spectrum are able to learn just like kids who don’t have autism….but they learn in a different way. Please feel free to contact me if there is anything you need…information is one of the best things you can get!