Almost 3 & Diagnosed with Autism

[psimpson3-5]

Hello ladies! I haven't been posting much in the last 2 years for a multitude of reasons. I am back because I am desperate for your expertise and advice.

I realize many of you know this system, but I will be detailed just in case.

My son will be 3 in a few weeks. He has been receiving services from Early Intervention since September of 2014 due to issues with lack of attention and what I call "having his own agenda," they call it "self direction." It has been a VERY rocky road. We've been on wait lists to see a developmental ped at 2 different hospitals since October. Meanwhile, when my son turns 3, he has to move to a different agency - the local county Intermediate Unit (IU). DH and I work FT and my son attends DC typically FT. The IU completed multiple evaluations at DC, including a psych eval. The psych diagnosed my son with autism. The IU is suggesting their Preschool program, starting immediately after my son's birthday.

I am beside myself. I'm experiencing a flood of emotions. I feel like it's all my fault. I do not personally have any friends going through this so I feel very alone. My husband isn't much help and neither is my family. No one seems to understand. They all think my kid is just a normal toddler. DH said because I requested these services, including Early Intervention, that I have "sentenced our son to the short bus." I know he said it out of anger, but I know deep down he feels that it's partially my fault that our son is this way. How do you cope? What can I do? I'm so lost.

As a side note, my son also has a major evaluation scheduled at the end of April. The evaluation is with the IU's Childhood Autism Team CHeck Team (CATCH). The psych who diagnosed my son is on the team, as well as a developmental ped, and possibly other specialists (?).

[Indianamom2]

Oh sweetie....first of all, this isn't your fault. It isn't anyone's fault. Your little boy, whom I know you love dearly, is simply wired a little differently. His brain works in a different way, and rather than "sentencing him to the short bus", his mind may do amazing things like so many famous people who have been a little "different". Autism is this big scary unknown, yet I would venture to say that you know several people (adults, as well as children) who are somewhere on the spectrum and they are living pretty normal lives. So take a deep breath and know that this is not a "sentence". Instead, it's getting to know your own special child as he is and learning how to understand him better.

Second, give yourself some time. It's ok to feel overwhelmed and angry and hurt and scared. That's absolutely normal and letting yourself grieve what you thought should have been is healthy because in a way, you lost a dream. But when you can, pick yourself back up, become your son's best advocate and learn anything and everything that you can about his potential diagnosis. Be aware that you will likely be working with a team of therapists and doctors and they won't all agree and they won't all be a perfect fit for you and your son. He is so, so young still and there is a lot of time that can change a lot of things in his diagnosis, but early intervention and therapy absolutely cannot harm him. It would be far worse for you to have stuck your head in the stand and pretended that everything was typical. Be aware that an autism diagnosis will probably not be the only one he receives. He might also have ADHD, or anxiety or other issues, as it's pretty common to have several diagnosis at once.

Third, ignore every negative person...and there will be a lot, some of whom will surprise you. I think if you're like most of us, there will be some even within your own family who will try to downplay anything that the doctors might diagnose or say that you are overreacting. Ignore them and trust your mommy intuition. Even my very loving and well-meaning mom and mother-in-law thought I was overreacting with DD when we were seeking all sorts of interventions (she's got ADHD, major anxiety and is somewhere very high-functioning on the Asperger's end of the spectrum...if you watch The Big Bang Theory, think Sheldon). But as time went on and my DD grew, her issues didn't just magically disappear and it became more obvious to others that there were things that weren't typical. Both my mom and MIL have made it a point to tell me that they are so glad we sought early help for DD because it made a huge difference, they just couldn't see all that we, as her parents saw, very early on.

You and your son will be ok. Get him any and all help that you can and be persistent and intense. Therapy can't possible hurt him, and it can do an amazing amount of good, especially the earlier it is done. You can do this. Your Ds can do this. It doesn't change who he is or has always been. He's still your perfect little boy and he will go on to amaze you in so many ways. :hug:

[JCat]

First of all, it is NOT your fault! I know you will feel guilty about this off and on probably for a long time, but really and truly it is not your fault. Your DH should NOT be blaming you in any case. He is one your DS parents too. Getting your son diagnosed and therapy was the best thing you could have done. My son is 5 now and I see a HUGE difference between the kids who did NOT get therapy and the ones who have. Kids who get help improve, kids who don't sometimes get worse. (Hard to watch but it happens more often than you think.) The beginning of this when you first get a dx, even if you expected it, is the hardest part. I am sorry your husband is not fully on board.
Typical sevices will include, special ed preschool, speech therapy, occupational therapy, physical therapy, and possibly something called social skills group counseling. (All done during time at preschool.) Hopefully your county will offer you ABA therapy as well. (If not check your insurance for coverage.) There are going to be a lot of people at the meeting, all telling you where your child is behind and it can be hard. But just remember they WANT to show things in the worst possible light to help your child get services. Some states allow you to have what is called a parent advocate attend the meeting as well. It's free and usually another parent who has been through the same thing so they understand what you are going through.
Since it seems your family is not on board, I would highly recommend trying to find a group of other autism parents you can communicate with, whether it is IRL or online. Other parents are the single best resource EVER. One of them will always know something about what you are looking for, and there is a lot to know. Some school districts have a special education PTA as well you can join. They have a lot of info too.
If you like please PM me and ask anything you want. I will answer as best I can.

[StantonHyde]

Check your insurance to see if you can get ABA therapy. It is life changing for many, many kids with a spectrum diagnosis. You did not "cause" this my getting him diagnosed any more than getting diagnosed with cancer "causes" it. It's just his brain--it is what it is. Doesn't matter what the cause is-- you just have to go forward with treatment and intervention. This is going to be a long journey. There are LOTS of mammas here who can help. You are not alone!!

[MSWR0319]

Please know you did nothing to cause this. I'm so sorry your husband is making you feel that way. I don't have first hand experience, but my cousin's son was diagnosed with Autism just shy of 3. He wasn't talking hardly at all and wouldn't look at anyone. A year and a half later and he is a new kid! He still has a few quirks but you wouldn't really know he was autistic if you didn't know. They put him in the county EI preschool as soon as he turned 3 and it is what literally changed him. He also goes to speech therapy and maybe one other type outside of school. He is now talking to people, looking them in the eye, and is able to participate in school without the horrible meltdowns he used to experience. There is hope and you are doing the right thing to help him.

[JCat]

I would also say when you are ready and have time, read a few books about this. When I first got started, the best book I read was The Autism Sourcebook by Exkorn. Also read up on Sensory Processing Disorder as this usually goes hand in hand with Autism. (Out of Sync Child.) Later once you get your feet under you the Autism Discussion Page books (on Amazon) are a compilation of information that started out as a facebook page and are very helpful whether your child is mild, moderate, or severely autistic.

[ArizonaGirl]

IT IS NOT YOUR FAULT, NOR IS IT ANYONE ELSES.

He is just a special child that doesn't quite think the same way other kiddos do.

My DS has Autism and ADHD, and it is a rocky road to say the least (he is 6).

My husband initially had a hard time dealing with it, but I was almost relieved, because I new that something wasn't quite right and now I knew what was going on and where to get him the help he needed.

My husband has a shirt that I think sums things up nicely,

"Autism is not a processing error, it is just a different operating system."

[Mikey0709]

Bigs hugs. I went through the SAME thing.... almost to a T! You noticed something and YOU did the right thing by not letting it slide!!! You go mom! You are giving him an advantage.

My then 3 year old did enroll in the Intermediate Unit preschool starting at age 3.5 AND - - it was the BEST THING that could have happened to him. He LOVED school, the class was awesome and was a great mix of all different types of kids. I couldn't ask for a better experience, even though yes - i TOO was worried about labeling and that damn short bus. They diagnosed him as PDD-NOS..... honestly then and now I still see symptoms and his quirkiness. Other family members insisted he's normal and I was labeling. He barely said a word until age 4. I believe he is very high functioning austism.

Today he is an incredible 1st grader. Still in speech therapy - but HIGH honors in all other classes at our local charter school. I think that preschool made such a difference in his confidence level especially.

But let me tell you - - i was SOOOOO upset about even sending him to the IU school. I was especially upset sending a 3.5 year old on a bus! I mean - what if he got lost? he could barely tell anyone his name! I even had shoe tags made with emergency contact info! Again - this was the BEST THING I COULD HAVE DONE for him! He had the advantage over my other kids! He had an expertly trained teacher and assistant. by the 2nd week he couldn't WAIT for the bus.

You didn't do anything wrong... you did everything right. We all just want the best for our kids!

[Simon]

You have gotten such good advice already. This is not your fault at all and any fault would be shared equally with Dh, so I hope he finds a better way to manage his own emotions soon! We have dealt with many disbelievers over the years in our own journey and it can wear on you. Its different as we're not dealing with autism, though we did go through EI and those evals. I try to point out, either tactfully or no depending on my mood, to irritating people that finding a diagnosis is not the same as finding or causing something to be wrong. Its just putting a name to what was already there.

[elliput]

To echo what has already been said- THIS IS NOT YOUR FAULT. Autism just is. Period. It is a difference in how one's brain works and has been around for centuries. How your child is now is no indication of how your child will be a year from now, and definitely not anything like how they will be as an adult. There are many searchable examples of adults who were diagnosed with profound autism who have gone on to have a relatively successful life.

My DD is now 10 yo (4th grade) and received her official diagnosis at 4yo. She has gone from being essentially non-verbal to nearly on par with her peers. While she currently spends more of her school time in a resource room, she is with a regular class for science, social studies, and specials (art, music, PE, etc). She eats lunch with her peers and plays with them at recess. Also, this year for the first time since she started school, she rides the same bus every other kid rides. If you would have told me 6 years ago when we were in the middle of psychologist visits, evaluations and questionnaires that she would have come this far, I would have laughed at you and said "yeah, in my dreams." We are proof positive that with good intervention, dedicated teachers, therapists and aides, and time an autistic child can make tremendous strides in being able to successfully navigate the crazy world around them.

[NCGrandma]

More hugs and hope. A dear family member was diagnosed with Aspergers at age 4 or 5, and thanks to an intensive assortment of early-intervention therapies and a few detours through school situations that weren't great, she is doing remarkably well 5 years later. Sure, she still struggles with focusing (inattentive ADHD) and some anxiety, but she is basically a bright, happy, healthy, slightly quirky kid. When I reflect on how much she has changed, I am so thankful that her parents identified the problems early and persevered in finding what therapies worked (and what wasn't working). I am a strong believer in early interventions.


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[DualvansMommy]

Couldn't read and not comment! first of all, it is ok to be sad/angry and to feel whatever you're feeling right now so don't ignore those feelings by thinking you're being a bad mommy when it is far from it. It is a grieving process, for your dreams and goals. Also it doesn't mean you CAN'T dream and have goals for your ds just like any other parent. IT IS NOT YOUR FAULT TOO! NOR DH, it is just what it is.

as a special needs child then, i can only tell you early intervention is.the.best.thing ever to happen, so it is GOOD you are getting lots of help for your little one.

[MamaMolly]

The only thing you've 'done' is get your kiddo the very best of care possible. It is the number one best thing in the world you could have possibly done for your son. If nothing else your DH and family ought to be thanking you enthusiastically. I've seen the difference that EI can make in children your DS's age. As a preschool teacher it tears me up inside when parents refuse to have their child evaluated because of fears of labeling or what ever it is. It is such a wasted opportunity!

Kudos to you for listening to your heart and doing what is best for your DS.

[brittone2]

Getting a diagnosis early is a tremendous asset long-term. You are doing all of the right things. I worked primarily in EI but also worked in a special needs preschool program, specifically with a classroom that was primarily for kids with PDD-NOS and autism diagnoses. It was a great program. I was the PT and just pulled kids out for their sessions, but the SLP and OT were integrated into the classroom. The kids got their therapy time, but also had the benefit of the SLP and OT there to help in a myriad of ways all day long. Students could be redirected to appropriate sensory activities, seating could be adjusted, the SLP integrated therapy into the instruction being delivered by the teacher (prompting answers, facilitating communication with PECs, etc.).

It is so difficult to hear a diagnosis, and it is understandable that you are going through a lot emotionally right now. But know that you are on the right track, and all of the evidence points to intervention and diagnosis at an early age being a tremendous asset.

[OKKiddo]

I had to respond but most of what I was going to say has already been said. You've already proven yourself to be a great parent--you were in tune, proactive, and totally in love with your child despite the hardships you've both encountered. I was in your position not too long ago and it seemed like a dark tunnel with no visible light. I had to go through the grieving process and many of my family members (the ones who still hadn't accepted the presence of a problem nor the diagnosis) and they just didn't get it. I began attending support group meetings with other special needs parents but I can honestly say the moment that I felt my own acceptance and determination to achieve a positive end result was after we began attending multiple therapies in a children's therapy facility. I highly recommend seeking one such facility for you and your child! I was surrounded by other parents and children waiting for their appointments and I found friendship and support there. I was able to see the similarities between my child and others at therapy and I saw positive outcomes and knew that we weren't given a death knell--that his prognosis would really depend on how committed to therapy we were. We were VERY committed. :) Then my second son joined my first and I didn't grieve, I just jumped head first into the fray and got to work. They've both received Speech, Occupational, Physical and ABA Therapy.

[PZMommy]

You are a great mom, and you did the best thing by getting him help.

I teach kindergarten, and it pains me when I get students that could benefit from help, but the parents are in denial. I currently have a student in my general Ed kinder class who without a doubt is on the spectrum, but has no diagnosis and receives no therapies or support because his parents are in denial. Since the second day of school we've been trying to get through to the parents but they keep saying he just needs time and will catch up. This is a 6 yr old who is non verbal and wearing diapers still and spends his day spinning around the back of my classroom. It is heartbreaking!

[annex]

You are definitely in the right place - many parents who have gone through what you have here, and who write so eloquently that I can't match their wonderful words above. If you decide to read one blog about parenting an autistic child, this is the one I would start with, and her "welcome to the club" post -
https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

HTH,
Anne

[gatorsmom]

You should feel proud. You are one of the smart moms. I know several moms whose children clearly needed services and the moms chose instead to ignore the signs thinking their child would "get better on their own" or outgrow the issues that made them different. Things are not going well for those kids. They are now older and having trouble making friends, difficulties in their classes, etc., some are finally getting help but its much harder now that they are older. They could have made huge strides if they had started at a younger age....

It's so weird how some dads are afraid their kid won't measure up, fit in, be strong, etc when their children are really little. At some point they start to see their kids for the unique and interesting little individuals they are. That is when they start to appreciate and cherish the differences their children have. I noticed my Dh and his friends go through this. It was weird but I'm glad he and his friends are over it! Be strong and let your DH know you are definitely doing the right thing. As it turns out, DS1 ABSOLUTELY LOVED riding the short bus to get to his special preschool for speech therapy. And now he is 11yo, graduated out of any special programs and well-adjusted as can be. Hugs to you.

[magnoliaparadise]

Hi,
I have very little advice, but just couldn't not respond. I so loved your post and your honesty. You seem like such a great mom and good person.
Sending you hugs. I hope that you find a strong team of professionals and friends who you feel good about who can guide you/be there for you as you move forward.

[indigo99]

I didn't read all of the responses, but I will share what happened with us. DS was in early intervention because he was barely speaking when he turned 2. When he aged out of EI, he was tested by the school system and scored high on the autism tests. It's a really wide spectrum. DS is very intelligent (taught himself to read at age 4) and would probably appear to most people to be a typical 5-year-old now.

We already had him in a private (church-run) mothers-day-out "school" so we kept him there, but once weekly he also goes to the public preschool that services those who qualify for an IEP. He's come a LONG way in just a couple of years. He won't be tested again until the middle of kindergarten, but I suspect that he will no longer test as eligible by that point. We are starting to see some serious behavior issues though, and I find myself hoping that he will qualify for an IEP because I think he may need the extra attention and concessions. DS is the "teacher's helper" at the public preschool because he is so far advanced compared to his classmates now.

I do think that having your son work with experienced teachers will be helpful moving forward. If you're like me, you may not be around enough other kids that age to really know what's "normal". If your DH doesn't like the idea of putting him in the recommended program then look into putting him somewhere else with small classes and teachers who are willing to work with him. Honestly, the teachers in the public school are probably more qualified and experienced though (and free) so I would go there if you have the chance. Having people work with him on any sensory issues and exposing him to the social aspect of a school early can help him adapt and grow in ways that you probably can't on your own.

[sste]

I think for a lot of people, perhaps especially men, grief comes out as anger. It is horrible for the other parent though because they are grieving too and suddenly it feels like spouse, family members etc have turned on them in their hour of need.

I know it is difficult with all the "worse case scenarios" running through your head right now but I think you need information and also time to see how your DS develops. I agree with PP that there is tremendous range of impairment and difference (and talents!) across the autism spectrum. I have one friend whose son "fell off the spectrum" with intensive early services -- he was on the mild end, ppd-nos, and he got a lot of services early. This happens more than people think with mild cases and early intervention. At some point it is just a blurry line between extremely high functioning autism and typical.

Personally if it was me I would send H to therapy/support group, tell any other non supportive relatives to STFU as politely as possible and GO HARD into early intervention. I have a child with mild special needs and IMO there is no investment on the stock market etc with a better profit ratio than early intervention. As I write (a lot!) of therapy and tutoring checks I keep on telling myself this will pay off at a factor of 5-10 in services we won't need down the line and more importantly in my child's well-being.

[psimpson3-5]

I apologize for "falling off the grid" for a while. I want to thank each of you for your kind words, support, and advice. As may of you mentioned, I am overwhelmed emotionally. I sincerely hope that months from now I will look back on this time in my life and be amazed about the amount of progress my son has made. I am fortunate to have found a few new friends that are experiencing this as well. I was invited to partake in a focus group regarding the county autism/EI program last month. The (4) moms, who were also in the focus group, and I decided to meet up monthly. We met for the first time on Saturday. It's a great feeling to personally know someone else going through this. I am still very hesitant to tell my friends as they don't seem to understand. My family is no help either. My husband is feeling better about things, but he's still very concerned about the future.

Overall, it's very nice to have your support. I can't thank you enough.

We are preparing to meet up with the IU Service Coordinator on 3/25 to tour the preschool and review the IEP. It shocks me to think that my kid starts preschool on 4/6!

[elliput]

Meeting up with other parents is great! I'm glad you were presented with the opportunity to do so.

Your DH will come around, especially if you insist that he participate in school meetings, have him attend therapy sessions, etc. I was very frustrated with my DH for quite a while before DD's diagnosis was official (and even then for quite a while afterward). The future is always uncertain (even with typical kids). :)

[Simon]

I am glad you found a local group of women to share your experience and talk with. That sounds wonderful. I, too, hope you'll look back from the perspective of a few months down the road and be amazed at his progress. I know that when we were deep in EI that I never imagined being where we are today. I am also glad to hear your Dh is coming around a bit. IME, it helped a lot for my Dh to be present at Dr. or therapy appointments and "hear it from the experts." It didn't matter how often I shared their advice, or expressed my concerns and tried to engage Dh. When he finally came to a series of appointments because he had a few day off work, it was like things finally clicked for him. It helped get him to the place where I already was, if that makes sense.

[Gena]

I'm late to this thread, but I wanted to add my support.

DS got his official diagnosis of autism a week after his third birthday, after a five-month long diagnostic process. My husband had a very hard time with the diagnosis at first, and had disagreed with me about doing all the testing and evaluations, the Early Intervention, the private speech and OT, etc. But DH came around after a while and then got fully on board with everything.

One of of the best things for both of us was that I got involved in a local support group. It was great for me to talk to other moms who were going through the same thing and especially moms who had older kids. These moms had a lot of knowledge about local doctors, schools, therapists, etc. Through the group, DH got to meet other dads and see how they interacted with their autistic kids. This really helped him realize that we hadn't done anything wrong and that autism was the terrible thing he had feared.

Our first few years after diagnosis were really hectic. DS was in special needs preschool 4 days a week (half days). We did 15-20 hours a week of home ABA/VB. He had private speech and OT every week. We also had the autism playgroup every week and swimming lessons twice a week. It was hectic. But it all helped a lot.

DS will be 11 in just over a month. He is not a kid who can "pass" as typical for any length of time. He needs a lot of supports at school and a lot of structure at home. His development is definitely on a different path than typical kids, but he works hard and makes steady progress. He has amazing strengths and great challenges. He also has a unique perspective on things and strong opinions. He experiences the world different than most people and he forces us to see it differently too. He's a lot of fun and the joy of our lives.