Where I've Been
Honestly, I've been on a mission this past week to get some help for my son who is showing SOME signs of autism. I've learned quickly though, that saying your 2 year old may be showing signs of autism is not socially acceptable. People like to hear that you think he has a language delay or that he's a little slow. So, I've learned to not voice my concerns to my close friends, learned to keep my problem private, learned to be silent. It offends me a little, I feel like I've been supportive of their concerns as best I can... But I do understand that they think I'm just a concerned mother. Never mind that I've done A LOT of research, never mind that anything I read places him at high risk or that all the professionals say that I am valid in my concerns and that I owe it to my son to at least check it out.
I don't understand it really, I mean it's not like I'm saying my son is a super genius, the way people talk you'd think I WANT my son to be autistic. Like it's some ambition of mine. I really don't understand why it's so hard to understand that I have concerns and so I SHOULD at least check into it. Would they rather me ignore it, hope he'll "grow out of it" and then later find out that early intervention is the key?? It's not all insensitive people, I have a friend that met with me the very same day I asked her to tell me her son's story and she was caring and supportive and gave me phone numbers and help. Of course, I was vague and undetailed, but I have to protect myself a little sometimes.
So that's where I've been. Reading, calling, talking, meeting. We saw a child psychologist yesterday and he was very good. He was personable and professional. The initial meeting was a parent meeting to hear our concerns and find out some of his history. He also went through the m-chat checklist with us, which I was familiar with. He will be meeting again with all of us over the next few weeks to observe and do some testing with Nathan to see what he thinks. That's all I was looking for, a professional to observe him, do some testing and tell me what they think. Why? So that if there IS something going on we can work with him and get him the most help possible. If he comes back and says everything is fine, then gosh, Hallelujah! That's all I ask, just look into it and tell me what you think and what to do. I feel like I owe it to my son to do that.
Sorry for the melancholy post, I just figured it's best to be honest here, even if just to have the record of it somewhere.
- Julee
Comments
It has been my experience that the average person doesn’t really understand those types of things, either. When they are confronted by someone with a special needs child, they feel the need to be able to give advice, but they can’t because they haven’t been there. It becomes hard for them to even consider or hear someone else’s struggles.
I have the opposite problem. My grandson OBVIOUSLY has a developmental delay and lives in his own world. As near as I can tell he is either nearly deaf (more likely) or autistic (a distinct possibility). My DIL insists that he’s just developing at his own leisurely pace and won’t take him for screening.
ie. She’s in denial.
I’m not in a postition to do anything about it right now due some very ugly family semantics and a pending divorce between her and my son (who is too passive to act either.)
I feel so bad for the poor little guy! Actually, I haven’t seen him or heard from her in months. Perhaps God has answered my prayers and she’s sought some help for him. She’s typically a very attentive mom. Surely she can’t ignore it forever…
At any rate, you follow your gut feelings and get your son diagnosed or cleared so he can grow to his best potential. You go, girl!
Please don’t respond to that last comment on my blog. The DIL lurks…
I know the two are very different, however, my son is ADHD … a very severe case at that. There were tons of friends and family that told me he was “just a kid” and to medicate and parent him differently would be wrong. I felt, and still feel, that it is my job as a parent to protect and support my child. The people who criticize me for my decisions do not live in my shoes and know my child the way I do.
You do what is right for your child. You are his mother. You will always protect and try to do everything you can in his best interest. Never doubt that.
I hope you find the answers you need.
thank you for sharing your heart with us.
Julee, absolutely you should be checking it out! While my circumstances are a little different, we have had some issues with my son that only one of my friends really knows anything about. It does make people uncomfortable when children are different in any way. However, you are your child’s advocate. Whether you talk about it with you friends in real life, you are so wise to check things out now. As a former educator, I can say that early detection is always helpful. Keep us posted! I certainly hope that autism is not the problem, but if it is, you will be so glad you were diligent now. I will say a prayer for you!
By the way, I am so glad you liked Ordinary Days. You mentioned you felt like you were leaving an old friend, so I thought I would tell you that you don’t have to. She has a blog! http://dorcassmucker.blogspot.com/
Again, I hope things go well with your son. Keep us posted.
Lauren
My youngest daughter has Tourette Syndrome and had frequent rages, swearing…the whole nine yards. She also jerked her head and arms almost constantly. Otherwise she was a smart and loving child. But school ruined her. She turned to drugs. I have been raising her 12 year old son since he was born. He also has Tourettes, ADHD and OCD. But he has no rages, swearing or anger of any kind. Except for school. In third grade, his teacher was tired of hearing him make small growling sounds, so she sent him out to the patio all the other classes opened on and told him to bark at a tree. All of 4th grade, he was constantly berated by his teacher and was totally alone in a sea of kids. He begged me not to send him back and I didn’t. He is bright and loves to learn, but his attention gets locked on a subject and we just go as far as he wants on that and then start something else. Often it is brought on by something on the History Channel or one of the Discovery Channels. He is a great reader and has no trouble with Math so I am happy and so is he.
But the world butts in all the time to say I am denying him by homeschooling. He is outgoing and personable. I think I am preventing some kid or teacher getting kicked in the head one day when his red headedness kicks the traces. Stand strong for your son and know that you and he are the only ones who count in this process. It is hard work to raise even a mildly autistic child but well worth it to both of you to do it. God Bless,
Diana
I’ve never read your blog before, but I’m glad I read todays. I want to tell you that you SHOULD be your son’s advocate, and that I think that’s a wonderful thing you are doing for him. So many people today aren’t concerned enough about ways to help their child. I hope you find the answers you are looking for!
I was looking for a homeschool chat room (thinking fo homeschooling my 7 year old) and I was glad I came upon your site. I have,what everyone else calls,a normal child. But, I have the since he is not like everyone else. I don’t mean he has a learning disability or anything, he is just more sensitive than most children. I understand the fact that other people can make you feel unvalidated about what you think or feel. I think family and friends should take time and really listen to each other and ask what they can do to help. Everyone needs support and education. I hope everything works out for you and your son. I don’t know you, but it sounds to me like you know your child very well. There are too many people that are not “in-tune” enough to their childrens behaviors. I think, no matter how everything turns out, you will be able to handle it.
You are brave and very caring. Your son is a lucky little boy. I don’t know where you live, but please go to my website and let me know if you need our help. I was a speech path for many years before going into diagnostics. Thirty years of experience with children with special needs tells me you are doing the right thing. Listen to your heart….he is your little boy. Early intervention can lead to phenomenal progress! I have seen children diagnosed with autism receive intensive services and go on to lead normal lives due to the early intervention they received. God bless you for being such a good mother!
Your reaction seems perfectly reasonable to me. I hope all goes well for you.
I have a son with Asperger’s Syndrome, which is considered to be a form of Autism. And I have been where you are.
Often people are concerned about “labeling” a child “too soon.”
I remember my son’s pre-school teacher insisting that he would “grow out of it.”
Everything we know about ASD says that early intervention shows the greatest promise for a better functioning life. You do what you need to do. And call your state or local Autism Society. Social suppport from others who have been where you are is critical!
And since you are at About–go to About Autism. There is an incredible amount of knowledge out there.
Good luck with it all!
Julee, I’m continuing to pray for you and your family!
It took a total of two years to get my son diagnosed. He 6 year old birthday is Aug. 1st. Because it took so long there are some services he no longer qualifies for in our town of limited resources. I have read a lot of articles about early intervention and it is truely the key. I lost valubale time with Joseph.My best advice is teach him sign language it can sometimes calm the frustration of not being able to communicate if his receptive abilities are far above ability to vocalize his wants. cjodoin@ftc-i.net I am a single mom who stays at home alot due to my sons needs. Feel free to contact me if you need emotional support.
My brother is 24 and a high functioning autistic. He was misdiagnosed and mistreated for years. I wish Doctors knew as much about signs of Autism then as they do now. We always knew something was wrong but could never get proper help. It wasnt until he was older and all the articles we read described him perfectly, it was almost like light bulbs going off. I will pray for your son and your family that you get answers and help!! Stay positive and believe in miracles of healing!!
I happened to hop on this website because I am going to start homeschooling my 5 year old DD in the fall. And I read your blog.
You are a wonderful mother for what you want to do to help your son and that you knew there was something wrong. Mothers know best is what my mother always told me. So keep doing what you feel is right.
I have researched Autism a little bit because I feel like a relative of mine might have it, but the parents don’t see it.
There is a women who has written a book called the body ecology diet. My sisters in doing the diet. Her name is Donna Gates. I just recieved an email newsletter from her and it was titled ” A successful solution to Autism” If you go to www.bodyecology.com and go to Current Newsletter Articles, you can click on the link that says “Natural stategies to prevent and overcome Autism. I hope that this helps you. I read that it helped other families.
God bless you and your family.
Good for you for listening to your heart as you are the one who knows your son best! I hope in time the friends who are unable to understand will be able to be there for you, no matter what happens. Good luck.
Thank you for sharing your concerns about your son. It must be very difficult. Insensitive people abound in the system as well as outside of it. My oldest son was “different” from the time he was about 18 months old. We thought he had ADHD, but the wonderful child psychologist we found diagnosed him with a learning disability and told us which tests he needed in addition to the battery the school had done. He was in public school, and golly did I have to fight tooth and nail for intervention for him!
Remember that Nathan is one of God’s perfect creations. He is the perfect Nathan. Praise be to God that Nathan has a mom like you who cares deeply enough to seek answers to difficult questions.
Christine
I just happened on this site and saw this post - you are so right to go and get answers NOW. My younger son has been in speech therapy since he was 2 (speech delay - said NOTHING at 2, not even “mama”) and he was diagnosed with sensory processing disorder this spring (he’s 4 now). The SPD diagnosis was a relief - he had so many behavioral problems we didn’t know where to turn; at least now it makes sense, even if it’s not all better all of a sudden. It’s much better to know and be getting help.
Our former (!) pre-school didn’t know what SPD was and tormented my son for 18 months - I pulled him out the day I told his teacher of his diagnosis and her response was “what’s that?”. I guess what I’m trying to say is, the more you know now, the more you can plan, now just what therapy options you want, but also what his school experience will be - and that will be much, much better for your son.
Hang in there!
You said “I’ve learned quickly though, that saying your 2 year old may be showing signs of autism is not socially acceptable. People like to hear that you think he has a language delay or that he’s a little slow.”
To be generous, it may not be so much that they view your comments as socially unacceptable, but rather that they either are trying to gently disagree (if they know your child), or are trying to offer hope. Most parents have at least a vague idea of how difficult it may be to have an autistic child… that it is a serious difficulty for a family; they may simply be trying to encourage you not to look into the shadows, so to speak, when there has not yet been (?) a definitive diagnosis of autism.
This is the worst position to be in, you think your child should be doing more or are just concerned, but are you just worrying to much?
You ask the pediatrician and they brush you off-specialists have a waiting list…
My daughter was 10 months and still not sitting up on her own, we finally got our referral to early intervention and have graduated onto the school system.
I feel for anyone else going through this, it is so rough being a parent these days, then you add insurance on top of this, most insurances won’t cover the diagnosis developmental delay-what do you do until you get an acceptable diagnosis for insurance to pay?