So, it looks like our little guy has the signs... and not just to us, but to a pediatrician specialist. I don't even know what to think. I do know that he's still our boy, and no matter what, we'll be there for him. It's still early and they still want to check his hearing and whatnot. Regardless, it's a bit of a hard pill to swallow. And out here, those kinds of tests take months to get done.
The thing is, he's getting worse. The tantrums have turned into complete meltdowns because he gets so easily overstimulated. It's so hard to tend to him while Spark is already miss Princess and needs attention all the time. I know next to nothing about raising a child with autism and I feel like I'm just the most inadequate mom ever I want to give Silas all the right kinds of attention he needs, but it's so overwhelming with both of them that almost every day I feel like breaking down and having a tantrum myself.
Does anyone have any good advice or links to places to read up on this? Does anyone know of other parents with multiples who have autism? Or parents of multiples where only ONE of them has autism? It's hard to find those needles in the haystack of the internet. Any other advice, or just words of comfort would be appreciated too... thanks.
I don't have any advice but I feel so sorry for you that you are going through this and my thoughts are with you. A co-worker of mine has a son with autism and I know from speaking with him about it, it was hardest when he was younger but he has grown up to be a great person. He loves movies and can name so many movies I've never even heard of and can tell you exaclty what happened.
I'm so sorry that you are going through this and I hope you have a lot of support to help you through.
Kim I'm sorry that would be so difficult! I don't have any personal experience with autism. I would call Help Me Grow (just google it to find your county's number), and they will send someone out to assess Silas and see what kind of help he needs. We did that for my boys because they are speech delayed - and they ended up getting into a center-based Early Intervention class, which has helped them immensely. Other than that, just be gentle with yourself - it's hard having two little people that need your attention all the time, whatever the reason! Try not to beat yourself up. Hugs!
Without knowing anything about your son, I can only provide some basic ideas. 1- ask for a referral for an assessment with a specialist in the area of autism. Make sure that they do cognitive assessments/observations as well as an assessment of play and social skills. The gold standard in the autism world is called the ADOS or Autism Diagnostic Observation Schedule. I cannot remember at what age the ADOS starts, but it may be around age 2? I need to look itup. Also, make sure that the professional does something to assess the sensory piece of autism and they conduct a thorough interview. Try to make sure they are asking questions about typical development as well as autism features. 2- Recognize that toddler meltdowns and tantrums are relatively normal for this age and work with someone to figure out if they are atypical in frequency, intensity, or both. If so, is it because of language, is it a sensory issue, or both? Ask who in your area can help you learn to diffuse or decrease tantrums before they start? 3- Along with that referral for an assessment, start asking for referrals for early interventions services and seek out evaluations in speech, fine motor skills and gross motor skills. A good assessment for autism will include all of these, but if not, seek them from your state's early intervention services.
I will say that I am growing increasingly concerned that we, meaning my fellow professionals, are overdiagnosing autism. That doesn't mean that I don't believe that your son is not on the spectrum. However, it is more just a caution when heading into evaluations. Try to think about your son objectively and with development in mind when answering questions rather than trying to see a possible diagnosis. It might make things a little more clear and it will help the person conducting the assessment. I often get "evaluations" where all the psychologist, physician, or psychiatrist did was interview the parents and observe the child during the interview. They had absolutely NO one-on-one interaction with the child, and did nothing to assess their speech, fine motor, gross motor, or social skills. They also did not look at what is typical for development and neglected the sensory piece of autism. So, as a school psychologist, I have to help determine if a child needs special education services, and I am forced to decide if a child is really on the spectrum or if there is something else creating issues. The problem is that many parents believe that they have had an evaluation completed by a "professional" when in reality it was subpar at best. So, they think the diagnosis is valid, when it may not be autism. It creates a real catch-22, and why believe me, an employee in the school--despite my training-- over this person who took their money and gave their child a diagnosis. So, I guess I get on my soapbox a bit about autism evaluations and diagnoses.
As far as feeling inadequate, please know that you are a good mother. We all have "mommy guilt" about many things and having twins multiplies this by 1000%, I swear. Having a child that possibly has special needs compounds this feeling. Please seek out some support for yourself and your family when necessary. Find other parents who know where you are at and understand what you are going through. Dealing with two kids the same age and providing more attention to one is very hard. It is so hard to divide your parental resources. Just recognize that you are doing the best that you can right now.
Mel: It's really hard to get any kind of specialist to Whitehorse, let alone here (6 hour drive north). But we did go into Whitehorse to see the specialist we saw. She didn't give us an autism diagnosis, and wants to rule everything else out first (which I think is wise). She also spent a good bit of one-on-one time with Silas (about a half hour) talking to him, playing with him, etc, so I was happy about that. She didn't just take our word for everything, but experienced it first hand. Only then did she say that yes, she did have the same concerns we did, but still wants to do the other tests. They are going to test his hearing, and also have the speech pathologist come and asses him more thoroughly. They are also going to do a chromosome test to rule anything out there as well.
When we have our next visit with the Child Development Centre, they are going to do the MCHAT (Modified Checklist for Autism in Toddlers) and see how he scores on that. We're being very ... open minded, and are keeping in mind that it's just as likely he's "delayed" as it is he's autistic, so that we don't become biased.
What would you say to look out for, as far as characteristics autistic children display? I can list some of the ones Silas is doing that the specialist noticed as well:
Flapping hands when confronted (specifically) with something new, or sees something familiar, or is excited, or something is taken away
Spinning, and a tendency to like spinning objects, and find parts of toys that are spinning, or try to spin toys that don't normally spin
Focus on one task, and hard to divert to another task
Hard to achieve and keep eye contact
Very rarely responds to his name
And another one that (obviously) could not be observed at the appointment - he was learning words and signs, but has gone back to knowing only one word (dada) and one sign (car). We *might* be getting him to say "orange" but it's a judgement call. I use the sign at the same time, and I think that helps.
Well, anyway, we're doing all we can. I am also reading a book called Son Rise which is an amazing true story about a severely autistic boy whose parents didn't give up on him. He was diagnosed as mentally retarded with a 30 IQ and now - he's majoring in biomedical ethics. A far cry from the "hopeless case" that his parents were told he was, and told that it was impossible to help him. If you get a chance to read it, I highly suggest it.
Thanks again everyone
Kim, I read that book years ago, it was amazing!
I love all of Mel's advice (as usual lol). I don't have any advice though, sorry. There is a family from church that I know, she has b/g twins (they were actually triplets but the other boy died at 26wk in utero), and the boy is autistic. He is high functioning autistic. They are the same age as my nine year old daughter. I know they have had struggles, but they have four amazing kids. The boy goes to a different school than his sister to get the services he needs, and I think in many ways it is good for them, gives them a little more individuality than twins sometimes get.
KUP, but please don't feel the mom guilt. You just do the best you can, and don't worry about the rest.
Rachel, momma to 4
dd 9, ds 7, twin boys Dec 09
I nursed my twins for 2years and 2 weeks! A little sad to be all done now.
Here are some more hugs. I understand your frustration with not being able to find a specialist and it being a long drive to find someone who can help. It is that way across the country, not just up in Alaska. Of course, it is easier in more populated areas, but I also think the tendency to overdiagnose increases in those areas as well. Keep on seeking whatever services you can find and continue to be an advocate. I can only imagine how you must feel. It is so hard to watch your child struggle with something. We are having minor issues with my DS and worried about ADHD, and there are days I just feel sick to my stomach and on the verge of tears. So, I know it is hard. I know we will try to provide support where we can.
I don't have but a quick second right now, I'm sorry for that, and I realize I've not been on this site in forever...so don't think I'm not real, okay? But just wanted to give you a heads up to message me if you want to talk about things because I am in a situation with one special needs twin between my girls much like you describe between your kiddos. Our DS is 3.5 and our girls are 1.5. Our baby B has a rare hearing impairment and Sensory Processing Disorder, which was from the lack of auditory stimulation, so she seeks extreme and often painful physical stimulus to compensate for the loss of hearing she has. It was profound deafness until 10 months but tubes cleared fluid and we discovered it was Auditory Neuropathy as opposed to a Sensorineural hearing loss. But anyway please do feel free to talk to me if you want. I believe our twins are close in age, yes? My girls were 5/10/10...so we are also around an interesting and challenging age of independence...ahhhhh!! (Tearing my hair out daily here...but each age does have it's challenges!)
DH married 6/24/06
DS born 4/29/08
Twin DD's born 5/10/10 at 35 weeks